2020 - Kementerian Kesihatan Malaysia

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MaHTASMalaysian Health Technology Assessment Section

MEDICAL DEVELOPMENT DIVISIONMINISTRY OF HEALTH

PRE-DIALYSIS EDUCATIONPROGRAMME

MOH/P/PAK/ 449.20(TR)-e

2020

HEALTH TECHNOLOGYASSESSMENT REPORT

MALAYSIAN HEALTH TECHNOLOGY ASSESSMENT SECTION (MaHTAS)MEDICAL DEVELOPMENT DIVISION

MINISTRY OF HEALTH

PRE-DIALYSIS EDUCATION PROGRAMME


DISCLAIMER

This Health Technology Assessment has been developed from analysis, interpretation and synthesis of scientific research and/or technology assessment conducted by other organizations. It also incorporates, where available, Malaysian data, and information provided by experts to the Ministry of Health Malaysia. While effort has been made to do so, this document may not fully reflect all scientific research available. Additionally, other relevant scientific findings may have been reported since completion of the review.

Please contact: [email protected] if you would like further information.

Published by Malaysian Health Technology Assessment Section, (MaHTAS)Medical Development Division, Ministry of Health MalaysiaLevel 4, Block E1, Complex E, Precinct 1Federal Government Administrative Centre62590, Putrajaya, MalaysiaTel: 603 88831246

CopyrightThe copyright owner of this publication is the Malaysian Health Technology Assessment Section (MaHTAS), Medical Development Division, Ministry of Health Malaysia. Content may be reproduced in any number of copies and in any format or medium provided that a copyright acknowledgement to the Malaysian Health Technology Assessment Section (MaHTAS) is included and the content is not changed, not sold, nor used to promote or endorse any product or service, and not used in an inappropriate or misleading context.

e ISBN : 978-967-2887-12-6

Available on the MOH website: http://www.moh.gov.my/v/hta

This HTA report was endorsed in HTA & CPG Council Meeting Bil. 1/2020 on 13th November 2020.

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HEALTH TECHNOLOGY ASSESSMENT REPORTMALAYSIAN HEALTH TECHNOLOGY ASSESSMENT SECTION (MaHTAS)

MEDICAL DEVELOPMENT DIVISION,MINISTRY OF HEALTH

AUTHORS:

DR. NUR FARHANA BINTI MOHAMADSenior Principal Assistant Director Malaysian Health Technology Assessment Section (MaHTAS)Medical Development DivisionMinistry of Health Malaysia

MDM. ROS AZIAH MOHD RASHIDSenior Assistant DirectorMalaysian Health Technology Assessment Section (MaHTAS)Medical Development DivisionMinistry of Health Malaysia

MISS GAN YAN NEEPrincipal Assistant DirectorMalaysian Health Technology Assessment Section (MaHTAS)Medical Development DivisionMinistry of Health Malaysia

MDM. KU NURHASNI KU ABDUL RAHIMSenior Principal Assistant DirectorMalaysian Health Technology Assessment Section (MaHTAS)Medical Development DivisionMinistry of Health Malaysia

DR. HANIN FARHANA KAMARUZAMANSenior Principal Assistant DirectorMalaysian Health Technology Assessment Section (MaHTAS)Medical Development DivisionMinistry of Health Malaysia

INFORMATION SPECIALIST:

MDM. WONG WAI CHEEMatron Malaysian Health Technology Assessment Section (MaHTAS)Medical Development DivisionMinistry of Health Malaysia

MDM. NORHARLINA BT CHE ZAKARIANursing OfficerMalaysian Health Technology Assessment Section (MaHTAS)Medical Development DivisionMinistry of Health Malaysia

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EXPERT COMMITTEE

YBHG. DATO’ DR ONG LOKE MENGSenior Consultant Nephrologist & Head of Nephrology Service, Ministry of Health, MalaysiaHospital Pulau Pinang

DR. RAFIDAH BINTI ABDULLAHConsultant NephrologistHospital Putrajaya

DR. SUNITA BAVANANDANConsultant NephrologistHospital Kuala Lumpur

DR. LEONG CHONG MENNephrologistHospital Kulim

DR. IRENE WONGNephrologistHospital Tengku Ampuan Rahimah, Klang

DR. NORAZINIZAH AHMAD MISWAN NephrologistHospital Ampang

DR. WAN HAZLINA WAN MOHAMAD NephrologistHospital Kuala Lumpur

DR. KHOR SU MEE DietitianHospital Pulau Pinang DR. NOORAINI BINTI DARUSClinical Psychologist and Head of ProfessionHospital Kuala Lumpur

MDM. RUWAIDA NUR BT ZAINUL ABIDINPharmacist UF52Pharmacy Department Hospital Serdang

MDM. CHOONG CHIAU LINGPharmacist UF52Pharmacy DepartmentHospital Selayang

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MDM. HJH. NOR FARIDAH BINTI MOHD ZAIDIMedical Social Officer S52Hospital Pulau Pinang

MISS CHAN PEK HARClinical PsychologistHospital Kuala Lumpur

MDM. ARSYURAHMAH BT ABDULL RAHMANDietitian Hospital Sultanah Nur Zahirah, Kuala Terengganu

MDM. MAHANI AHMADHead of NurseCAPD UnitHospital Tuanku Ja’afar, Seremban

DR. JUNAINAH BINTI SABIRIN(Public Health Physician)Former Deputy DirectorMalaysian Health Technology Assessment Section (MaHTAS)Medical Development Division Ministry of Health Malaysia

DR. IZZUNA MUDLA MOHAMED GHAZALI(Public Health Physician)Deputy DirectorMalaysian Health Technology Assessment Section (MaHTAS)Medical Development Division Ministry of Health Malaysia

EXTERNAL REVIEWERS

YBHG. DATUK DR. GHAZALI AHMADConsultant Nephrologist Institut Jantung Negara (IJN) YBHG. PROF MADYA DR. LIM SOO KUNFaculty of MedicineUniversiti Malaya

DR. ANITA MANOCHAConsultant NephrologistHospital Seberang Jaya, Pulau Pinang

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ACKNOWLEDGEMENT

The authors for this Health Technology Assessment Report would like to express their gratitude and appreciation to the following for their contribution and assistance:

• Health Technology Assessment and Clinical Practice Guidelines Council.

• Technical Advisory Committee for Health Technology Assessment.

• Nephrology clinics staff of Hospital Kuala Lumpur (HKL), Hospital Tengku Ampuan Rahimah Klang (HTAR) and Hospital Ampang.

DISCLOSURE

The authors of this report have no competing interest in this subject and the preparation of this report is totally funded by the Ministry of Health, Malaysia.

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EXECUTIVE SUMMARYBackground

Chronic Kidney Disease (CKD) is a growing public health concern which is responsible for various complications including all-cause and cardiovascular mortality, progression to end-stage renal disease (ESRD), cognitive decline, anaemia, mineral and bone disorders. The Global Burden of Disease 2015 study estimated that, in 2015, about 1.2 million people died from kidney failure, an increase of 32% since 2005. In Malaysia, the prevalence of CKD has increased from 9.1% in the 2011 Malaysian National Health and Morbidity Survey to 15.5% in 2018. The number of patients with CKD is expected to significantly rise in the future largely due to the increasing prevalence of diabetes, hypertension as well as the aging population in Malaysia.

It is known that timely referral to nephrologist is recommended for renal replacement therapy (RRT) in people with progressive CKD. In the Malaysian Clinical Practice Guideline (CPG) for Management of Chronic Kidney Disease (Second Edition) 2018, it is stated in the recommendation that CKD patient with rapidly declining renal function (stage 4 to stage 5) should be referred to a nephrologist/physician. The UK Renal Association recommends that all patients with severe CKD (stage 5 and progressive stage 4), alongside their families and carers, should be offered pre-dialysis education programme (PDEP).

This programme aims at improving knowledge and understanding of the condition, as well as assisting them in making decisions for RRT. However, in most studies, it is reported that about 40% to 60% of patients with CKD start dialysis in an unplanned fashion and/or under urgent circumstances despite regular follow-up by a nephrologist. This is of concern since in unplanned dialysis, patients forego the opportunity to make an informed, shared decision regarding the timing and modality of RRT as options for RRT under urgent conditions are often limited. This highlights the importance of a structured and comprehensive PDEP in preparing advanced-stage CKD patients for RRT.

At present, there is no standard national programme established in Ministry of Health for pre-dialysis education. Pre-dialysis education for advanced CKD patients is often done in different ways across the country. Effectiveness of such methods in delivering pre-dialysis education for advanced CKD patients is largely unknown. Therefore, this health technology assessment (HTA) was requested by Head of Nephrology Services, Ministry of Health, Malaysia to review the available evidence and feasibility of structured PDEP for advanced CKD patients before its adoption into national programme in Malaysia.

Technical featuresPre-dialysis education programme (PDEP) often described as multidisciplinary education programme, which consists of multiple education sessions where patients are educated by three or more health care professionals such as nephrologist, nurse, dietitian, medical social officer, home-dialysis coordinator, pharmacist, technician, or by other dialysis patients. This programme usually caters CKD patients who are in stage 4 and 5. There are variations in practice, however, PDEP usually includes individualised one-to-one sessions with a member or members of the multidisci plinary team and group discussions, peer counselling as well as problem-solving sessions have been described. The aims of this programme are mainly to provide patients with information on ESRD treatment options, help decision-making between treatments, and encourage self-care to improve quality of life.

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Policy QuestionShould a structured PDEP be expanded in all Ministry of Health facilities?

Objectivei. To assess the effectiveness and safety of PDEP for advanced CKD patientsii. To assess the organisational, ethical, legal and societal implications related to PDEP for

advanced CKD patients iii. To assess the cost-effectiveness of PDEP for advanced CKD patients iv. To assess the most suitable PDEP for Malaysian context

Research questionsi. Is PDEP effective and safe for advanced CKD patients?ii. What are the organisational, ethical, legal and societal implications of PDEP for advanced

CKD patients? iii. Is PDEP cost-effective for advanced CKD patients?

MethodsStudies were identified by searching the electronic database for published literatures pertaining to PDEP for advanced CKD patients. The following electronic databases were searched through the Ovid interface: Ovid MEDLINE® In-process and other Non-indexed citations and Ovid MEDLINE® 1946 to present, EBM Reviews - Health Technology Assessment (4th Quarter 2016), EBM Reviews - Cochrane Database of Systematic Review (2005 to Dec 2019), EBM Reviews - Cochrane Central Register of Controlled Trials (Dec 2019), EBM Reviews - Database of Abstracts of Reviews of Effects (1st Quarter 2016), EBM Reviews - NHS Economic Evaluation Database (1st Quarter 2016). Parallel searches were run in PubMed and INAHTA database. No limits were applied to the search. Detailed search strategy is as in Appendix 3. The last search was performed on 2nd December 2019. Additional articles were identified from reviewing the references of retrieved articles.

Results and conclusions:A. SYSTEMATIC REVIEW OF LITERATUREA total of 251 records were found to be potentially relevant and were screened using the inclusion and exclusion criteria. Sixteen out of 75 full text articles comprised of one SR with meta-analysis, one SR, one RCT, three cohort studies, two retrospective cohort studies, two pre- and post- intervention studies, four cross-sectional studies and two qualitative studies were finally included in this review. All studies included were published in English language between 2003 and 2018. Most studies were conducted in Taiwan, United States of America (USA) and Europe. Others were conducted in Brunei, The Netherlands, Turkey, Canada, Philippines and United Kingdom (UK).

EffectivenessThere was limited fair level of retrievable evidence to suggest that participation of advanced CKD patients in PDEP contributed to greater survival probability and higher one-year survival rate compared to those who did not. However, no significant difference reported after two years. Limited fair to good level of retrievable evidence to suggest lower mortality and morbidity rates in patients who had PDEP. Limited evidence demonstrated that patients who had PDEP had longer time to dialysis and better blood profiles compared to those who did not. Significantly lower peritonitis-related mortality rates and lower peritonitis-related morbidity rates were also noted in PD patients.

SafetyThere was no retrievable evidence on the safety issues with regards to PDEP for advanced CKD patients.

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OrganisationalHospitalisation / Length of stayThere was fair to good level of retrievable evidence to suggest that PDEP was associated with significantly lower frequency of temporary catheter use, lower rates of hospitalisation at dialysis initiation and post- dialysis, as well as shorter length of hospital stay.

Components of programmeThe evidence showed great variation in the components of the programmes described, from the multidisciplinary team members, to the educational process including timing, delivery styles, formats for content, structure, conduct of the programme and materials. However, most evidence reported involvement of multidisciplinary team members almost always comprised of nephrologists, nurses, dietitians and medical social officers, with few had pharmacist, clinical psychologist and patient volunteers. Most studies mentioned multiple individual sessions with few had mixed of individual sessions and group sessions as well as patients’ involvement. Majority involved patients with CKD stage 4 and 5 in the programme, with content tailored according to the patients’ CKD stage and principally focused on knowledge on nutrition, lifestyle modification, nephrotoxin avoidance, compliance to medications, preparation for RRT and modality choices with few reported hands-on and demonstration. Materials used ranged from video materials, printed materials, and website materials. Frequency of the sessions and follow-up were mostly depended on the CKD stage.

GuidelinesFew guidelines from UK, USA, France, Europe and a position statement following an expert meeting in Switzerland have been issued outlining the recommendations on the conduct of PDEP.

Social / PsychologicalThere was fair to good level of retrievable evidence to suggest significant association between PDEP and patient’s choice as well as receipt of PD and home dialysis for RRT. Limited evidence also showed higher rates of pre-emptive kidney transplantation rates, higher levels of knowledge of ESRD and RRT options as well as higher levels of adherence, lower depression levels and anxiety levels, and better HRQL were noted in patients who had PDEP.

Limited evidence also showed that patient factors including individualisation, educational factors including tailored education, appropriate time/information, and available resources as well as support systems were the influential factors on patients’ decision for RRT. Sub-optimal education, different perspectives between patients and staff, and the influence of patient experience were the three themes identified which related to improving PDEP.

Cost-effectivenessBased on two cost-analyses, significant reduction in medical expenditure after initiation of HD were noted in patients who had PDEP and the cost-saving effect came through the early preparation of vascular access and reduced hospitalisations.

B. LOCAL SURVEY ON PRE-DIALYSIS EDUCATION PROGRAMMEA multi-centre cross-sectional questionnaire survey was conducted in January 2020 to identify the essential components of pre-dialysis education programme based on the preferences of patients, carers and healthcare workers. A total of 39 respondents were recruited via purposive sampling from three public hospitals. Based on the survey findings, patients and carers preferred to have a 30-minute single session with multiple educators every three months delivered by a multidisciplinary team consisting of doctor, dietitian, patient representative, medical social officer, psychologist, pharmacist, nurse and medical assistant with a mix of education materials such as hands-on session or demonstration, audio-visual aids, leaflets or pamphlets and information about websites or online videos in the hospital setting. The pre-dialysis education may be given as an individual (one-to-one) or group session depending on the patient’s preference. The pre-dialysis education should be initiated approximately six months before starting treatment of choice, allowing patients and carers to have sufficient time to understand about available treatment options. Patients and carers agreed

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that being part of a patient support group would be helpful in solving real-life problems and that shared decision-making between doctors and patients is important to them. The healthcare workers expressed different preferences in terms of delivery method, time of initiation, duration, frequency, and venue which may arise from consideration of practical aspects such as daily burden of workload and capacity in delivering the education sessions, which should be taken into consideration when designing the PDEP.

RecommendationBased on the above review, a standardised approach to PDEP should be outlined before its expansion to all Ministry of Health, Malaysia facilities. A multidisciplinary team involving well-trained personnel, and optimally with mixed individual and group sessions as well as using interactive mixed education materials should be established. Comprehensive and more personalised content tailored according to the CKD stage taking account individual needs, emotional support, psychosocial aspects, involvement of family as well as caregivers and additional support from patients’ support group are advocated.

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TABLE OF CONTENTSDisclaimer iAuthors iiExpert committee iiiExternal reviewers ivAcknowledgement and Disclosure vExecutive summary viAbbreviations xii

1 CHAPTER 1 : INTRODUCTION1.1 BACKGROUND1.2 TECHNICAL FEATURES1.3 POLICY QUESTIONS

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2 CHAPTER 2: SYSTEMATIC REVIEW2.1 OBJECTIVES 2.2 RESEARCH QUESTIONS2.3 METHODS2.3.1 LITERATURE SEARCH STRATEGY2.3.2 STUDY SELECTION2.3.3 QUALITY ASSESSMENT STRATEGY2.3.4 DATA EXTRACTION STRATEGY2.3.5 METHODS OF DATA SYNTHESIS2.4 RESULTS2.4.1 RESULTS OF THE SEARCH2.4.2 DESCRIPTION OF THE INCLUDED STUDIES2.4.3 RISK OF BIAS ASSESSMENT2.4.4 EFFECTIVENESS2.4.4.1 PERITONITIS AND PERITONITIS-RELATED DEATH2.4.4.2 SURVIVAL RATE2.4.4.3 MORBIDITY AND MORTALITY 2.4.5 SAFETY2.4.6 ORGANISATIONAL ISSUES2.4.6.1 HOSPITALISATION AND LENGTH OF STAY2.4.6.2 COMPONENTS OF PROGRAMME2.4.6.3 GUIDELINES2.4.7 SOCIAL IMPLICATION2.4.7.1 MODALITY CHOICE2.4.7.2 PATIENTS’ SATISFACTION2.4.7.3 PATIENTS’ AND STAFF INSIGHTS2.4.7.4 PATIENTS’ KNOWLEDGE2.4.7.5 PSYCHOLOGICAL IMPLICATION2.4.8 COST-EFFECTIVENESS2.5 DISCUSSION

444444667779171919202022222224272929333435363738

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3 CHAPTER 3: LOCAL SURVEY ON PRE-DIALYSIS EDUCATION PROGRAMME3.1 AIM3.2 METHODS3.3 RESULTS3.4 DISCUSSION AND CONCLUSION3.5 REFLECTION/CRITICAL PERSPECTIVES

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4 CHAPTER 4: CONCLUSIONS AND RECOMMENDATIONS4.1 CONCLUSIONS4.1.1 SYSTEMATIC REVIEW4.1.2 PATIENT AND PUBLIC INVOLVEMENT IN PRE-DIALYSIS EDUCATION PROGRAMME4.2 RECOMMENDATIONS

51515152

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5 REFERENCES 53

6 APPENDICESAppendix 1- Hierarchy of evidence for effectiveness studiesAppendix 2- Health Technology Assessment ProtocolAppendix 3- Search strategyAppendix 4- Evidence Table (Included studies)Appendix 5- List of excluded studiesAppendix 6- Survey questionnairesAppendix 7-Suggestions to improve Pre-dialysis Education Programme

56576364899296

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AbbreviationsAIDET Acknowledge, Introduce, Duration, Explanation, Thank youADL Activities of Daily LivingCKD Chronic Kidney DiseaseCASP Critical Appraisal Skills ProgrammeCI Confidence IntervalCPE Comprehensive Pre-dialysis EducationCPG Clinical Practice GuidelineDVD Digital Versatile DiscESRD End-Stage Renal DiseaseeGFR Estimated Glomerular Filtration RateEU European UnionFDA Food Drug AdministrationGFR Glomerular Filtration RateGUIDE Structured Pre-dialysis Education Programme in The NetherlandsGRIPP2-SF Guidance for Reporting Involvement of Patients and the PublicHCW Healthcare WorkersHD HaemodialysisHTA Health Technology AssessmentHR Hazard Ratiohs-CRP High-sensitivity C-reactive ProteinINAHTA International Network of Agencies for Health Technology Assess-

mentiPTH intact Parathyroid HormoneIQR Interquartile rangeKDIGO Kidney Disease Improving Global OutcomesMaHTAS Malaysian Health Technology Assessment SectionMPE Multidisciplinary Pre-dialysis EducationMDM Multidisciplinary MeetingNIH National Institute of HealthNHI National Health InsuranceN/A Not-applicableOT Occupational TherapistOR Odds RatioPD Peritoneal dialysisPDEP Pre-dialysis Education ProgrammePPI Patient and Public InvolvementQoL Quality of liferHuEPO Recombinant Human ErythropoietinRRTOE Renal Replacement Therapy Options Educati nRRT Renal Replacement Therapy

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RCT Randomised controlled trialSR Systematic ReviewUSA United States of AmericaUK United Kingdom

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CHAPTER 1: INTRODUCTION

1.1 BACKGROUND

Chronic Kidney Disease (CKD) is a growing public health concern which is responsible for various complications including all-cause and cardiovascular mortality, progression to end-stage renal disease (ESRD), cognitive decline, anaemia, mineral and bone disorders.1 The Global Burden of Disease 2015 study estimated that, in 2015, about 1.2 million people died from kidney failure, an increase of 32% since 2005.2 In 2010, it was estimated that around 2.3 to 7.1 million people with ESRD died without access to chronic dialysis.2 However, despite of these growing figures, the awareness remains low among patients and health-care providers.1

In Malaysia, the prevalence of CKD has increased from 9.1% in the 2011 Malaysian National Health and Morbidity Survey3,4 to 15.5% in 20185. Awareness of CKD was hardly improved in seven years from 4% of respondents in 20115 to 5% in 2018.6 In the year of 2011, there were 27,572 patients on renal replacement therapy (RRT) in Malaysia5 and the figures have grown to a total of 37,183 patients on regular dialysis in 2015, with 7,595 new patients entering dialysis.3 The number of patients with CKD is expected to significantly rise in the future largely due to the increasing prevalence of diabetes, hypertension as well as the aging population in Malaysia.3 This will certainly contribute to the major increase in the future needs for RRT and impose a large burden on health care budget.

According to Malaysian Clinical Practice Guideline (CPG) for Management of Chronic Kidney Disease (Second Edition) published in 2018, CKD is defined as an estimated glomerular filtration rate (eGFR) of <60 ml/min/1.73 m2 that is present for more than three months with or without evidence of kidney damage, or evidence of kidney damage that is present for more than three months with or without eGFR <60 ml/min/1.73 m2.3 Markers for kidney damage includes albuminuria (albumin excretion rate ≥30 mg/24 hours or albumin-creatinine ratio ≥3 mg/mmol), urine sediment abnormalities, abnormalities detected by histology, structural abnormalities detected by imaging and history of kidney transplantation.3 Classification of CKD is currently based on cause, glomerular filtration rate (GFR) category, and albuminuria category and follows Kidney Disease Improving Global Outcomes (KDIGO) 2012 guidelines which has health and prognostic implications.3,7 The GFR categories mapping to the previous five-stage classification have been retained but with subdivision of the G3 category of 30 to 59 mL/min per 1.73 m2 into categories G3a (45 to 59 mL/min per 1.73 m2) and G3b (30 to 44 mL/min per 1.73 m2).8 This was driven by data supporting different outcomes and risk profiles in these categories.8 Severity is expressed by level of GFR and albuminuria and is linked to risks for adverse outcomes, including death and kidney outcomes.8

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Table 1. Prognosis of CKD by GFR and albuminuria category3,7

It is known that timely referral to nephrologist is recommended for RRT in people with progressive CKD in whom the risk of kidney failure within one year is 10–20% or higher, as determined by validated risk prediction tools.7 In the Malaysian CPG for Management of Chronic Kidney Disease (Second Edition) 2018, it is stated in the recommendation that CKD patient with rapidly declining renal function [loss of eGFR >5 ml/min/1.73 m2 in one year or >10 ml/min/1.73 m2 within five years] or eGFR <30 ml/min/1.73 m2 (eGFR categories G4 to G5) should be referred to a nephrologist/physician3. UK Renal Association recommends that all patients with severe CKD (stage 5 and progressive stage 4), alongside their families and carers, should be offered pre-dialysis education programme (PDEP).9

This programme aims at improving knowledge and understanding of the condition, as well as assisting them in making decisions for RRT.9 However, in most studies, it was reported that about 40% to 60% of patients with CKD start dialysis in an unplanned fashion and/or under urgent circumstances despite regular follow-up by a nephrologist.10 This is of concern since in unplanned dialysis, patients forego the opportunity to make an informed, shared decision regarding the timing and modality of RRT as options for RRT under urgent conditions are often limited.10 Studies reported that advanced age, increased comorbidity burden, late referral to nephrology, and lower GFR at dialysis initiation were the most common independent risk factors for unplanned dialysis.10,11 In addition, patients who had unplanned dialysis were found much less likely to have received formal pre-dialysis education about the different options for RRT.10,11 This highlights the importance of a structured and comprehensive PDEP in preparing advanced-stage CKD patients for RRT as unplanned dialysis is known to be associated with increased patient morbidity, mortality, hospitalisations, needs for temporary catheter insertion which subsequently increase the risk of catheter related sepsis and inevitably contribute further to the economic burden of CKD.

At present, there is no standard national programme established in Ministry of Health for pre-dialysis education. Pre-dialysis education for advanced CKD patients is often done in different ways across the country. Several centres in Peninsular Malaysia have specific programme for pre-dialysis education while numerous other centres lack such a programme. Certain hospitals conduct half-day talk monthly which involves sharing experiences by peritoneal

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dialysis (PD), haemodialysis (HD) and kidney transplant nurses as well as exploring the funding options by the medical social officer and inputs by dietitian for CKD patients and family members. Effectiveness of such method in delivering pre-dialysis education for advanced CKD patients is largely unknown. Therefore, this health technology assessment (HTA) was requested by Head of Nephrology Services, Ministry of Health, Malaysia to review the available evidence and feasibility of structured PDEP for advanced CKD patients before its adoption into national programme in Malaysia.

1.2 TECHNICAL FEATURES

Pre-dialysis education programme (PDEP) often described as multidisciplinary education programme, which consists of multiple education sessions where patients are educated by three or more health care professionals such as nephrologist, nurse, dietitian, medical social officer, home-dialysis coordinator, pharmacist, technician, or by other dialysis patients.11 This programme usually caters CKD patients who are in stage 4 and 5.11 There are variations in practice, however, PDEP usually includes individualised one-to-one sessions with a member or members of the multidisci plinary team and group discussions, peer counselling as well as problem-solving sessions have been described wherein patients discuss treatment modalities, as well as barriers, benefits, and troubleshooting of possible problems with other patients.11 Topics covered in this programme mostly include patients’ renal care, nutrition, lifestyle, nephrotoxin avoidance, medications, preparation for RRT and modality choices depending on the CKD stage. Variety of formats have been described in the delivery style of the programme such as group lectures, interactive workshops, open forum sessions as well as written and audio-visual materials to take home.11,12

The multidisciplinary team should include or have access to dietary counselling, education and counselling about different RRT modalities including HD, PD, home dialysis, and transplant options, vascular access surgery, as well as ethical, psychological and social care.8 The aims of this programme are mainly to provide patients with information on end-stage kidney disease treatment options, help decision-making between treatments, and encourage self-care to improve quality of life.12 A systematic approach with PDEP is thought to assist patients in preparation for RRT and prevent the complications of unplanned dialysis subsequently reduce the complications of ESRD.

1.3 POLICY QUESTION

Should a structured PDEP be expanded in all Ministry of Health facilities?

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CHAPTER 2: SYSTEMATIC REVIEW

2.1 OBJECTIVE

2.1.1 To assess the effectiveness and safety of PDEP for advanced CKD patients2.1.2 To assess the organisational, ethical, legal and societal implications related to PDEP

for advanced CKD patients 2.1.3 To assess the cost-effectiveness of PDEP for advanced CKD patients2.1.4 To assess the most suitable PDEP for Malaysian context

2.2 RESEARCH QUESTIONS 2.2.1 Is PDEP effective and safe for advanced CKD patients? 2.2.2 What are the organisational, ethical, legal and societal implications of PDEP for

advanced CKD patients? 2.2.3 Is PDEP cost-effective for advanced CKD patients?

2.3 METHODS

2.3.1 Literature search strategy

Studies were identified by searching the electronic database for published literatures pertaining to PDEP for advanced CKD patients. The following electronic databases were searched through the Ovid interface: Ovid MEDLINE® In-process and other Non-indexed citations and Ovid MEDLINE® 1946 to present, EBM Reviews - Health Technology Assessment (4th Quarter 2016), EBM Reviews - Cochrane Database of Systematic Review (2005 to Dec 2019), EBM Reviews - Cochrane Central Register of Controlled Trials (Dec 2019), EBM Reviews - Database of Abstracts of Reviews of Effects (1st Quarter 2016), EBM Reviews - NHS Economic Evaluation Database (1st Quarter 2016). Parallel searches were run in PubMed and INAHTA database. No limits were applied to the search. Detailed search strategy is as in Appendix 3. The last search was performed on 2 December 2019. Additional articles were identified from reviewing the references of retrieved articles.

2.3.2 Study selection

Based on the policy questions, the following inclusion and exclusion criteria were used: -

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Inclusion criteria

a. Population Adults patients with advanced CKD stage 4, 5

b. Intervention

Pre-dialysis education programme (PDEP):i. Multidisciplinary team comprised of nephrologists/

dietitians/ medical social officers/ pharmacists/ nurses/ psychologists/ HD or PD patient volunteers etc.

ii. Multiple sessionsiii. Relatively detailed description of the programme,

such as sessions frequency, content of sessions, and descriptions of educators

c. Comparator i. No PDEP ii. No comparator

d. Outcomesi. Effectiveness of PDEP

- Mortality- Morbidity- Quality of life (QoL)

ii. Safety- Complications- Adverse events

iii. Organisational- Unplanned dialysis- Hospital admission- Length of hospital stay- Components of pre-dialysis education

programme(content, structure, delivery style, timing)

- Training- Guidelines

iv. Ethical, legal implications

v. Psychological/Societal implications:

- Compliance- Acceptance- Patient satisfaction- Patient preference/ dialysis modality choice- Mental health issues

vi. Economic impact- Cost- Cost analysis- Cost-effectiveness- Economic evaluation

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e. Study design

HTA reports, systematic review (SR), SR with meta- analysis, randomised controlled trial (RCT), cohort study, case-control study, cross-sectional study and economic evaluation studies

f. Full text articles published in English

Exclusion criteria

a. Study design: animal study, narrative review, case series, case reports and early stage CKD patients.

b. Non-English full text article

Based on the above inclusion and exclusion criteria, study selection was carried out independently by two reviewers. Disagreement was resolved by discussion.

2.3.3 Quality assessment strategy

The methodological quality of all the relevant full text articles retrieved was assessed using the relevant checklist of Cochrane Collaboration Assessment tools, NIH and Critical Appraisal Skills Programme (CASP) depending on the type of the study design. Assessment of the risk of bias was done by two reviewers and achieved by answering a pre-specified question of criteria assessed and assigning a judgement relating to the risk of bias as either:

+ Indicates YES (low risk of bias)

? indicates UNKNOWN risk of bias

- Indicates NO (high risk of bias)

All full text articles were then graded based on guidelines from the U.S./Canadian Preventive Services Task Force (Appendix 1).

2.3.4 Data extraction strategy

Data were extracted from the included studies by a reviewer using a pre-designed data extraction form (evidence table as shown in Appendix 4) and checked by another reviewer. Disagreements were resolved by discussion. Details on: (1) methods including study design, (2) study population (3) type of intervention, (4) comparators, (5) outcome measures including effectiveness of PDEP, safety, cost, cost-effectiveness, economic evaluation, organisational and social issues were extracted. Other information on author, journal and publication year, and study objectives were also extracted. The extracted data were presented and discussed with the expert committee.

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2.3.5 Methods of data synthesis

Data on the effectiveness, safety, cost-effectiveness, organisational and social implication of PDEP for advanced CKD patients were presented in tabulated format with narrative summaries. No meta-analysis was conducted for this review.

2.4 RESULTS

2.4.1 Search resultsAn overview of the search is illustrated in Figure 1. A total of 332 records were identified through the Ovid interface: MEDLINE, EBM Reviews-Cochrane Database of Systematic Reviews (2005 to December 2019), EBM Reviews-Cochrane Central Register of Controlled Trials (December 2019), EBM Reviews-Health Technology Assessment (4th Quarter 2016), EBM Reviews-DARE, EBM Reviews-NHS Economic Evaluation Database (1st Quarter 2016) and Embase. Searches were also conducted in PubMed, Horizon Scanning database, INAHTA database, and FDA database. The last search was run on 02 December 2019.

Thirty-nine additional records were identified from references of retrieved studies. After removal of 120 duplicates, a total of 251 records were found to be potentially relevant and were screened using the inclusion and exclusion criteria. Of these, 75 relevant abstracts were retrieved in full text. After reading, appraising and applying the inclusion and exclusion criteria to the 75 full text articles, 16 full text articles were included. A total of 59 full text articles were excluded due to irrelevant study design (n = 17), irrelevant intervention (n = 28) and irrelevant population (n = 14). The excluded articles are listed in Appendix 5.

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Number of records identified through

electronic databases searching (n=332)

Number of additional records identified from other sources (n=39)

Number of records after duplicates removed (n=251)

Number of records screened (n=251)

Number of full-text articles assessed

for eligibility (n=75)

Number of full-text articles included in qualitative

synthesis (n=16)

Number of full-text articles excluded

(n=59) with reasons:

- Irrelevant study design (n=17)-Irrelevant intervention(n=28) -Irrelevant population (n=14)

Number of records excluded (n=176)

Figure 1: Flow chart of retrieval of articles used in the results

9



2.4.2 Description of the included studies: Sixteen full text articles included in this review comprised of one SR with meta-analysis,

one SR, one RCT, three cohort studies, two retrospective cohort studies, two pre- and post- intervention studies, four cross-sectional studies and two qualitative studies. All studies included were published in English language between 2003 and 2018. Most studies were conducted in Taiwan, United States of America (USA) and Europe. Others were conducted in Brunei, The Netherlands, Turkey, Canada, Philippines and United Kingdom (UK).

Of the 16 included studies, one SR, two cohort studies and one retrospective cohort study were included in the effectiveness section of this review. One RCT, two cohort studies and two retrospective cohort studies covered organisational issues related to hospitalisation; one SR with meta-analysis, one SR, and three cross-sectional studies covered organisational issues related to modality choice; one SR and meta-analysis, two qualitative studies and one pre- and post- intervention study covered societal implications related to patients’ satisfaction, insights and knowledge; and the other one pre- and post- intervention study covered psychological implications. Studies which covered few different sections were mentioned more than once. Two cost- analysis which were conducted alongside RCT and retrospective cohort study were included in the cost-effectiveness section of this review. No retrievable evidence was found on the safety aspects of pre-dialysis education programme for advanced CKD patients.

Description of 16 full-text articles included in qualitative synthesis are presented in Table 2.

10


Tabl

e 2.

Des

crip

tion

of th

e in

clud

ed s

tudi

es: s

tudy

des

ign,

num

ber o

f pat

ient

s, in

terv

entio

n, c

ompa

rison

, com

pone

nts

of p

rogr

amm

e an

d su

mm

ary

of re

sults

.

Stud

ySt

udy

desi

gnN

umbe

r of

pat

ient

sIn

terv

entio

n &

Com

paris

onC

ompo

nent

s of

pre

-dia

lysi

s ed

ucat

ion

prog

ram

me

Sum

mar

y of

resu

lts

Hsu

CK

et

al. (

2018

)13

-Tai

wan

Coh

ort s

tudy

-f/up

5 y

ears

398

PD p

atie

nts:

169

PDEP

22

9 N

o PD

EP

befo

re s

tarti

ng

PD.

Mul

tidis

cipl

inar

y pr

e-di

alys

is

educ

atio

n (P

DEP

)vs

. Cus

tom

ary

care

(No-

PDEP

)

•Ed

ucat

ion

by m

ultip

le in

divi

dual

se

ssio

ns w

ith te

am m

embe

rs•

Com

pris

ed a

nur

se o

f cas

e m

x, m

edic

al

soci

al o

ffice

rs, d

ietit

ians

, nep

hrol

ogis

ts,

and

HD

&PD

pat

ient

vol

unte

ers

•Kn

owle

dge

on n

utrit

ion,

life

styl

e m

odifi

catio

n, n

ephr

otox

in a

void

ance

, m

edic

atio

ns a

nd g

iven

acc

. to

CKD

st

age

•Pr

epar

atio

n fo

r RRT

, mod

ality

cho

ices

gi

ven

to la

te s

tage

CKD

-PD

EP g

roup

had

sig

nific

antly

:•

less

per

itoni

tis•

low

er p

erito

nitis

-rela

ted

deat

h ra

tes

•lo

nger

med

ian

time

to fi

rst

perit

oniti

s

-No

sign

ifica

nt d

iffer

ence

in n

o. o

f ho

spita

lisat

ion

and

tech

niqu

e fa

ilure

s

Zukm

in K

et

al.14

(201

7)-B

rune

i

Ret

rope

ctiv

e co

hort

stud

y-f/

up 2

yea

rs

350

new

cas

es

of E

SRD

:18

0 PD

EP16

8 N

o PD

EP-M

edia

n eG

FR

4.0

mL/

min

/ 1.7

3 m

2 ,

PDEP

vs. N

o PD

EP•

Educ

atio

n by

mul

tiple

indi

vidu

al s

essi

ons

with

team

mem

bers

•Te

am in

clud

es n

ephr

olog

ists

, tra

ined

nu

rse,

die

titia

ns, a

nd m

edic

al s

ocia

l of

ficer

s•

Stra

tegi

es to

impr

ove

com

plia

nce,

nu

tritio

nal n

eeds

, nep

hrot

oxin

s av

oida

nce,

fast

trac

k va

scul

ar s

ervi

ces

for fi

stul

a, e

arly

RRT

•C

ultu

ral a

ccep

tanc

e an

d re

ligio

us

coun

sellin

g al

so c

over

ed

-PD

EP g

roup

had

sig

nific

antly

:•

bette

r sur

viva

l pro

babi

lity

•de

crea

sed

risk

of d

ying

•hi

gher

1-y

ear s

urvi

val r

ate

11



Stud

ySt

udy

desi

gnN

umbe

r of

pat

ient

sIn

terv

entio

n &

Com

paris

onC

ompo

nent

s of

pre

-dia

lysi

s ed

ucat

ion

prog

ram

me

Sum

mar

y of

resu

lts

Van

den

Bosc

h J

et

al. (

2015

)11

SR29

stu

dies

:19

qua

si-

expe

rimen

tal

desi

gn10

nar

rativ

e re

view

s

- 19

stud

ies

wer

e an

alys

ed

for e

ffect

ive

com

pone

nts

of

PDEP

PDEP

Des

crip

tions

of t

he e

duca

tiona

l pro

cess

var

ied

and

incl

uded

indi

vidu

al a

nd g

roup

edu

catio

n,

mul

tidis

cipl

inar

y in

terv

entio

n, a

nd v

aryi

ng

dura

tion

and

frequ

ency

of s

essi

ons.

•7

artic

les

desc

ribed

PD

EP c

onsi

sts

of

mul

tiple

edu

catio

n se

ssio

ns b

y 3

or

mor

e he

alth

car

e pr

ofes

sion

als

such

as

neph

rolo

gist

, nur

se, d

ietit

ian,

med

ical

so

cial

offi

cer,

hom

e-di

alys

is c

oord

inat

or,

phar

mac

ist,

tech

nici

an, o

r by

othe

r di

alys

is p

atie

nts

•Ed

ucat

ion

deliv

ery

styl

e ca

n ei

ther

be

one-

on-o

ne s

essi

ons

or c

lass

room

te

achi

ng s

tyle

, but

a m

ix o

f one

-on-

one

and

grou

p se

ssio

ns is

adv

ocat

ed•

eGFR

< 3

0 m

L/m

in (s

tage

4 C

KD) h

as

been

repo

rted

as id

eal f

or re

ferra

l to

CKD

clin

ic

PDEP

gro

up:

•8

stud

ies

repo

rted

bette

r mor

talit

y an

d m

orbi

dity

rate

s in

PD

EP

grou

p •

6/9

stud

ies

repo

rted

high

er

prop

ortio

n of

pat

ient

s se

lect

ing

hom

e di

alys

is (P

D o

r ano

ther

ho

me

mod

ality

)•

4/19

qua

si-e

xper

imen

tal s

tudi

es

repo

rted

high

er le

vels

of

know

ledg

e of

ESR

F an

d R

RT•

Two

stud

ies

repo

rted

on lo

wer

le

ngth

of h

ospi

tal s

tay

Wu

IW e

t al

. (20

09)15

-Tai

wan

Coh

ort s

tudy

f/up

1 ye

ar57

3 C

KD

patie

nts:

-287

PD

EP-2

86 N

o PD

EPC

KD S

tage

3

(27.

4%)

Stag

e 4

(21.

5%)

Stag

e 5

(51.

1%)

PDEP

vs.

cu

stom

ary

care

(N

o PD

EP)

•Ed

ucat

ion

by m

ultip

le in

divi

dual

ses

sion

s w

ith te

am m

embe

rs•

Com

pris

ed a

nur

se fo

r cas

e m

x, m

edic

al

soci

al o

ffice

rs, d

ietit

ians

, HD

and

PD

pa

tient

vol

unte

ers

and

neph

rolo

gist

s•

Indi

vidu

al le

ctur

es o

n re

nal c

are,

nu

tritio

n, li

fest

yle,

nep

hrot

oxin

av

oida

nce,

and

med

icat

ions

dep

endi

ng

on C

KD s

tage

•Pr

epar

atio

n fo

r RRT

, mod

ality

cho

ices

gi

ven

to la

te s

tage

CKD

PDEP

gro

up h

ad s

igni

fican

tly:

•lo

nger

tim

e to

dia

lysi

s•

bette

r blo

od p

rofil

es•

low

er fr

eque

ncy

of te

mpo

rary

va

scul

ar c

athe

ter u

se•

grea

ter p

ost-d

ialy

sis

body

w

eigh

ts•

high

er P

D in

take

•lo

wer

ove

rall

mor

talit

y •

high

er m

edia

n su

rviv

al ti

me

•lo

wer

1-y

ear h

ospi

talis

atio

n ra

te

12


Stud

ySt

udy

desi

gnN

umbe

r of

pat

ient

sIn

terv

entio

n &

Com

paris

onC

ompo

nent

s of

pre

-dia

lysi

s ed

ucat

ion

prog

ram

me

Sum

mar

y of

resu

lts

Yu Y

J et

al.

(201

4)16

-Tai

wan

RC

T w

ith

cost

-ana

lysi

s44

5 ad

vanc

ed

CKD

pat

ient

s:-2

32 P

DEP

-213

No

PDEP

Mea

n eG

FR 7

.49

± 3.

1 (M

PE) a

nd

7.87

± 3.

6 in

No

PDEP

gro

up

PDEP

vs.

No

PDEP

•Ed

ucat

ion

by m

ultip

le in

divi

dual

lect

ure

sess

ions

with

team

mem

bers

•C

ompr

ised

a n

urse

for c

ase

mx,

med

ical

so

cial

offi

cers

, die

titia

ns, H

D, P

D p

atie

nt

volu

ntee

rs a

nd n

ephr

olog

ists

•Le

ctur

es fo

cuse

d on

nut

ritio

n, li

fest

yle,

ne

phro

toxi

n av

oida

nce,

die

tary

pr

inci

ples

, and

pha

rmac

olog

ical

re

gim

ens

PDEP

gro

up h

ad s

igni

fican

tly:

•fe

wer

and

sho

rter l

engt

hs o

f ho

spita

lisat

ion

•lo

wer

car

diov

ascu

lar

hosp

italis

atio

n in

firs

t 6 m

onth

s po

st d

ialy

sis

•fe

wer

vas

cula

r acc

ess

rela

ted

surg

erie

s•

low

er to

tal m

edic

al c

ost i

n fir

st

6 m

onth

s af

ter H

D in

itiat

ion

and

low

er m

edic

al c

ost o

f inp

atie

nt

serv

ice

Wei

SY

et

al. (

2010

)17

Taiw

an

Ret

rosp

ectiv

e co

hort

stud

y-f/

up 6

m

onth

s be

fore

di

alys

is a

nd

at d

ialy

sis

initi

atio

n

140

inci

dent

ES

RD

:71

PD

EP69

No

PDEP

CKD

Car

e Pr

ogra

mm

e (P

DEP

) vs.

N

ephr

olog

ist

Car

e G

roup

(N

o PD

EP)

•Ed

ucat

ion

by m

ultip

le in

divi

dual

ses

sion

s w

ith te

am m

embe

rs•

Incl

uded

nep

hrol

ogis

ts, r

enal

nur

ses

and

diet

itian

s as

cor

e m

embe

rs o

f tea

m•

Diff

eren

t goa

ls a

nd e

duca

tion

cont

ents

, acc

ordi

ng C

KD s

tage

s an

d pr

e-se

t clin

ical

pro

toco

ls, d

eliv

ered

ap

prox

imat

ely

30–4

5 m

in a

t eac

h vi

sit.

PDEP

gro

up h

ad:

•hi

gher

cre

atio

n of

vas

cula

r ac

cess

bef

ore

dial

ysis

•Lo

wer

hos

pita

lisat

ion

for d

ialy

sis

initi

atio

n•

Mor

e fre

quen

t out

patie

nt v

isits

du

ring

6 m

onth

s be

fore

dia

lysi

s’ bu

t low

er h

ospi

talis

atio

n an

d sh

orte

r len

gth

of s

tay

‘at d

ialy

sis

initi

atio

n’Ye

oh H

H e

t al

. (20

03)18

-USA

Ret

rosp

ectiv

e co

hort

stud

y-f/

up 1

0 da

ys b

efor

e in

itiat

ion

and

90 d

ays

post

di

alys

is

103

patie

nts

with

C

KD:

-68

PDEP

-35

No

PDEP

PDEP

vs.

No

PDEP

•Ed

ucat

ion

by c

lass

es a

cc. t

o C

KD

stag

es:

Kidn

ey C

lass

- mild

to m

oder

ate

CKD

Cho

ices

Cla

ss-m

oder

ate

to s

ever

e C

KD

or a

bout

3 to

6 m

onth

s be

fore

dia

lysi

s•

Afte

r com

plet

ion

of c

lass

es, p

atie

nts

wer

e fo

llow

ed u

p by

team

mem

bers

in

clud

ed n

urse

s, n

ephr

olog

ists

, di

etiti

ans,

med

ical

soc

ial o

ffice

rs, c

ase

man

ager

s, a

nd p

harm

acis

ts

PDEP

gro

up h

ad s

igni

fican

tly:

•lo

wer

use

of t

empo

rary

cat

hete

rs•

low

er A

V gr

aft p

lace

men

t•

high

er P

D c

athe

ter p

lace

men

t•

low

er e

mer

genc

y ro

om v

isits

and

lo

wer

hos

pita

l sta

y

13



Stud

ySt

udy

desi

gnN

umbe

r of

pat

ient

sIn

terv

entio

n &

Com

paris

onC

ompo

nent

s of

pre

-dia

lysi

s ed

ucat

ion

prog

ram

me

Sum

mar

y of

resu

lts

Shuk

la

AM e

t al.

(201

7)19

-USA

Ret

rosp

ectiv

e C

ohor

t Stu

dy10

8 ad

vanc

ed

CKD

pat

ient

s- s

tage

4 a

nd

5 C

KD, w

ith

occa

sion

al

patie

nts

of s

tage

3b

CKD

Com

preh

ensi

ve

Pre-

dial

ysis

Ed

ucat

ion

Prog

ram

me

(PD

EP) v

s.

Esta

blis

hed

patie

nt p

roto

col

(No

PDEP

)

•G

roup

+ in

divi

dual

ses

sion

s w

ith te

am

mem

bers

•Af

ter g

roup

less

on, p

atie

nts

rota

ted

with

re

nal d

ietit

ian,

med

ical

soc

ial o

ffice

r, tra

ined

dia

lysi

s nu

rse

incl

udin

g ha

nds-

on/d

emo,

and

rena

l phy

sici

an fo

r pat

ient

-sp

ecifi

c di

scus

sion

s an

d de

taile

d on

the

indi

vidu

al n

eeds

and

que

stio

ns

•70

% o

f pat

ient

s in

MPE

gro

up

chos

e ho

me

dial

ysis

, of w

hich

, 55

% c

hose

PD

and

15%

cho

se

hom

e H

D

•PD

EP re

sulte

d in

216

% g

row

th in

ho

me

dial

ysis

cen

sus

over

sam

e pe

riod

de M

aar

JS e

t al.

(201

6)20

Amst

erda

m

Cro

ss-

sect

iona

l st

udy

102

CKD

pa

tient

s -M

ean

eGFR

12

.3 m

L/m

in/1

.73

m2 .

Stru

ctur

ed

pre-

dial

ysis

pr

ogra

mm

e (P

DEP

)

•Ed

ucat

ion

star

ts w

ith h

ome

visi

t, m

ultid

isci

plin

ary

mee

ting

•Af

ter m

eetin

g, s

peci

alis

ed p

re-d

ialy

sis

nurs

e pr

ovid

es e

duca

tion

tailo

red

to

patie

nt’s

profi

le +

trai

ning

, fol

low

ed b

y se

cond

mee

ting

and

final

cho

ice

of R

RT

Educ

atio

nal g

roup

had

:•

incr

ease

the

num

ber o

f pat

ient

s th

at c

hoos

e an

d re

ceiv

e ho

me

dial

ysis

(6

2.8%

afte

r pro

gram

me

vs 1

9%

befo

re)

14


Stud

ySt

udy

desi

gnN

umbe

r of

pat

ient

sIn

terv

entio

n &

Com

paris

onC

ompo

nent

s of

pre

-dia

lysi

s ed

ucat

ion

prog

ram

me

Sum

mar

y of

resu

lts

Cas

sidy

BP

et a

l. (2

018)

21

-Can

ada

Qua

litat

ive

stud

y12

par

ticip

ants

-4

pat

ient

s fro

m

each

dia

lysi

s m

odal

ity

(In-c

entre

HD

, PD

, Hom

e-PD

)

PDEP

•Ed

ucat

ion

by m

ater

ials

and

sm

all g

roup

se

ssio

ns•

Kidn

ey F

ound

atio

n of

Can

ada

bind

er, L

ivin

g w

ith K

idne

y D

isea

se,

4th

editi

on, 4

mul

timod

al s

mal

l gro

up

clas

ses,

pat

ient

par

tner

s, a

nd a

list

of

trust

ed C

KD o

nlin

e re

sour

ces

3 th

emes

influ

ence

d m

odal

ity

deci

sion

-mak

ing

proc

ess:

•

Patie

nt F

acto

rs (i

ndiv

idua

lisat

ion,

au

tono

my,

and

emot

ions

), •

Educ

atio

nal F

acto

rs (t

ailo

red

educ

atio

n, a

ppro

pria

te ti

me/

info

rmat

ion,

and

ava

ilabl

e re

sour

ces)

, •

and

Supp

ort S

yste

ms

(par

tner

ship

with

hea

lth c

are

team

and

fam

ily/fr

iend

s)

Dev

oe

DJ

et a

l. (2

016)

22

- 7 s

tudi

es

from

Nor

th

Amer

ica,

5

from

Eu

rope

, 3

from

Asi

a.

SR +

M

eta-

anal

ysis

15 s

tudi

es

incl

uded

:-7

pre

and

pos

t in

terv

entio

n st

udie

s,

-5 c

ohor

t stu

dies

-2 c

ase-

cont

rol

stud

ies

-1 R

CT

-Mea

n eG

FR

rang

ed fr

om

≤15

to 2

0.4

ml/

min

/1.7

3 m

2

Pre-

dial

ysis

ed

ucat

iona

l in

terv

entio

ns

(PD

EP)

vs. S

tand

ard

care

(No

PDEP

)

Vary

gre

atly

bet

wee

n st

udie

s•

7 st

udie

s in

clud

ed p

hysi

cian

as

an

educ

ator

, 10

incl

uded

a n

urse

, and

4

incl

uded

mul

tidis

cipl

inar

y te

am•

8 st

udie

s ca

rried

out

edu

catio

nal

inte

rven

tions

in g

roup

ses

sion

s, 5

had

1

to 1

ses

sion

onl

y an

d 2

incl

uded

bot

h

Educ

atio

nal g

roup

had

:•

incr

ease

in th

e od

ds o

f cho

osin

g PD

(2-4

x)•

3-fo

ld in

crea

se in

odd

s of

re

ceiv

ing

PD a

s th

e in

itial

tre

atm

ent m

odal

ity

15



Stud

ySt

udy

desi

gnN

umbe

r of

pat

ient

sIn

terv

entio

n &

Com

paris

onC

ompo

nent

s of

pre

-dia

lysi

s ed

ucat

ion

prog

ram

me

Sum

mar

y of

resu

lts

Prie

to-

Vela

sco

M e

t al.

(201

4)23

-9 re

nal

units

; 6 E

U

coun

tries

-2 u

nits

ea

ch in

UK,

Sw

eden

, Sp

ain

-3 u

nits

in

Fran

ce,

Belg

ium

, Ita

ly

Cro

ss-

sect

iona

l st

udy

4 nu

rses

, 5

neph

rolo

gist

s an

d 1

clin

ical

ps

ycho

logi

st

com

plet

ed

ques

tionn

aire

s ab

out t

heir

rena

l un

it

Ren

al

repl

acem

ent

ther

apy

optio

n ed

ucat

ion

(PD

EP)

•Fe

w h

ave

grou

p ed

ucat

ion

sess

ions

, m

ostly

indi

vidu

al s

essi

ons

•N

urse

s al

way

s in

volv

ed, w

ith

neph

rolo

gist

, die

titia

ns, p

sych

olog

ists

, m

edic

al s

ocia

l offi

cers

, onl

y 1

has

occu

patio

nal t

hera

py, p

hysi

o, p

harm

acis

t•

All h

ad b

ackg

roun

d in

gen

eral

or

neph

rolo

gy n

ursi

ng•

All i

nclu

des

patie

nts

with

CKD

sta

ge 4

or

5, a

nd fa

mily

mem

bers

•Ke

y to

pics

suc

h as

the

‘impa

ct o

f the

di

seas

e’ w

ere

cove

red

by e

very

uni

t, bu

t on

ly a

few

uni

ts d

escr

ibed

all

dial

ysis

m

odal

ities

•M

ost h

ave

visi

ts to

HD

, hom

e di

alys

is

Sam

e as

in c

ompo

nent

s of

pro

gram

me

Dan

guila

n R

A e

t al.

(201

3)24

Philip

pine

s

Pre-

and

pos

t-in

terv

entio

n st

udy

-f/up

6

mon

ths

299

CKD

pa

tient

s:60

% C

KD S

tage

5

and

19%

Sta

ge

4

PDEP

•Ed

ucat

ion

by m

ultip

le in

divi

dual

ses

sion

s w

ith te

am m

embe

rs•

Trai

ned

CKD

edu

cato

rs, a

nur

se a

nd

a ps

ycho

logi

st, c

ondu

cted

stru

ctur

ed

educ

atio

nal m

odul

es a

ccor

ding

to C

KD

stag

e•

Take

-hom

e m

ater

ials

afte

r eac

h vi

sit

Afte

r PD

EP:

•Si

gnifi

cant

incr

ease

in m

ean

over

all p

re-te

st s

core

s of

CKD

kn

owle

dge

(onl

y 28

% p

atie

nts

com

plet

ed th

e m

odul

es)

16


Stud

ySt

udy

desi

gnN

umbe

r of

pat

ient

sIn

terv

entio

n &

Com

paris

onC

ompo

nent

s of

pre

-dia

lysi

s ed

ucat

ion

prog

ram

me

Sum

mar

y of

resu

lts

Gar

cía-

Llan

a H

et

al. (

2014

)25

Spai

n

Pre-

and

pos

t- in

terv

entio

n st

udy

-f/up

6

mon

ths

42 C

KD p

atie

nts

Mea

n eG

FR

<20m

L/m

in/1

.73

m2

PDEP

•Ed

ucat

ion

by m

ultip

le in

divi

dual

ses

sion

s•

Patie

nt a

ttend

ed re

gula

r app

t with

ne

phro

logi

st, n

urse

and

nut

ritio

nist

•

Each

pat

ient

rece

ived

6 in

divi

dual

m

onth

ly fa

ce-to

-face

ses

sion

s w

ith

heal

th p

sych

olog

ist

Afte

r PD

EP:

•si

gnifi

cant

ly h

ighe

r lev

els

of

adhe

renc

e, lo

wer

dep

ress

ion

and

anxi

ety

leve

ls, a

nd b

ette

r H

RQ

L (i.

e., g

ener

al h

ealth

and

em

otio

nal r

ole

dom

ains

).

Can

kaya

E

et a

l. (2

013)

26

Turk

ey

Cro

ss-

sect

iona

l st

udy

88 li

ve d

onor

ki

dney

tran

spla

nt

reci

pien

ts:

-61

PDEP

-2

7 no

PD

EP

Pre-

dial

ysis

ed

ucat

ion

prog

ram

me

(PD

EP)

vs. N

o PD

EP

•Ed

ucat

ion

usin

g tra

inin

g ki

t•

Spec

ially

pre

pare

d ki

t usi

ng v

isua

ls

and

writ

ten

card

s w

ith 6

mod

ules

giv

en

acco

rdin

g to

CKD

sta

ges

PDEP

gro

up h

ad s

igni

fican

tly:

•H

ighe

r pre

-em

ptiv

e ki

dney

tra

nspl

anta

tion

rate

s co

mpa

red

to

no-P

DEP

gro

up(4

2.6%

vs

18.5

%, P

<0.0

01)

•H

ighe

r don

or tr

ansp

lant

atio

n ra

tes

from

spo

use,

sib

lings

and

ot

her r

elat

ives

C

ombe

s G

et a

l. (2

017)

12

UK

Qua

litat

ive

stud

ySe

mi-s

truct

ured

in

terv

iew

s in

4

hosp

itals

with

96

sta

ff an

d 93

di

alys

is p

atie

nts

PDEP

•Ed

ucat

ion

by o

ne to

one

ses

sion

s +

grou

p se

ssio

ns in

clud

ing

talk

s fro

m

patie

nts

on R

RT

+ w

ritte

n m

ater

ials

/DVD

s to

take

hom

e•

Hom

e vi

sits

by

nurs

e in

sev

eral

site

s

•M

ost p

atie

nts

repo

rted

PDEP

ov

eral

l hel

pful

•3

them

es re

late

d to

impr

ovin

g PD

E id

entifi

ed:

-sub

-opt

imal

edu

catio

n;

-diff

eren

t per

spec

tives

bet

wee

n pa

tient

s an

d st

aff;

-influ

ence

of p

atie

nt e

xper

ienc

e

Foot

note

: AV=

Art

erio

veno

us, C

KD

= C

hron

ic K

idne

y D

isea

se, E

SRD

=End

Sta

ge R

enal

Dis

ease

, eG

FR=

estim

ated

Glo

mer

ular

Filt

ratio

n R

ate,

H

D=H

aem

odia

lysi

s, P

D=P

erito

neal

Dia

lysi

s, P

DEP

=Pre

-dia

lysi

s Ed

ucat

ion

Prog

ram

me,

RR

T=R

enal

Rep

lace

men

t The

rapy

, SR

= Sy

stem

atic

R

evie

w, R

CT=

Ran

dom

ised

Con

trol

led

Tria

l, H

RQ

L=H

ealth

Rel

ated

Qua

lity

of L

ife

17



2.4.3 Risk of bias assessment:

Assessment for Systematic Review Studies Using Critical Appraisal Skills Programme (CASP) Checklist Figure 2 shows the summary of the risk of bias of the two included studies based on the Critical Appraisal Skill Programme (CASP) checklist. Both studies were overall at low risk of bias at all domain assessed. For Devoe DJ et al. (2016), meta-analysis was done on four observational studies on association of pre-dialysis educational interventions with the odds of choosing PD and the odds of receiving PD and reported heterogeneity of I2=76.7% and I2=24.9%, respectively.22

Criteria assessed

Aut

hors

look

for t

he ri

ght t

ype

of

pap

ers?

Sele

ctio

n of

stu

dies

(all

rele

vant

stu

dies

in

clud

ed?)

Asse

ssm

ent o

f qua

lity

of in

clud

ed

stud

ies?

If th

e re

sults

of t

he re

view

hav

e be

en

com

bine

d, is

it re

ason

able

to d

o so

(h

eter

ogen

eity

)?

Van den Bosch J et al. (2015)11 + + + ?Devoe DJ et al. (2016)22 + + + +

+ Indicates low risk of bias

? indicates unclear risk of bias

- Indicates high risk of bias

Figure 2: Assessment of risk of bias of SR

Randomised controlled trialsCochrane Risk of Bias Assessment tool was used to assess the risk of bias of the RCT includedin this review. The summary risk of bias assessment of the RCTs is shown in Figure 3.

Criteria assessed

Adeq

uate

seq

uenc

e ge

nera

tion

(sel

ectio

n bi

as)

Allo

catio

n co

ncea

lmen

t (s

elec

tion

bias

)

Blin

ding

of p

artic

ipan

ts a

nd

pers

onne

l (pe

rform

ance

bia

s)

Inco

mpl

ete

outc

ome

data

ad

dres

sed

(attr

ition

bia

s)

Sele

ctiv

e re

porti

ng (r

epor

ting

bias

)

Free

of o

ther

bia

s

Yu YJ et al. (2014)16 + ? ? + + +

18





Figure 3: Assessment of risk of bias of RCT

Yu Y et al. (2014) did not mention the detail of blinding as well as allocation concealment method and thus was classified as unclear risk of bias.16

Assessment Using NIH Quality Assessment Tool For Before-After (Pre-Post) Studies With No Control Group The risk of bias for Pre-Post studies with no control group was assessed using NIH Quality Assessment Tool. Two studies were included in this assessment. Figure 4. shows the summary of the risk of bias for the studies. Both studies have high risk of bias. Danguilan R A et al. (2013) had two high risk criteria which were loss to follow up more than 20% and the study did not use interrupted time series design.24 García-Llana H et al. (2014) had three high risk criteria which included small sample size, the study did not use interrupted time series design and did not take individual level data to determine effects at group level.25

CRITERIA ASSESSED Dan

guila

n R

A

et a

l. (2

013)

24

Gar

cía-

Llan

a H

et

al.

(201

4)25

Question or objective clearly stated? + +Eligibility/selection criteria for study population clearly described? + +Were participants representative for those who would be eligible for the test/ service/intervention in the population of interest?

+ +Were all eligible participants that met the pre-specified entry criteria enrolled? + +Sample size sufficiently large to provide confidence in findings? + -Test/service/intervention clearly described and delivered consistently? + +Outcome measures pre-specified, valid, reliable, and assessed consistently? + +People assessing the outcome measures blinded to participants exposure/ interventions?

NA NA

Loss to follow-up after baseline 20% or less? Loss to follow-up accounted for in the analysis?

- +Statistical methods examine changes in outcome measures from before to after intervention? P value?

+ +Outcome measures taken multiple times before and after intervention? Use interrupted time-series design?

- -

19



If intervention conducted at group Level, did statistical analysis take into account of individual Level data to determine effects at group Level?

+ -




Figure 4: Assessment of risk of bias of (Pre-Post) Studies with No Control Group

2.4.4 EFFECTIVENESS Four studies reported on effectiveness of PDEP for advanced CKD patients, of which one

was SR, two cohort studies and one retrospective cohort study.

2.4.4.1 Peritonitis and peritonitis-related death Hsu CK et al. (2018) conducted a cohort study in PD patients in Taiwan to investigate the

impact of PDEP on the occurrence of peritonitis, time to first episode of peritonitis and patient outcomes. The study involved 398 patients starting PD at Chang Gung Memorial Hospital, Keelung, Taiwan. Patients were divided into PDEP group (n = 169) and no- PDEP group (n = 229) according to whether the subjects had ever received PDEP before starting RRT. Pre-dialysis education programme (PDEP) recipients were older (63.1±16.2 vs. 58.5±16.4 years old, P = 0.006), were less likely to be man (39.1% vs. 52%, P = 0.01) but had higher prevalence of diabetes (60.4% vs. 43.7%, P< 0.001) compared to the no-PDEP recipients. The PDEP group also had lower baseline educational levels (P < 0.001) and were more likely to use automated PD than patients of no-PDEP group (49.7% vs. 39.7%, P = 0.05). Pre-dialysis education programme (PDEP) was described in the study as education given by a team which comprised of a nurse of case management, medical social officers, dietitians, 10 nephrologists, and HD and PD patient volunteers. The programme included multiple individual sessions on nutrition supplement, lifestyle modification, nephrotoxin avoidance, dietary principles and pharmacological regimens by case-management nurse, according to their CKD stage by National Kidney Foundation Dialysis Outcomes Quality Initiative (NKF/DOQI) guidelines. Monitoring of CKD complications, preparation for timely initiation of RRT, care of vascular or peritoneal access, and registration for inclusion in the renal transplant waiting list were also instructed for late stage CKD patients. Different modality of RRT as well as their benefit, disadvantage and self-care knowledge were explained. Shared decision making was performed for these patients for their choice of renal replacement modality selection. All patients also received dietary counseling biannually from a dietitian. The programme was discontinued once the patients initiate dialysis therapy. Meanwhile, patients in the no-PDEP group received customary care from the same group of nephrologists, who instructed patients regarding the renal function, evaluation of laboratory data and the clinical indicators of renal failure as well as treatment strategies. Writing materials or booklets were given to patients if needed. All patients were subsequently followed up for five years. Incidences of peritonitis and peritonitis-related mortality were compared between the two groups.13 Level II-2

The results showed that after five years of follow-up, the PDEP patients had significantly less peritonitis [0.29±0.72 vs. 0.64±1.5 episodes/person-year or median (Interquartile range, IQR): 0 (0.29) vs. 0.11 (0.69) episodes/person-year, P < 0.001] than no-PDEP patients. The PDEP group had lower peritonitis-related death rates compared to no-PDEP group (3.6% vs. 8.7%, P = 0.04). Patients in the PDEP group had longer median time to first episode of

20


peritonitis compared the no-PDEP group (46.7 months vs. 33.9 months, P = 0.003). Cox regression analysis revealed that the educational level below elementary [hazard ratio (HR): 1.925; 95% (CI): 1.257, 2.874, P = 0.003] and the use of PDEP (HR: 0.594; 95% CI: 0.434, 0.813, P < 0.001) were significant independent predictors for peritonitis-free survival, after adjusting the baseline characteristics of age, gender, diabetes, hypertension and peritoneal modalities. The authors concluded that an efficient standardised PDEP adhered to the NKF/DOQI guidelines may prolong the time to the first episode of peritonitis and reduce peritonitis rate, independent of age, gender, diabetes, hypertension, educational status and PD modality. Subsequently, decreased peritonitis-related death. The findings provided basis for strategic implementation of PDEP as an efficient method to improve dismal outcome of PD patients.13

Level II-2

2.4.4.2 Survival rate Zukmin K et al. (2017) conducted a retrospective cohort study in Brunei to compare survival probability, sociodemographic, and clinical characteristics of multidisciplinary pre-dialysis educated (PDEP) and no-PDEP/crashlander patients. A total of 350 new cases of ESRD from Raja Isteri Pengiran Anak Saleha Hospital and all dialysis centers in Brunei Darussalam were included in the study. Data were extracted from the computerised clinical registry and patients’ dialysis records. Data extracted included sociodemographic information, clinical information, survival status, pre-dialysis clinic referral, choice of RRT, and types of vascular access (for HD patients). Patients were divided into PDEP group (n = 180) and no-PDEP group (n = 168) according to whether the subjects had ever received PDEP before starting RRT. The PDEP groups were more likely to be older (P = 0.001), diabetics (P = 0.013), and hypertensive (P = 0.016), have ischemic heart disease (P = 0.014), and to be using arteriovenous fistula (P < 0.001). Pre-dialysis education programme (PDEP) was provided in the settings by a multidisciplinary team of professionals which included nephrologists, nurse practitioners, dieticians, and medical social officers. Nurse practitioners comprise specific nurses that specialize in vascular access, HD, PD and transplantation. Geriatricians and palliative care team occasionally involved if patients have pre-emptively decided not to undergo RRT. Clinics were focused on strategies to maintain target blood pressure, improve compliance with medications, nutritional needs, nephrotoxins avoidance, and fast track vascular services for fistula formations and early commencement of RRT. Cultural acceptance and religious counselling were also covered in the clinic to overcome social stigmatisation and improve psychological acceptance. Survival probability, sociodemographic, and clinical characteristics of PDEP and no-PDEP/crashlander patients were compared. The results showed that despite being older and having more comorbidities, PDEP patients have better survival probability (P = 0.028) and a 34% decreased risk of dying. The one-year survival rate was higher in the PDEP group compared to no-PDEP group (79.8% vs. 66.2%, respectively). No significant difference reported for survival rates after two years (57.7% and 60.1%, respectively). The authors concluded that PDEP before the initiation of RRT contributed to greater survival probability in near ESRD patients. The survival benefits were evident despite the presence of inherent risks (older age and presence of comorbidities) in the PDEP population in comparison with the no-PDEP group.14 Level II-2

2.4.4.3 Morbidity and mortality A systematic review was conducted by Van den Bosch J et al. (2015) to review evidence on effective components of PDEP as related to modality choice and selected clinical outcomes. Systematic search was performed on PubMed MEDLINE, Cochrane Library, and Ovid (from January 1, 1995 to December 31, 2013) for studies done on pre-dialysis education programme. Literature also reviewed for any information on processes, pathways, and organisation of the pre-dialysis education programme. The review included 29 relevant studies which consisted of 19 quasi-experimental design and 10 narrative reviews. Nineteen studies were analysed for effective components of PDEP. Descriptions of the educational process varied and included individual and group education, multidisciplinary intervention, and varying duration and frequency of sessions. The review found that there were eight

21



studies reported on mortality and morbidity including biochemical indicators, cardiovascular incidents, infection rates, emotional status (Table 3). All studies reported better rates for the group that received pre-dialysis education.11 Level I

Table 3: Studies which reported on mortality and morbidity

Studies Results

Cho et al. (2012)Less unplanned urgent dialysis (8.7% vs 24.2%),

Less cardiac events (2.7% vs 9.4%), less infections (4.0% vs 12.1%)

Klang et al. (1998) Significant better mood, less mobility problems, less functional disabilities and lower anxiety

Lacson et al. (2011) Significant better survival rate (adj. HR 0.61)

Levin et al. (1997) Better biochemical markers: blood pressure, calcium, phosphate, and anemia

Rioux et al. (2011) 35% of all acute starters adopted home dialysis vs 13% before program

Hall G et al (2004) Less infection rates 18.5 vs. 31.8; (p = 0.00349)

Souqiyyeh M Z et al. (2008) Significantly less dropouts for PD (p < 0.02)

Wu IW et al. (2009) conducted a cohort study in Taiwan to evaluate the impact of PDEP on the incidence of dialysis and outcomes of CKD patients in accordance with the guidelines of the National Kidney Foundation Dialysis Outcomes Quality Initiative (NKF/DOQI). The study involved 573 pre-dialysis CKD patients who visited the nephrology outpatient clinics of the Department of Nephrology at Chang Gung Memorial Hospital in Taipei and Keelung from May 2006 to May 2007. Patients were classified into stages 3, 4 or 5 in accordance with the NKF/DOQI classification system. All patients were divided into two cohorts according to the sites; PDEP group at the Keelung centre (n = 287) and no-PDEP group at Taipei centre (n = 286). Pre-dialysis education programme (PDEP) were described given in multiple individual sessions with team members which comprised of a nurse for case mx, medical social officers, dietitians, HD and PD patient volunteers and 10 nephrologists. Programme consisted of integrated course involving individual lectures on renal health, delivered by case-management nurse that focused on nutrition, lifestyle, nephrotoxin avoidance, dietary principles and pharmacological regimens. Standardised interactive educational sessions were conducted intermittently where all patients were interviewed depending on the CKD stage. For stage 3 CKD patients, programme consisted of lectures on healthy renal function, clinical presentation of uraemia, risk factors and complications associated with renal progression and an introduction to the various RRTs. For stage 4 CKD patients, programme included discussions on the management of complications associated with CKD, indications of RRT and evaluation of vascular or peritoneal access. For stage 5 CKD patients, programme included monitoring for timely initiation of RRT, care of vascular or peritoneal access, dialysis-associated complications and registration for inclusion in the renal transplant waiting list. Patients in Stage 3 or 4 CKD were followed-up three-monthly while patients in stage 5 CKD were followed-up monthly. In contrast, patients in customary care group (no-PDEP) were attended by same group of nephrologists who instructed patients regarding renal function, evaluation of laboratory data and clinical indicators of chronic renal failure as well as strategies for its management and treatment. General principles of HD and PD explained when patients enter stage 4 CKD and patients were provided with written instructions. Patients from both

22


groups were followed up for 12 months for dialysis initiation or mortality from any cause.15 Level

II-2

The study showed that dialysis was initiated in 13.9% of patients in the PDEP group and 43% of the patients in the no-PDEP group, (P < 0.001). Time to dialysis was significantly longer for PDEP group (11.3 months) compared to no-PDEP group (9.2 months) (P < 0.001). Patients in the PDEP group showed better blood profiles [higher serum albumin level (3.8 ± 0.5 vs. 3.4 ± 0.5 g/dL), P = 0.050; lower serum high-sensitive C-reactive protein (hs-CRP) level (3.3±2.8 vs. 5.5±5.6 mg/L), P = 0.032; lower serum ferritin concentration (284 ± 31 vs. 532 ± 59 ng/mL), P = 0.049], higher PD uptake (35% vs. 20.5%, P = 0.023), lower frequency of temporary vascular catheter use (25% vs. 50.4%; P < 0.05) and greater post-dialysis body weights (65±10 vs. 58±11 kg, P = 0.034) than the no-PDEP patients. Overall mortality was reported lower for the PDEP group than the no-PDEP group (1.7% vs.10.1%, P < 0.001). Patients in the PDEP group had higher median survival time compared to the no-PDEP group (11.9 months vs. 11.2 months, P < 0.001). Adjusted hazard ratio (HR) of mortality for PDEP recipients was 0.103 [95% confidential interval (CI) 0.040, 0.265, P < 0.001], after adjustment for age, gender, diabetes, hypertension, eGFR, Hb, serum albumin and hs-CRP. Cox regression analysis revealed that diabetes, eGFR, hs-CRP level and PDEP assignment were significant independent predictors for progression to ESRD. Independent prognostic factors for mortality included age, diabetes, eGFR, hs-CRP and PDEP assignment. The authors concluded that efficient standardised PDEP complying with the NKF/DOQI guidelines may decrease the incidence of dialysis and reduce the all-cause mortality and the overall hospitalisation rate in CKD patients. This valuable information confirms the role of PDEP in the care of CKD patients.15 Level II-2

2.4.5 SAFETY There was no retrievable evidence in the scientific databases on the safety of PDEP for

advanced CKD patients.

2.4.6 ORGANISATIONAL 2.4.6.1 Hospitalisation and length of stay There were one SR, one RCT, two cohort studies, and two retrospective cohort studies which

reported on hospitalisation and length of stay.

In the cohort study which was conducted by Hsu CK et al. (2018), investigating the impact of PDEP on PD patients in Taiwan, reported that after five years of follow-up, there was no significant difference between patients in PDEP group and no-PDEP group in frequency of hospitalisation [median (IQR), episodes/person-year : 1.36 (2.43) in PDEP group vs. 1.15 (2.04) in no-PDEP group, P = 0.66] and the percentage of technique failures requiring shifting of modality to HD [due to either peritonitis; 9.5% in PDEP group vs. 11.8% in no-PDEP group, or poor fluid management; 1.8% in PDEP group vs. 2.2% in no-PDEP group].13 Level II-2

The SR by Van den Bosch J et al. (2015) which examined the evidence on the effective components of PDEP, reported that there were two quasi-experimental studies mentioned on length of hospital stay, which was lower for the education groups (6.5 vs. 13.5 total hospital days; 2.2 vs. 5.1 hospital days/patient per year).11 Level I

Yu YJ et al. (2014) conducted an RCT in Taiwan involving 445 advanced CKD patients who were randomly assigned to PDEP group (n = 232) and no-PDEP group (n = 213). Pre-dialysis education programme (PDEP) in this setting consisted of an integrated course involving individual lectures on renal health, delivered by the case-management nurse. The individual lectures focused on nutrition, lifestyle, nephrotoxin avoidance, dietary principles, and pharmacological regimens. The programme team involved a nurse for case management, medical social officers, dietitians, HD and PD patient volunteers and 10 nephrologists.

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Standardised interactive educational sessions were periodically conducted wherein all patients were interviewed depending on their CKD stage, determined earlier by using the NKF/DOQI guideline. Stage 3 or 4 CKD patients were followed up every three months, and stage 5 CKD patients were followed up on a monthly basis. For stage 4 CKD patients, the programme included discussions on the management of complications associated with CKD, indications of RRT, and the evaluation of vascular or peritoneal access. For stage 5 CKD, patients were monitored for timely initiation of RRT, the care of vascular or peritoneal access, dialysis-associated complications, and registration for inclusion in the renal transplantation waiting list. All patients received dietary counselling biannually from a dietitian. In addition, case-management nurse often contacted the participants by telephone to encourage them to inform their nephrologists of their symptoms and to reinforce the importance of medical visits. The programme was discontinued once RRTs were initiated. On the other hand, patients in the no-PDEP group were attended by same group of nephrologists who instructed patients regarding renal function, evaluation of laboratory data and clinical indicators of chronic renal failure as well as strategies for its management and treatment. General principles of HD and PD explained when patients enter stage 4 CKD and patients were provided with written instructions.16 Level II-1

The study reported that PDEP patients had significantly fewer and shorter lengths of hospitalisation than the no-PDEP patients (median (IQR) 0 (15) vs. 8 (27) days, P<0.001). Eighty-eight (37.9%) patients in the PDEP group had at least one hospitalisation, compared with 127 patients (59.6%) in the no-PDEP group (P<0.001). Cardiovascular disease (including uncontrolled hypertension, coronary artery disease, stroke, heart failure, and peripheral artery occlusive disease) was the main cause of first hospitalisation in all patients. The PDEP patients had lower cardiovascular hospitalisation in the first six months post dialysis (18.53% vs. 29.58%, P=0.007) and fewer vascular access related surgeries during the first admission (15.09% vs. 25.82%, P=0.005) compared to the no-PDEP patients.16 Level II-1

Wei SY et al. (2010) conducted a retrospective cohort study involving 140 incident ESRD patients who started HD from August 2004 to July 2005 from the two study hospitals in Taiwan to evaluate the effectiveness of CKD care programme (PDEP) on pre-ESRD care. Patients were divided into two groups; CKD group who received PDEP for at least six months before initiation of HD (n=71) and ‘Nephrologist Care Group’ (no-PDEP) who were cared for by nephrologists alone for at least six months before initiation of dialysis (n=69). The PDEP included nephrologists, renal nurses and dietitians as the core members of a multidisciplinary team responsible in caring for patients at different CKD stages. Patients were invited to join the care program by the nephrologist and were referred to well-trained renal nurses and dieticians. Different goals and education contents were planned according to stages of CKD and pre-set clinical protocols, and were delivered systematically approximately 30 to 45 minutes at each visit. Every patient received follow-up visits with clinical evaluation, laboratory examinations, nursing and dietary education, which was taken every three months for CKD stages 3 and 4, and every one to two months for stage 5 CKD patients. Main goals of the programme included delaying the deterioration of renal function, early preparations for dialysis, reducing of risk of complications, and ensuring smooth and safe transition to RRT. In contrast, “Nephrologist Care Group” were all treated by nephrologists from the same department, but they did not receive nursing education and dietary counselling by CKD nurses and dieticians. Principle of CKD care, including medications and early preparation of vascular access were routinely delivered to patients by the nephrologists. Patients were followed-up six months before dialysis and at dialysis initiation. Dialysis initiation was the end-point of observation. Quality indicators for evaluation included status of recombinant human erythropoietin (rHuEPO) treatment, vascular access preparation and hospitalisation for initiation of dialysis, were compared between two groups.17 Level II-2

24


The study found that PDEP group had higher creation of vascular access before dialysis. Vascular access had been created before HD in 57.7% of patients in the PDEP Group vs. only 37.7% of the no-PDEP group (P=0.017). Percentage of patients who started HD with created vascular access without the insertion of double lumen catheter was 50.7% PDEP, vs. 29.0% in the no-PDEP group (P=0.009). Percentage of patients who were not hospitalised for initiation of HD was 40.8% in PDEP group, vs. 18.8% in the no-PDEP group (P<0.005). Most patients in no-PDEP group (81.2%) had their first HD through inpatient HD. In terms of frequency of services utilisation, the PDEP group had more frequent outpatient visits during six months before dialysis ((9.9 ± 5.5 vs 5.5 ± 5.5 times/patient, P<0.001), but lower percentage of hospitalisation at dialysis initiation (59.2% vs 81.2%, P= 0.005), and shorter length of stay (6.6days ± 16.2 vs. 16.2days ± 16.2, P <0.001) compared to the no-PDEP group.17 Level II-2

In another cohort study which was conducted by Wu IW et al. (2009) in Taiwan, reported that the one-year hospitalisation rate was lower in the PDEP patients than in the no-PDEP patients (2.8% vs. 16.4%, P=0.034). However, the reason for hospitalisation did not differ significantly between them.15 Level II-2

Yeoh HH et al, (2003) conducted a retrospective cohort study in the United States of America (USA), to compare patients who had PDEP with those who did not due to late referral or refusal to participate, in terms of hospitalisations, emergency room visits and dialysis access placement. The charts of 103 CKD patients who were seen in clinic from 1997 to 2000 were retrospectively reviewed. Data on 68 patients who elected to participate in the pre-dialysis classes and 35 patients who decided not to participate in the classes in spite of encouragement to do so or were referred late and required immediate dialysis were reviewed. The PDEP team who were involved in the delivery of education and care of patients consisted of nurses, nephrologists, dietitians, medical social officers, case managers, and pharmacists. The programme comprised of two separate classes given according to the CKD stages; Kidney Class for patients mild to moderate renal impairment and Choices Class for patients with moderate to severe renal disease or about three to six months before dialysis will be needed. The Kidney Class covered general information about kidney disease, causes of renal failure, and its manifestation. The Choices Class covered options in RRT including HD, PD and renal transplantation. Once the patients attended the classes, they were followed-up by all the members of the team regularly. Data from period beginning 10 days before the initiation of dialysis to 90 days after the first dialysis, for a total period of 100 days was obtained. This period captures hospitalisation for initiation of dialysis. Data for each variable were compared for patients who attended the pre-dialysis class and those who did not. The results showed that compared to the group without PDEP, PDEP group had lower percentage of use of temporary catheters (4.4% vs. 37%, P < 0.001), lower incidence of AV graft placement (18% vs. 51%, P < 0.001) and higher incidence of PD catheter placement (31% vs. 11.4%, P = 0.03). Patients in the PDEP group had lower emergency room visits (0.57 vs. 1.1 per patient, P = 0.035) and lower average length of hospital stay per patient (1.4 days vs. 9.9 days per patient, P < 0.001) than those in no-PDEP group.18 Level II-2

2.4.6.2 Components of programme There was substantial variation noted in various PDEP described in the included studies.

Summary of the components of PDEP in each study which was included in this review were tabulated in Table 2.

Multidisciplinary team

Most studies [Hsu CK et al. (2018), Zukmin K et al. (2017), Wu IW et al. (2009), Yeoh HH et al. (2003), Yu YJ et al. (2014), Shukla AM et al. (2017), de Maar JS et al. (2016), Cassidy BP et al. (2018)] mentioned the involvement of multidisciplinary team in their PDEP. The team

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almost always comprised of nephrologists, nurses, dietitians, and medical social officers. Few had clinical psychologist, pharmacist, and patient volunteers.13 Level II-2, 14 Level II-2, 15 Level II-2, 16

Level II-1, 17 Level II-2, 19 Level II-2, 20 Level II-3, 21

A systematic review and meta-analysis was conducted by Devoe DJ et al. (2016) to examine the relationship between patient-targeted educational interventions and choosing and receiving PD. Fifteen studies of educational interventions designed to increase PD selection were included in the review which consisted of: seven pre- and post- intervention studies, five cohort studies, two case-control studies and one RCT. Of 15 studies, two were excluded from meta-analysis due to missing information. Seven studies from North America, five from Europe and three from Asia. Number of participants ranged from 63 to 21,302 for a total of 31,653. Mean eGFR ranged from ≤15 to 20.4 ml/min/1.73 m2. There was great variation of the educational interventions between the studies. Seven studies included physician as an educator, 10 included a nurse, and four included multidisciplinary team. Four studies included family members in educational interventions.22 Level I

In the systematic review done by Van den Bosch J et al. (2015), the studies included addressed components of PDEP established. Seven articles retrieved from the scientific literature review described PDEP which consisted of multiple education sessions where patients were educated by three or more health care professionals such as nephrologist, nurse, dietitian, medical social officer, home-dialysis coordinator, pharmacist, technician, or by other dialysis patients.11 Level I

Prieto-Velasco M et al. (2014) conducted a cross-sectional study to assess on how is RRT option education being run in European Union (EU) countries. Experts comprised of four nurses, five nephrologists and one clinical psychologist from nine renal units; two units each in UK, Sweden, Spain and three units in France, Belgium, Italy, completed a questionnaire on RRT option education in their unit. The study showed that nurses were almost always responsible for organising the education programme. Seven units also involved nephrologists, five units involved dietitians, four units involved psychologists and three units involved medical social officers. All staff involved had background in general or nephrology nursing.23 Level II-3

Delivery style

Most studies included in this review described PDEP in their settings, which were delivered in multiple individual sessions with mostly multidisciplinary team members as reported in Hsu CK et al. (2018), Zukmin K et al. (2017), Yu YJ et al. (2014), Wu IW et al. (2009), Danguilan R A et al. (2013), García-Llana H et al. (2014), de Maar JS et al. (2016), Cankaya E et al. (2013) and Wei SY et al (2010).13 Level II-2, 14 Level II-2, 15 Level II-2, 17 Level II-2, 15 Level II-2, 20 Level II-3, 24, 25 Level II-3, 26 Level II-3,

Mixed of individual sessions and group sessions has been described in Yeoh HH et al. (2003), Shukla AM et al. (2017), Cassidy BP et al. (2018) and Combes G et al. (2017).18 Level II-2, 19 Level

II-2, 21, 27 Few studies including Hsu CK et al. (2018), Wu IW et al. (2009), Yu YJ et al. (2014), Cassidy BP et al. (2018) and Combes G et al. (2017) described patients involvement in their PDEPs such as giving talks and sharing sessions.12,13 Level II-2, 15 Level II-2, 16 Level II-1, 21

A systematic review and meta-analysis which was conducted by Devoe DJ et al. (2016), reported that of 15 studies included in their review, eight studies carried out educational interventions in group sessions, five had one to one session only and two included both.22 Level I

Van den Bosch J et al. (2015) reported in their systematic review that education delivery style can either be one-on-one sessions or class room teaching style, but a mix of one-on-one and group sessions were advocated. Educational programmes should contain individualised one-on-one counselling sessions with a member or members of multidisciplinary team. In addition to small group discussions, peer counselling and problem-solving or “brainstorming” sessions

26


have been described wherein patients discuss treatment modalities, barriers and benefits, and troubleshooting of possible problems with other patients or facilitators. Various formats have been described for group sessions such as group lectures, interactive workshops, or open forum sessions.11 level I

Prieto-Velasco M et al. (2014) reported that most renal units included patients visit to in-centre HD unit (8/9 units) and home-dialysis nurse visit to assess suitability (7/9 units). Half of the renal units have formal meeting with ‘expert patient’ as part of the education programme. Group education sessions were used in 3/9 units.23 Level II-3

Frequency, follow-up and duration

Most studies included described the frequency of the sessions and follow-up depended on the stages of CKD. Some studies mentioned stage 3 or 4 CKD patients were followed up every three months while stage 5 CKD patients were followed-up on a monthly basis.15 Level II-2,

16 Level II-1, 17 Level II-2 Devoe DJ et al. (2016), reported that of 15 studies included in their systematic review, eight studies carried out educational interventions two or more days.22 Level I Van den Bosch J et al. (2015) reported that number of sessions and duration per session varies by educational program. There were reports of six individual sessions of one hour, four sessions, one night a week for two hours; or at least four to five interviews.11 Level I

Timing

Van den Bosch J et al. (2015) reported that an estimated glomerular filtration rate of less than 30 mL/min (stage 4 CKD) has been reported as ideal for referral to CKD clinic.11 Level I Others recommended that patients should be referred as early as possible to renal education (less than six months).11 Level I Prieto-Velasco M et al. (2014) reported that education programme for the patient and family began several months before dialysis or according to disease progression and all nine renal units evaluated in their studies have included patients with CKD stage 4 or 5 in the programme.23 Level II-3

Content and structure

There was variation in the content and structure of each pre-dialysis education programme described in the included studies. Most studies reported that the content of the education programme was largely focused on knowledge on nutrition, lifestyle modification, nephrotoxin avoidance, and compliance to medications and tailored according to the patients’ CKD stage.13 Level II-2, 14 Level II-2, 15 Level II-2, 16 Level II-1, 17 Level II-2, 18 Level II-2 Knowledge on preparation for RRT and modality choices as well as fast track vascular services for fistula and early commencement of RRT were given to the patients in advanced CKD stage. 13 Level II-2, 14 Level II-2, 15 Level II-2, 16 Level II-1,

17 Level II-2, 18 Level II-2 Zukmin K et al. (2017) reported that in their PDEP, cultural acceptance and religious counselling were also been covered.14 Level II-2 Shukla AM et al. (2017) mentioned hands-on or demonstration session by trained dialysis nurse.19 Level II-2 A systematic review and meta-analysis which was conducted by Devoe DJ et al. (2016), reported that of 15 studies included in their review, five studies included information on diet, six studies used video material, seven used printed materials, and one used website materials.22 Level I Cankaya E et al. (2013) used specially prepared training kit using visuals and written cards according to CKD stages for patients in their education programme.26 Prieto-Velasco M et al. (2014) reported key topics such as the ‘impact of the disease’ were covered by every unit, but only a few units described all dialysis modalities.23 Level II-3 Materials used in the nine renal units assessed came in a wide variety of forms and from a wide range of sources.23 Level II-3 Booklets were used in all units, online materials and DVDs were used in half of units.23 Level II-3 Cassidy BP et al. (2018) gave a list of trusted CKD online resources21 while Combes G et al. (2017) and Danguilan R A et al. (2013) mentioned take-home materials for patients after each visit.12,

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Training

Most studies did not specify details on training for their multidisciplinary team members in PDEP. Only Prieto-Velasco M et al. (2014) reported that all staff administering the programme had a background in general or nephrology nursing.23 Level II-3 Other studies included Shukla AM et al. (2017), Danguilan R A et al. (2013), Wei SY et al (2010) and García-Llana H et al. (2014) only mentioned involvement of trained staff but there was no description of the kind of trainings received by them.19 Level II-2, 24, 17 Level II-2, 25 Level II-3

2.4.6.3 Guidelines

A position statement was compiled by Bagnis C I et al. (2015) following an expert meeting in Zurich, Switzerland in March 2013, involving six nephrologists, eight nurses and one clinical psychologist from a spread of 12 European renal units with established RRT option education programmes. This position statement outlined clear recommendations on important aspects of the programme based on current evidence and in the context of pre-existing guidelines including guidelines from National Collaborating Centre for Chronic Conditions, Royal College of Physicians, UK, The Renal Association, UK, Haute Autorité de santé, France, and Dialysis Advisory Group of the American Society of Nephrology, USA. Overview of the recommendations are as follows27:

vWho should be in the team?The team consists of a nephrologist and a CKD nurse, at a minimum. Optimally, additional members of the team include a dietitian, a psychologist, a medical social officer, a physical therapist and an expert patient.

vWhat knowledge, training and experience should the team have?Knowledge of CKD and hands-on experience of all treatment modalities are minimum requirements for the team members. Optimally, the team also has training in the principles of adult education, motivational interviewing / communication skills and how to avoid bias when giving information.

vWhen should the programme begins?Starting the programme at least 12 months before the predicted start of dialysis allows time to establish dialysis access, for the patient to accept their situation, and take part in the decision-making. If this is not possible, then the programme begins upon referral for dialysis. Optimally, commencement of the programme is based on the level of disease (CKD Stage 4, progressive) and the rate of disease progression.

vWho should receive?The programme is made available to patients in CKD Stage 4 and Stage 5 (planned and unplanned starts), patients expressing an interest in changing modality and all patients upon request. Optimally, family, friends or caregivers of patients also attend the programme.

vShould the programme be individualized? If so, how?The programme ends when the patient has sufficient knowledge to make an informed decision regarding treatment modality. A more individualised approach to the programme is warranted if the patient does not have sufficient knowledge. Optimally, the following are available: (i) A key contact person is present to help the patient work through the material in

the order and speed of the patient’s choosing and help deal with psychological aspects of the disease.

(ii) There are regular updates on the patient’s condition between the education team and the patient’s general practitioner (GP).

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(iii) There is regular contact between the patient and the nephrologist/nurse. (iv) There is an option for the programme to be delivered in the patients’ preferred

place (i.e. home or hospital), within time and budget constraints.

vHow many sessions are required?At least one session is required. Optimally, as many sessions as required to independently reach an informed and balanced decision on modality are held.

vWhen should finish?Programme finishes when the predefined objectives have been met. Optimally, the programme finishes when the patient has chosen a form of RRT, with regular follow-ups being conducted into the treatment phase.

vWhat topics should be included?The minimal topics covered in all programmes are: (i) Topics requested by the patient. (ii) Unbiased information on CKD and the four treatment options [HD, PD,

transplantation and conservative care], and how well they match the patient’s beliefs and values.

(iii) An explanation that it is possible for the patient to change modality if there are no contraindications.

(iv) Clarification of the patient’s right to stop dialysis. (v) Ways to delay disease progression.

Optimally, the following topics are also covered: (i) Interviews to understand the patient’s history, lifestyle, pain levels,

comorbidities, physical activity levels, diet, culture, beliefs, wishes and expectations, what the patient knows and wants to know about the disease, patient’s social network, how much the patient wants to be involved in the treatment.

(ii) Implications of CKD upon finances (reduced capacity to work, insurance, treatment costs).

(iii) Impact of CKD upon QoL. (iv) Dealing with emotional stress. (v) Practical topics (e.g. transportation to/from treatments, contacting a patient

association, and making an advanced healthcare directive). (vi) Understanding kidney function test results and blood test results. (vii) Timing of placement of dialysis access. (viii) Medication required.

vWhat materials/resources should be used?Following materials / resources are used in the programme: (i) One-to-one meetings with staff at the unit. (ii) Written booklets appropriate to disease stage, level of education and cultural/

religious background. (iii) Multimedia showing the dialysis modalities in action.

Optimally, the following materials/resources are also used: (i) Patient decision aids(ii) Tours of dialysis facilities(iii) Online material (carefully chosen websites)(iv) Meetings with expert patients. (v) Videos including interviews with dialysis patients. (vi) Group education sessions may be considered.

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vHow should the programme takes account of language and cultural differences?Medical interpreters are necessary and translations of the written material available for key culturally and linguistically diverse populations. Optimally, picture sets are available for sessions with these patients. Religious and cultural perspectives are important with regards to all treatment options. Cultural differences impact the perceived roles of doctor/patient and understanding of health/disease.

vHow should the quality of the programme be evaluated?A quality evaluation uses one or more of the following indicators:(i) The percentage of patients starting treatment with the modality they chose at

the end of the programme(ii) Proportion of planned initiations with established access/pre-emptive

transplantation. (iii) Patient satisfaction with modality choice (iv) Proportion of patients who have undergone a formal education programme

prior to initiation of RRT. (v) Patient satisfaction with the level of information they have received. (vi) Register of patients with End of Life Care needs. (vii) Proportion of those patients identified as having End of Life Care needs who

have a workable Advance Care Plan.

Optimally, one or more of the following indicators can be used: (i) QoL measurements (ii) Measurement of patient involvement(iii) Clearly defined: target population; objectives; curriculum; pedagogical tools;

criteria for evaluating effectiveness (including clinical, QoL); and sources of finance

This position statement endorses current guidelines, and offers further guidance to ensure patients receive high-quality education aimed at helping them make an informed choice of modality.27

The National Kidney Foundation’s Kidney Disease Outcomes Quality Initiative (KDOQI) has provided evidence-based guidelines for all stages of CKD and related complications since 1997. The 2015 update of the KDOQI Clinical Practice Guideline for Haemodialysis Adequacy is intended to assist practitioners caring for patients in preparation for and during haemodialysis. In this updated guideline, it is stated that patients who reach CKD stage 4 (GFR <30 mL/min/1.73 m2), including those who have imminent need for maintenance dialysis at the time of initial assessment, should receive education about kidney failure and options for its treatment, including kidney transplantation, PD, HD in the home or in-centre, and conservative treatment. Patients’ family members and caregivers also should be educated about treatment choices for kidney failure.28

2.4.7 SOCIAL IMPLICATION

There were one SR, one SR with meta-analysis, one retrospective cohort study and two cross-sectional studies retrieved on social implications of PDEP with regards to modality choice. Two qualitative studies found which assessed patients’ satisfaction as well as patients’ and staff insights on PDEP. One SR and one pre- and post- intervention study retrieved examining patients’ knowledge related to PDEP.

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2.4.7.1 Modality choice

Shukla AM et al. (2017) conducted a retrospective cohort study in the USA to report the findings of the initial 22 months of a newly formed comprehensive pre-dialysis education programme (PDEP) clinic for advanced CKD patients and its impact on the rates of home dialysis. The study involved 108 advanced CKD patients with stage 4 and 5 CKD, with occasional patients of stage 3b CKD with rapid renal progression under the care of nephrologists were offered and encouraged transition to the care of PDEP clinic for their routine nephrology care. The PDEP clinic included a renal physician, an advanced nurse practitioner educator, a renal dietitian, and a renal social officer. A pharmacist was added in the PDEP clinic for the latter half of the study period. The PDEP clinic new protocol required patients to attend half-day comprehensive education session. Patients were encouraged to attend with family members, spouse, or caregivers. On arrival, patients were provided with printed material for kidney disease followed by group lesson in classroom format by renal advanced nurse practitioner educator which lasted for a minimum of one hour. After group lesson, patients rotated with renal dietician, social officer, trained dialysis nurse well versed in all dialysis techniques, and renal physician for patient-specific discussions and detailed on the individual needs and questions. Sessions with dialysis nurse included a ‘hands-on’ demonstration of home PD, home HD, and in-centre machine as per the needs and requests from patients. Following that, detailed session with the renal physician which started with an interview of the individual’s family, social, medical, and occupational needs. All previously provided information was reviewed and specific questions addressed. Patients and their caregivers were encouraged to make ‘active choice’ for their RRT. Any remaining misconceptions or fears were addressed during this final discussion and final modality choice was recorded in a passive manner. In contrast, patients who were in established patient protocol group had greater freedom to focus on the areas of their choice for counselling and were routinely seen by the renal physician for nephrology care. Patient preferences for RRT were noted at each clinic visit.19 Level II-2

The study found that over 22 months of PDEP clinic commenced, 70% of patients in PDEP group chose home dialysis, of which, 55% chose PD and 15% chose home HD. Similar rates of home dialysis choice were noted across spectrum of socio-economic variables. Multivariate analysis showed that the choice of RRT modality was unaffected by the patients’ age, gender, race, availability and type of insurance, diabetes status, albumin, or the stage of renal disease. The commencement of PDEP clinic has resulted in a 216% growth in home dialysis census over the same period and resulted in near doubling of home dialysis prevalence to 38% of all dialysis patients within 22 months of initiation.19 Level II-2

Devoe DJ et al. (2016) reported in their systematic review and meta-analysis that six studies reported primary outcome of choosing PD, and five provided sufficient data for meta-analysis. In the RCT (N = 70), educational intervention group was associated with more than 4-fold increase in the odds of choosing PD (OR, 4.60; 95% CI, 1.19,17.74). Meta-analysis results from four observational studies (N = 7,653) showed that patient-targeted educational interventions were associated with a 2-fold increase in the odds of choosing PD (pooled OR, 2.15; 95% CI, 1.07,4.32; I2 = 76.7%). For secondary outcome of receiving PD, 10 studies reported secondary outcome, nine had sufficient data for meta-analysis. Meta-analysis results from nine observational studies (N = 8,229) showed that patient-targeted educational intervention was associated with a three-fold increase in the odds of receiving PD as the initial treatment modality (OR, 3.50; 95% CI, 2.82, 4.35; I2 = 24.9%). The authors concluded that this review demonstrated a strong association between patient-targeted education interventions and the subsequent choice and receipt of PD. The variability in the design of the educational strategies identified and the strength of association across studies highlight the uncertainty about when and how educational interventions should be delivered, as well as likelihood of impact according to baseline PD penetration.22 Level I

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de Maar JS et al. (2016) conducted a cross-sectional study in Amsterdam, The Netherlands to assess the impact of implementation of a structured PDEP named GUIDE with a home-focused approach on the number of pre-dialysis patients that choose home dialysis, and the number of patients that eventually receive home dialysis. Records of all 102 patients that received a treatment recommendation in the GUIDE programme between September 2013 and December 2014 at Meander Medical Centre were retrospectively reviewed. The structured PDEP process starts when a patient has an eGFR of 15 mL/min/1.73 m2. The programme began with home visit from a case manager (social worker) during which first education is given and suitability for home dialysis was assessed. Following that, set of questionnaires were completed by patient, case manager and nephrologist. Patient questionnaire had questions about the patient’s social support system, daily activities, level of independence in activities of daily living (ADL), aspects of life that patient values most and preferences and expectations with regards to RRT. Meanwhile, medical questionnaire comprised the categories transplantation, PD and HD, which contained questions about relative and absolute contraindications for each therapy and nephrologist’s treatment preference. Case manager’s questionnaire covered the suitability of the home, the social environment and the balance between burden and capacity and ended with case manager’s judgment of whether or not home dialysis would be suitable. Subsequently, a multidisciplinary meeting (MDM) was held to determine a specific patient profile and treatment recommendation. In MDM, the most suitable treatment for particular patient was chosen. This was then followed by patient education, a second MDM and finally the selection of the treatment by the patient and the nephrologist. After MDM, specialised pre-dialysis nurse provides education tailored to patient’s profile. General information related to RRT was given to all patients. Training for patient and family members before the start of home dialysis was discussed. Education was provided in a single session, which was repeated upon request. Written brochures and educational videos were also provided. Meetings with other patients were also offered and arranged if requested by the patient or their family. Patient’s response to this educational session was discussed in a second MDM. Following this, patient and nephrologist choose a treatment modality during the next visit to the outpatient clinic.20 Level II-3

The results showed that home dialysis was recommended for 62.8% of the patients who were advised to have dialysis treatment. Of patients that opted for dialysis, 34.2% chose PD and 8.2% chose home HD. About 22.9% started home dialysis as their first therapy, compared with 17.6% in the months before implementation of the programme. The study reported that 32.1% of the patients that received dialysis therapy received home dialysis. In the months before PDEP, an average of just 19.5% of patients that received dialysis received home dialysis. The authors concluded that compared with historical data, the standardised and home-focused PDEP, with its home visit, seems to successfully increase the number of patients that choose and receive home dialysis.20 Level II-3

Van den Bosch J et al. (2015) reported in their systematic review that six out of nine studies reporting on dialysis modality selection showed a higher proportion of patients selecting home dialysis (PD or another home modality) (Table 4) while three studies found no significant difference in modality choice.11 Level I

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Table 4: Studies which reported on preference for home dialysis

Study Results

Chanouzas et al. (2012)20% chose PD

50% choosing PD received PDEP vs 33% of HD patients.

Klang et al. (1998) Higher number of patients chose PD

Levin et al. (1997) 53% of PDEP group chose PD vs. 42% in control

Manns et al. (2005) 82.1% of PDEP group chose self-care dialysis vs 50% in control

McLaughlin et al. (2008) PDEP group more likely to choose self-care dialysis

Ribitsch et al. (2013) 54.3% in PDEP group started with PD vs 28% in control

Four pre- and post- intervention studies on PDEP showed higher levels of home dialysis use after the pre-dialysis education intervention.11 Level I

Cankaya E et al. (2013) conducted a cross-sectional study in Turkey aimed to investigate the relationship between PDEP for patients and their relatives and pre-emptive renal transplantation. A total of 88 patients who underwent living donor kidney transplantation between May 2004 and August 2012 were divided into two groups; transplantation without PDEP (no-PDEP) (N=27) and transplantation with PDEP (N=61). Pre-dialysis education programme (PDEP) involved specially prepared kit using visuals and written cards given to CKD patients and their relatives with six modules; Module 1 covered general information about kidney disease, Module 2 covered diet, drugs and exercise in CKD, Module 3 covered introduction to treatment of renal failure and general information about RRT, Module 4 on PD, Module 5 on HD and kidney transplantation. Patients with early stage will start with module 1,2,3 while patients with stage 3b and 4, will start with module 1,2,3,4,5,6 and patients with stage 5, modules with RRT chosen by patient will be started. The study found that pre-emptive kidney transplantation rates among PDEP group significantly higher compared with the no-PDEP group (42.6% vs 18.5%, P<0.001). Mothers were the most numerous donors in both groups. In addition, donor transplantation rates from spouse, siblings and other relatives were higher among the PDEP group P<0.001, P=0.001, and P=0.002, respectively. The authors concluded that PDEP increased the number of pre-emptive renal transplantation among ESRD patients, reducing dialysis-related complications and costs. Dissemination of PDEP in nephrology outpatient clinics appears to be favourable for patient health, quality of life and economics.26 Level II-3

Unpublished data from a local audit which was conducted in a cluster hospital in Pahang, Malaysia in 2016 involving 130 patients who were recently started dialysis (crashlanders) and CKD Stage 5, referred from Nephrology clinic for Dialysis Preparatory Clinic (DPC), reported that following the preparatory clinic, almost half of the patients chose PD as their initial preferred option (44.7%) and started PD (48.3%) as their RRT. In a more recent audit in 2018 by the same hospital, it was reported that 68.9% patients chose PD as their preferred option for RRT.29

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2.4.7.2 Patients’ satisfaction

Cassidy B P et al. (2018) conducted a qualitative study in Canada to explore participants’ satisfaction with the education they received, while identifying educational needs, and the influence of the educational process in their dialysis modality decision making. The study included a sample of 12 participants between August and September 2016 with four patients from each dialysis modality (in-centre HD, PD, home PD). Patients’ age ranged from 23 to 77 years old with median age of 62 years old. Highest levels of education attained were high school (33%), college (50%), and postgraduate degree (17%). Pre-dialysis education was provided by multidisciplinary team. Educational supports given included: Kidney Foundation of Canada binder, Living With Kidney Disease, 4th edition, four multimodal small group classes, patient partners, and a list of trusted CKD online resources. The four classes covered self-management, living with CKD, stages of change, videos and demonstrations of each dialysis modality, a patient panel, vascular access, and a tour of the dialysis unit. A 30- to 60-minute semi structured interview using the AIDET (Acknowledge, Introduce, Duration, Explanation, Thank You) protocol was conducted with patients along with any family members present to explore on how patients receive information, its influence on their decisions and how the current educational supports could be improved. Demographic survey on patients were also completed. Keywords, phrases, and descriptions were analysed and categorized into themes. Quotes were extracted to best represent the patient voice and were matched to themes through team consensus.21

The study found that there were three overarching themes which influenced the modality decision-making process; Patient Factors (individualisation, autonomy, and emotions), Educational Factors (tailored education, appropriate time/information, and available resources), and Support Systems (partnership with health care team and family/friends). For patient factors, individual circumstances including transportation, level of activity, living situation, and support systems were the core of many modality decisions (individualisation). In addition, patients had varying levels of independence, ability and willingness to engage, and preferred different quantities of information (autonomy), and without adequate understanding of their current health state, patients experienced fear, denial, regret, anger, and shock (emotions). For educational factors, the study reported that content and format of education delivered to patients influenced decision making, with individual patient factors had impacts on the effectiveness of the educational support. Patients tended to receive information more effectively, with active engagement and motivation to learn when provided in accordance with their preferred learning styles (tailored education). Demographic and generational variance was apparent factors which influenced certain participants wished to receive information. Patients’ requests to improve the current educational support included more face-to-face education from clinicians and patients, videos on dialysis, online educational classes, and written information via pamphlets. It is also reported in the study that providing time and repeated exposure to information enhanced patient-informed decision making (appropriate time/information).21

Different patients needed different appropriate amount of time. Patients felt rushed, barraged with information, and overwhelmed when not given enough time. Patients also reported feeling they did not receive balanced information in terms of both the benefits and drawbacks of each modality and desired a more realistic approach. Educational supports had major impact on patients’ perception for each modality (available resource). However, not all the resources offered were accessed by the patients. Patients benefited from group learning and the shared patient experiences and perceptions. The HD unit tour helped set expectations, ease fears, and increase comfort levels. The written materials and CKD websites appeared to play a larger role in improving patients’ understanding of CKD, the modality options available, and prompting questions to ask the healthcare team. In addition, patients reported consistently referring the healthcare team, family, and friends as an educational resource (support systems).21

34


As for support systems, nephrologists play a significant role in modality education and decision making. When a trusting partnership was established, patients had an enhanced sense of importance, control, and respect. However, the opposite was found when there was not a sense of partnership with healthcare team. Patients were less likely to identify other healthcare team members as crucial to decision making. However, when able, feedback was generally positive. Patients stated the case manager was an important educator, the social worker helped them cope and ease fears, and nurses provided emotional support. Patients also relied on family and friends, and lack of support often influenced the decision for in-centre HD over a home-based therapy. The authors concluded that patient’s health literacy, willingness to accept information, pre-dialysis lifestyle, support systems, and values were the influential factors in modality decision making. Patient education requires the flexibility to individualise the delivery of a standardised CKD curriculum in partnership with a patient-health care team, to fulfill the goal of informed and shared decision making.21

2.4.7.3 Patients’ and staff insights

Combes G et al. (2017) conducted a qualitative study in Canada to provide insights into what staff and patients think needs to improve related to pre-dialysis education. Mixed methods were used to look at quantitative changes in home dialysis uptake rates and qualitative case studies to explore barriers and success factors for home dialysis. Four hospital renal units were selected from seven West Midlands units. Formal pre-dialysis education in all four sites included one or more one-to-one sessions with a specialist nurse, a group information session, including talks from patients on RRT and written materials as well as DVDs which patients took home. In several sites, specialist nurses undertook home visits where they discussed treatment options with patients. Doctors also discussed treatment options with patients during out-patient appointments. Semi-structured interviews were conducted with 96 clinical and managerial staff and 93 dialysis patients starting their current treatment within 12 months. For patients, the topic guide in the interview covered were how patients came to be on dialysis, experiences of pre-dialysis and dialysis pathways and suggestions for improvement. For staff, the topic guide covered were current practice, how well the pre-dialysis and dialysis pathways work and how the team had been working to increase uptake of home dialysis. Patients and staff were prompted with an open-ended question about how treatment decisions were made if they did not spontaneously talk about the pre-dialysis period. The semi-structured qualitative telephone interviews were undertaken with 20 to 25 patients and semi-structured qualitative face-to-face interviews were undertaken 20 to 30 staff per site until saturation was achieved. All interviews were audio recorded and were transcribed by a specialist transcription team. The written and audio-visual pre-dialysis education materials used in each site were also reviewed. Data was analysed using thematic framework analysis.12

They reported that most staff made favourable comments about pre-dialysis education and valued the role of specialist nursing staff in educating and supporting patients’ treatment decisions. Most patients reported finding it was overall helpful. There were three themes identified which related to improving pre-dialysis education; sub-optimal education (restricted range of teaching materials and methods, and bias in the presentation of information and treatment options), different perspectives between patients and staff (importance of informal education, approaches to treatment decision-making), and influence of patient experience (influence from other patients, impact of distress). Patients desired improvements made to the teaching methods and biases eliminated. Patients indicated that restricted range of teaching materials and methods have made them felt that they were unable to use information given because the high volume and complexity of information. Another perspective on teaching materials came from patients who thought that they were not ‘real’ enough, and struggled to apply the information to their own lives. Seeing different treatments being undertaken by real patients were all suggested as ways of improving the education. On the other hand, from staff perspective, written materials were designed so that patients had information to take

35



home and consider over time. However, some patients were unable to take advantage of this positive intention. This suggested that patients would benefit from wider range of teaching methods, including interactive methods. Some patients thought that all treatment options were presented fairly and with equal emphasis, others felt not all options had been presented to them and that they had only found out about viable alternatives once they were on dialysis.

Some of these patients thought that opportunities to talk to patients already on treatment might have helped to give them a more balanced view of what life on dialysis might be like. Staff were also aware of the potential for bias in the presentation of information and treatment options, however, all staff groups thought that the first conversation with doctors about treatment options is crucial in influencing patients’ treatment choice. Staff were less aware than patients of how informal staff-patient conversations can influence patients’ treatment decision-making. Many staff felt ill equipped to talk about all treatment options in a balanced and unbiased way due to lack of training or lacked experience of the full range of treatment options. It was seemed that some patients continued to consider treatment options well after they had started dialysis, and continued gathering information and views about treatment options, some with intention to switch treatment. This highlighted the importance of all staff, irrespective of their role, being able to present all options neutrally and answer basic questions about all types of treatment.12

As for approaches to treatment decision-making, patient decision-making was found to be complex and patients’ abilities to make treatment decisions were adversely affected in the pre-dialysis period by emotional distress. Nearly all staff described a rational fact-based approach to treatment decision-making while most patients talked about a more personalised approach of thinking about their own lives and how different treatment options might work for them. With regards to the influence of other patients on decision-making, some patients valued having opportunities to talk to other patients, particularly those who were already on dialysis, because they were able to portray what treatment is really like and some patients thought this helped to balance any biases from staff. Some staff also recognised that pre-dialysis patients can find it beneficial to converse with patients on RRT however, other staff were more cautious and actively discouraged patient contact, because some patients may have atypical experiences or be biased against certain treatments. The impact of distress on decision-making emerged as a strong theme across all patient groups and sites. Patients described at length, the traumatic and frightening nature of the transition to end-stage renal failure. It seemed likely that distress was a major factor contributed to the difficulties of making treatment decision including for patients who had known for years they would need RRT and who might therefore be expected to be well prepared for treatment decision-making. However, very few staff appeared to appreciate the potential adverse impact of psychological distress on patients’ ability to make treatment decisions.12

2.4.7.4 Patients’ knowledge

One SR and one pre- and post- intervention study were found reporting on patients’ knowledge.

Van den Bosch J et al. (2015) reported in their SR that four of 19 quasi-experimental studies found higher levels of knowledge of end-stage renal disease and of different treatment options for patients receiving pre-dialysis education compared to those who did not receive.11 Level I

Danguillan R A et al. (2013) conducted a pre- and post- intervention study in Philippines to review the efficacy of PDEP and counselling programme in improving CKD knowledge. The study involved 299 CKD patients not yet on RRT from June 2009 to February 2010 and consisted of; 60% CKD Stage 5, 19% Stage 4, 10% Stage 3, 1% Stage 2 and 2% Stage 1. An evaluation tool was administered before and after the education modules to determine its efficacy in improving CKD knowledge. Pre-dialysis education programme (PDEP) involved a team comprised of trained CKD educators, a nurse and a psychologist, who conducted

36


structured educational modules according to CKD stage. After each module, patients were instructed to return after every out-patient follow-up for completion of the education modules and further counselling. Patients were given take-home materials after each visit and were instructed about the recommended completion times for the modules: within three to four months for CKD stages 1 to 3, within one to two months for CKD stage 4 and within one month for CKD stage 5. Evaluation tools consisted of four self-administered questionnaires; a 30-item tool (22 items on general CKD knowledge and eight items on RRT), three 10-item tools covering lessons learned from each of the three CKD Clinic visits, an eight-item tool on patients’ health-care seeking behaviour prior to consultation at hospital, and a four-item questionnaire on perceived CKD knowledge. The 30-item tool evaluated patients’ baseline or actual knowledge (overall pre-test) and again after the patient completed all the education modules (overall post-test). The 10-item tools were administered after each visit to reinforce the lessons learned. Patients were followed-up for six months and overall pre- and post-test scores were compared to determine if there was improvement in the patient’s CKD knowledge.24

The study found that only 28% patients completed the modules within six-month follow-up period. Most patients who did not complete the programme (83%), no longer presented for follow-up after three months due to various reasons; poor compliance due to financial, came only for diagnosis, too ill to return for follow-up, lack of understanding, and low priority given. For perceived CKD knowledge, majority (34%) had no knowledge about CKD, 30% had little, 28% some, and 8% claimed a great deal of knowledge. Most were unaware of RRT options; 70%, 64.2%, and 54.2% had no knowledge of PD, HD, and transplantation, respectively. No significant association between CKD stage and knowledge of RRT. About 90% scored < 60% on general knowledge of CKD and 90% scored < 50% on the actual knowledge of ESRD treatment options. Among patients who claimed that they had extensive CKD knowledge, all scored < 60% in the actual knowledge questionnaire. For efficacy of education modules, there was significant increase in mean overall pre-test scores of CKD knowledge from 7.0 ± 5.11 (maximum score 30) to 23.0 ± 4.5 (maximum score 30) points in the overall post-test, with 69% scoring ≥75% (P<0.00001). There was an increase in number of patients (58%) who gained knowledge on the different aspects of CKD after completing the educational modules except for the topic on signs and symptoms of CKD. Patients aged < 50 years had significantly higher pre- and post- test results compared to older age groups (P=0.007). The authors concluded that the CKD education and counselling programmes were effective in improving patients’ knowledge of their disease. Elderly and non-high-school graduates of a financially disadvantaged population may need specially designed education modules to improve their comprehension.24

2.4.7.5 Psychological Implication

García-Llana H et al. (2014) conducted pre- and post- intervention study to determine the effectiveness of an individual, pre-dialysis intervention programme in terms of adherence, emotional state and health related quality of life (HRQL) in pre-dialysis patients with advanced CKD. All 52 adult patients with advanced CKD under pre-dialysis treatment with eGFR of ≤ 20ml/min or less were included in the study. The programme involved a six-month individual programme with every patient entering the study attended their regular appointments with nephrologist, the nurse and nutritionist and each patient received six individual monthly face-to-face sessions about 90-minutes duration each time with health psychologist. Every session had two distinct aims; first 45 minutes of sessions provided training in skills that facilitated the patient’s adaptation to the advanced CKD and its treatments, and last 45 minutes helped improve adherence to medication through motivational interviewing. Assessments were administered prior to the intervention and after the intervention. Patients were followed-up for six months and evaluated for adherence, depression, anxiety and HRQL with standardised self-report questionnaires. Biochemical markers were also registered.25 Level II-3

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The study found that after the intervention, patients reported significantly higher levels of adherence [Mean score (SD) range; pre-test 27.12 (2.74), 22–33 vs. post-test 31.45 (2.05), 26–33 (P<0.001)], lower depression levels [(M = 10.92) pre- vs. post- (M = 8.86) intervention] and anxiety levels [(M = 18.22) pre- vs. post- (M = 14.41)]. Health-related quality of life (HRQL) scores on the General Health subscale increased significantly (from M = 37.19 to M = 45.97), as did scores on the Emotional Role subscale (from M = 71.82 to M = 77.57). No effects were found in other domains of HRQL (physical function, physical role, bodily pain, vitality, social function, mental health). Biochemical parameters were found significantly better controlled after the intervention, except for iPTH. The authors concluded that the findings highlighted the potential benefit of applying individual psycho-educational intervention programmes based on motivational interviewing and using the stages of change model to promote adherence and wellbeing in advanced CKD patients.25 Level II-3

2.4.8 COST / COST - EFFECTIVENESS

Yu YJ et al. (2014) conducted RCT with cost-analysis in Taiwan to analyse the medical expenditure and utilisation incurred during the first six months of dialysis initiation in 445 incident HD patients who were randomised into PDEP and no-PDEP groups before reaching ESRD. Medical expenditure and utilisation in the first six months of initiation of haemodialysis in these patients were accurately recorded and compared between PDEP and no-PDEP patients. Medical service utilisation was calculated as the frequency of outpatient visits and the frequency and length of hospitalisation. Medical service expenditures included outpatient expenditures (all costs including physicians’ and nursing fees, examinations, surgery, and medication) and inpatient expenditures (all costs including laboratory testing, imaging testing, medications, surgery and consulting, ward and administrative, nasogastric tube feeding, and haemodialysis fees). The expenditures for each participant were totalled to compute the sum of ambulatory and inpatient medical service utilization costs and expenditures. Analysis of costs only included those medical costs for which our hospitals made reimbursement claims to the NHI. The salaries, overheads, and administrative costs of the care team were not included in the analysis. The results showed that PDEP patients had lower total medical cost in the first six months after HD initiation (9147.6 ± 0.1 USD/patient vs. 11190.6 ± 0.1 USD/patient, p=0.003) compared to the no-PDEP patients. Medical cost of inpatient service was significantly lower in MPE patients (mean 2261.8 ± 5635.8 USD/patient in PDEP patients vs. mean 3698.8 ± 5540.9 USD/patient in no-PDEP patients, p<0.001), principally due to reduced cardiovascular hospitalisation and vascular access-related surgeries. The decreased inpatient and total medical cost associated with PDEP were independent of patients’ demographic characteristics, concomitant disease, baseline biochemistry and use of double-lumen catheter at initiation of haemodialysis. The authors concluded that participation of multidisciplinary education in pre-dialysis period was independently associated with reduction in the inpatient and total medical expenditures of the first six months after dialysis owing to decreased inpatient service utilisation secondary to cardiovascular causes and vascular access–related surgeries.16 Level II-2

Wei SY et al. (2010) conducted a retrospective cohort study with cost-analysis in Taiwan involving 140 incident ESRD patients who started dialysis and divided into two groups; PDEP group who received care and education from multidisciplinary team and Nephrologist Care Group (no-PDEP) who received standard care from nephrologist only. Medical services utilisation and costs were analysed from six months before initiation of dialysis to the time of the first HD, and the time periods were divided into ‘six months before dialysis’, ‘at dialysis initiation’, and the sum of the two periods as the ‘total period of observation’. Outcome measures for service utilisation included average outpatient visits before dialysis, frequency of hospitalisation before dialysis, percentage of patient hospitalisation at dialysis initiation, and average length of stay. Measurement of costs only included direct medical costs for which the study hospitals made claims for reimbursement. Salaries, overheads and indirect costs of the care team were not included in the analysis. The results showed

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that PDEP group had higher costs during the six months before dialysis (US$1428 +/- 2049 vs US$675 +/- 962/patient, P < 0.001), but was significantly associated with lower medical costs at dialysis initiation (US$942 +/- 1941 vs US$2410 +/- 2481/patient, P < 0.001) and for the total period of observation (US$2674 +/- 2780 vs US$3872 +/- 3270/patient, P = 0.009). The cost-saving effect resulted from the early preparation of vascular access and the lack of hospitalisation at dialysis initiation. The authors concluded that PDEP had successfully helped pre-ESRD patients to proceed into dialysis initiation with better preparedness, which reduced the probability of emergency dialysis through hospitalisation and saves money.17 Level

II-2

2.5 DISCUSSION

Our systematic review included 16 studies comprised of one SR with meta-analysis, one SR, one RCT, three cohort studies, two retrospective cohort studies, two pre- and post- intervention studies, four cross-sectional studies and two qualitative studies on pre-dialysis education programme for advanced CKD patients. There was no HTA report retrieved. The evidence was gathered according to the outcomes for effectiveness, safety, organisational, social implications and cost-effectiveness. The findings showed that with regards to effectiveness, participation of CKD patients in structured PDEP was associated with significantly better survival probability, mortality and morbidity rates. The one-year survival rate for HD patients who received structured PDEP were found to be higher despite of them being older and having more comorbidities. Peritoneal dialysis (PD) patients who had structured PDEP beforehand also found to have significantly lower peritonitis-related mortality rates and lower peritonitis-related morbidity rates compared to those who did not. These findings highlight that structured PDEP contributed to improved outcomes in advanced CKD patients. Meanwhile, PDEP in MOH facilities in Malaysia vary greatly across the country and have yet to be standardised. Future works are seriously needed to further strengthen PDEP in MOH, Malaysia facilities through standardisation to ensure effective outcomes for advanced CKD patients.

We did not find any retrievable evidence on the safety issues related to the programme. Frequency of temporary catheter use, rates of hospitalisation at dialysis initiation and post- dialysis, as well as length of hospital stay were also found to be significantly lowered in CKD patients who had PDEP. Significantly more patients who participated in the programme had their vascular access created before the initiation of HD. Cost-analyses included in this review, highlighted that medical expenditure after HD initiation significantly reduced in patients who had PDEP and achieved cost-savings principally due to reduced cardiovascular hospitalisation and vascular access–related surgeries.

In terms of modality choice, our findings demonstrated substantial association between PDEP and the subsequent choice and receipt of PD. An increase in rates of home dialysis and pre-emptive kidney transplantation rates were likewise noted. Similarly, the results from the local audits in Malaysia on advanced CKD patients who attended PDEP clinics also showed a higher preference for PD as their option for RRT and these findings are in line with findings from this SR. Higher PD uptake has been shown to have significant impacts on ESRD patients notably in superior social and patient experience compared to HD. In particular, patients treated with PD reported better quality of life,30-34 greater independence34, more flexible lifestyle34 and improved job opportunities.34 Better cognitive functions and lower dementia risk have also been reported in patients treated with PD.35 In addition, most studies suggest that PD is less costly with comparable or better health outcomes than HD.36

In terms of patient’s knowledge and psychological implications, higher levels of ESRD knowledge and of different treatment options, as well as higher levels of adherence, lower depression and anxiety levels, and better HRQL were reported for patients in PDEP. Two qualitative studies in this review explored patients’ satisfaction and insights towards the programme and reported that modality selection is a complex process requiring an

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individualised approach for each patient. Patients’ decisions on RRT were influenced by their own preferences and values, the education delivered to them, and the support systems available to them. Emotional distress was a strong theme described by patients in the transition to end-stage renal failure which then affected their abilities to make treatment decisions. However, the impact of psychological distress on patients was found mostly underappreciated by the healthcare staff.

In general, our results indicated that PDEP had favourable outcomes on advanced CKD patients. However, there was wide variation between the components of programmes outlined in all the included studies in this review. These findings are in line with previous systematic reviews done by Devoe DJ et al. (2016) and Van den Bosch J et al. (2015) which highlighted such a great variation between different components of the programmes.11 Level I, 22 Level I Both SRs reported that the nature of educational interventions varied greatly between studies.11 Level

I, 22 Level I Our review detailed similar findings that most studies described varying educational components and processes. Multidisciplinary team members were almost always comprised of nephrologist, nurses, dietitians, and medical social workers with few programmes had clinical psychologist, pharmacist, and patient volunteers. Delivery style ranged from multiple individual sessions with multidisciplinary team members to mixed of individual sessions and group sessions as well as patients’ involvement particularly in peer sharing sessions. Variety of formats for content, structure, frequency of sessions, follow-up and duration of sessions have been described. Materials used came in a wide variety of forms and sources included printed materials, video and website materials. Timing for PDEP were mentioned at stage 4 and 5 CKD or few months before dialysis commencement. Training for the staff administering the programme was not specified in most included studies.

These findings emphasised on the lack of standardisation in the conduct of PDEP which

could hinder advanced CKD patients from getting optimal quality educational interventions to ensure effective outcomes for RRT and the subsequent improvement in quality of life. A more standardised approach to PDEP is needed to further establish its effectiveness for advanced CKD patients. Since most of the studies included in our review had follow-up duration of between three months to two years with exception of one study on PD patients that had follow-up duration of five years, more studies with longer follow-up period are needed in the future to demonstrate the long-term effects of PDEP for advanced CKD patients.

Limitations

This systematic review has several limitations and these should be considered when interpreting the results. Although there was no restriction in language during the search, only the full text articles in English published in peer-reviewed journals were included in the review, which may have excluded some relevant articles and further limited the study numbers. Firstly, one of the important limitations was the methodological quality of the included reviews and the limitations of the primary studies themselves. The SRs in this review have included mostly quasi-experimental studies and often without control groups or pre- and post- intervention measures. Some studies presented data in comparison to other reports or to previous findings instead of in comparison to control groups. We did not conduct a rigorous assessment of the concordance of the data reported in the SR with those stated in the primary studies. It is presumed that each review generally included the full available and eligible evidence that data extraction was accurate, and that analyses were scientifically sound. Secondly, the huge variation between the PDEP conducted in the included studies would be an important aspect that should be considered when interpreting the results. Most of the included studies in this review were conducted in Taiwan, USA and other parts of Europe which could potentially raise some questions on the applicability of the results to Malaysian population.

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CHAPTER 3: PATIENT AND PUBLIC INVOLVEMENT IN

PRE-DIALYSIS EDUCATION PROGRAMOver the years, Malaysian Health Technology Assessment Section (MaHTAS) has continuously ensured patient involvement in the development of HTA and CPG. Patients or their representatives are often involved as committee members for HTA and CPG. This is the first patient and public involvement (PPI) initiative by the authors to obtain perspectives from patients, carers and HCWs via a questionnaire survey as part of the HTA on PDEP. The short form of Guidance for Reporting Involvement of Patients and the Public (GRIPP2-SF) checklist is used for the reporting of this survey which includes five sections: aim, methods, study results, discussion and conclusion, and reflection/critical perspective.37

3.1 AIM

Pre-dialysis education has been offered to CKD patients in several major and minor specialist centres in Malaysia. However, a structured and user-centric PDEP is yet to be established in public health facilities. As each treatment option has its own advantages and disadvantages, sufficient information should be provided for better informed decision-making by the patients and carers. The aim of this survey is to identify the essential components of PDEP based on the preferences of patients, carers and HCWs to inform the development of a structured PDEP in Malaysia.

3.2 METHODS

The survey instrument was developed in English language based on findings from previous studies37-40, informal interview with a 30-year-old Malaysian female CKD patient with 12 months’ dialysis experience, and questions of feasibility and acceptability that the survey was designed to answer. The survey items were revised via professional judgement on relevance to pre-dialysis education in Malaysian public health facilities and appropriateness in terms of simplicity, ambiguity, validity, and sentence structure.

The survey consisted of 20 partial close-ended questions divided in three sections (Appendix 6): (i) socio-demographics (age, sex and level of education); (ii) background/treatment experience (type of respondents, place of treatment/workplace, and experience of dialysis and pre-dialysis education); and (iii) preferences of PDEP (preferred patient educators, types of information needed, delivery method, education materials, time of initiation, duration, frequency, preferred venue, and importance of patient support group and shared decision-making). Respondents were allowed to choose more than one answer for some of the questions.

The multicentre cross-sectional survey was conducted in January 2020 by a team of four researchers at the nephrology clinic or dialysis centre of three selected public hospitals under the Ministry of Health Malaysia (MOH):1) Hospital Kuala Lumpur (HKL)2) Hospital Tengku Ampuan Rahimah Klang (HTAR)3) Hospital Ampang

Inclusion criteria were age ≥18 years old, Malaysian citizens and CKD patients, carers of CKD patients or HCWs involved in the care of CKD patients. Those who were experiencing medical conditions deemed unfit to participate were excluded from the survey. Target sample size was a minimum 30 respondents (10 participants from each study site). Respondents were recruited via purposive sampling by nephrologists or HCWs in charge of the nephrology

41



clinic at selected public hospitals. The survey was answered by respondents themselves (self-administered) or administered by researchers if respondents were unable to read the English language. Informed consent was obtained prior to administration of the survey. An additional short interview session was carried out following the survey for participating HCWs to obtain in-depth information on the existing pre-dialysis education being offered to CKD patients at selected public hospitals. Data tabulation and descriptive analysis were performed using Microsoft Excel® version 2016 (Microsoft Corporation, Redmond, WA, USA) software.

3.3 RESULTSA total of 39 respondents consisting of patients, carers and HCWs were recruited from selected public hospitals. About two-third of the respondents were younger than 50 years of age (64.1%) (Table 5). Approximately half of the respondents were female (53.8%) and had completed education up to secondary school (56.4%). Time to complete the survey ranged from 10 to 30 minutes.

Majority of respondents were CKD patients (69.2%) and from HKL (43.6%) (Table 6). Most of the patients and carers of CKD patients (N=31) had received pre-dialysis education prior to initiation of dialysis (67.7%); about 18 of them (58.1%) had been initiated on dialysis with duration of dialysis ranging from less than six months to more than 18 months.

Table 5: Socio-demographics of respondents.

Characteristics (N=39) Frequency, n (%)

Age18-3031-4041-5051-6061-70

4 (10.3)8 (20.5)13 (33.3)9 (23.1)5 (12.8)

GenderMaleFemale

18 (46.2)21 (53.8)

Level of educationPrimarySecondaryTertiary

3 (7.7)22 (56.4)14 (35.9)

Table 6: Respondents’ background/treatment experience.

Background/treatment information Frequency, n (%)

Type of respondent (N=39) Patient Carer HCW

27 (69.2)4 (10.3)8 (20.5)

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Hospital/workplace (N=39)HKLHTARHospital Ampang

17 (43.6)12 (30.8)10 (25.6)

Received pre-dialysis education (patients/carers, N=31)Yes No

21 (67.7)10 (32.3)

Initiation of dialysis (patients/carers, N=31)YesNo

18 (58.1)13 (41.9)

Duration of dialysis for those on dialysis (N=18)<6 months6-12 months12-18 months >18 months

4 (22.2)0

2 (11.1)12 (66.7)

In terms of preferred educators, the preference of patients and carers (N=31) in decreasing order was doctor (94%), dietitian (90%), patient representative (84%), medical social officer (81%), psychologist (74%), pharmacist (74%), nurse (68%) and medical assistant (52%) as shown in Figure 5.

Figure 5: Preferred patient educators.

For the type of information needed prior to initiation of dialysis as illustrated in Figure 6, majority of patients/carers (N=31) agreed that it is important to be given the information on dietary advice (100%), advantages and disadvantages of treatment options (97%), medications and supplements associated with each treatment (97%), side effects of dialysis (97%), how dialysis was performed (97%), costs associated with treatment options (87%) and the effects of dialysis to daily lives (87%). However, information on how to dress for dialysis was less required by the patients/carers (39%).

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As for the delivery method, patients and carers (N=31) had a slightly higher preference for individual (one-to-one) sessions (39%), followed by group sessions of 2-5 people (29%) and group sessions of 5-10 people (29%); one respondent voted for group sessions of 15-20 people. The majority of HCWs (N=8) also showed preference for individual (one-to-one) sessions (63%) instead of group sessions of 2-5 people (25%) and group sessions of 5-10 people (12%). A slightly higher proportion of patients and carers (N=31) preferred one single session with multiple educators (32%) compared to multiple sessions by appointment (26%), multiple sessions upon request only (26%) and one single session with a single educator (16%). Meanwhile, half of the HCWs (N=8) voted for multiple education sessions by appointment (50%), followed by one single session with multiple educators (25%) and one single session with a single educator (25%).

Figure 6: Types of information needed by patients/carers prior to initiation of dialysis.

Figure 7: Education materials.

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.In terms of education materials, preference of patients and carers (N=31) in decreasing order was hand-on session/demonstration (74%), audio-visual aids (71%), leaflet/pamphlet (64%) and information about websites or online videos (61%), suggesting that a mix of different education materials may be suitable for PDEP.

With regards to the time of initiation, patients and carers (N=31) had the highest preference for pre-dialysis education to be given six months before initiation of dialysis (39%). However, half of HCWs (N=8) voted for pre-dialysis education to be given one month before initiation of dialysis (50%).

For the duration of each session, patients and carers (N=31) preferred a shorter session of 15-30 minutes per session (52%) followed by 30-45 minutes (32%), 45-60 minutes (10%) and >60 minutes (6%). Majority of HCWs (N=8) voted for a longer session of 30-45 minutes for each session (63%).

In terms of frequency, patients and carers (N=31) had the highest preference for pre-dialysis education to be held once every three months (36%), followed by once every two months (29%), once every month (26%) and once a year (7%); one respondent preferred for on an as-needed basis. Similarly, HCWs showed the highest preference for once every three months (50%), followed by once every six months (37%) and once every month (13%).

Majority of patients and carers (N=31) voted for hospitals (65%) as the preferred venue for PDEP, followed by dialysis centres (39%). However, 75% of HCW voted for community clinics. Some of the HCWs commented that PDEP should be expanded to primary care or community level; however, issues on commitment, sustainability and continuity of the programme need to be considered.

Almost all patients and carers (N=31) agreed that being part of a patient support group would be helpful to discuss solving problems faced in real life (96.8%) and that doctor-patient shared decision-making on initiation of dialysis is important (96.8%).

Some of the respondents provided suggestions to improve PDEP (Appendix 7) which were grouped into four themes: individualised, support system, training and comprehensiveness (Table 7).

Based on the information provided by the participating HCWs, the three selected public hospitals had provided pre-dialysis education to their patients with some differences in programme content, structure and component (Table 8). All three programmes involved a multidisciplinary team of HCWs such as doctors, nurses, pharmacists and dietitians.

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Table 7: Summary of suggestions to improve PDEPNo. Themes

Individualised Support system Training Comprehensiveness

1. Programme must be well-organised as scheduled and should accommodate the patient’s personal schedule.

Family members/ partners/ friends should be included throughout the patient’s CKD journey.

Educators must be well-qualified, knowledgeable, and experienced to be able to advise and answer patients’ questions correctly.

Contents of the module should be comprehensive and hands-on demonstration should be included.

2. Educators must provide more human touch and be sensitive towards patients’ needs and emotions as they may be very fragile during the pre-dialysis stage.

Consistent attendance from the same family member/ partner/ friend should be encouraged.

Educators must be well-trained in providing adequate emotional support to patients.

Patients and carers should be educated on CKD and its progression, signs and symptoms of ESRD and preventive measures to delay ESRD.

3. Weekend sessions are preferred to minimise interference with daily work.

Carers should be well-educated about CKD, end-stage renal disease (ESRD) and dialysis to provide sufficient support and help patients make informed decisions.

HCWs should know how to communicate effectively with patients to ensure accuracy of information before starting each dialysis such as body weight, dry weight and dietary intake.

Counselling by a psychologist can be given by appointment for patients who need it.

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Table 8: Comparison of existing PDEPs in three public hospitals.HKL HTAR Hospital Ampang

Time Monday afternoon (2.30pm – 5.30pm)

Wednesday morning (10.00am)

Monday/ Wednesday

Frequency Twice a month (Week 1 & 3)

Once a week Twice a week

Venue Seminar room HKL Nephrology Clinic (lobby) Haemodialysis unit (HDU)/ CAPD unit

Session Approximately 30 minutes for each speaker

•One hour (10.00am – 11.00am)

•Counselling by doctor during clinic visit

•Morning session by referral from clinic

•Counselling by doctor during clinic visit

Speaker •Doctor, medical social officer, dietitian, CAPD & HDU representatives

•No pharmacist/ psychologist involvement during education session

•Doctor/ medical assistant/ sister/ staff nurse on rotation basis

•MTAC pharmacist reviews patient in clinic separately

•Doctor/ medical assistant •Referral-based dietitian

services•Pharmacist stationed at

nephrology clinic

Participant •Patient and family/ relatives (compulsory attendance)

•Between 10-30 participants/ session

• Large group of patients attending pre-dialysis clinic

• 1-5 patients/ session

Content •Physiology of the disease•How to take care of

CKD patient (e.g. blood pressure measurement for patient with fistula/ self-hygiene)

•More detailed explanation will be given by CAPD/HDU once the patient decides on the type of treatment

•Dietary requirement• Financial aid (SOCSO/

Lembaga Zakat)

•Dietary requirement by medical assistant/ sister/ staff nurse

•Disease and treatment by doctor (approximately 45 minutes)


• First CAPD training 4 times a day, subsequent training via home visit

•Disease and treatment by doctor (approximately 45 minutes)


•Dietary requirement by medical assistant/

• First CAPD training 4 times a day

• Financial aid information/ documentation by HDU staff; application process is facilitated by medical social officers

Education materials

•Video/ slide presentation/ leaflet: dietary restriction, (occasionally general leaflet on CKD)

•No hands-on demonstration; details will be covered by respective units

•Existing patient support group program by CAPD/ HDU

•Slide presentation•Educational Talk

•Booklet•Video show•Educational talk•Education corner (dietary

intake)•Practical session in HDU/

CAPD Unit

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3.4 DISCUSSION

The PPI initiative has revealed essential preferences of patients, carers and HCWs for pre-dialysis education which are valuable information for the development of a national, structured and patient-centred PDEP in Malaysia. Engagement of patients and stakeholders not only increases its relevance to users by answering questions of importance to patients and carers, but also empowers them to play a more active role; supports democracy and accountability; improves acceptability of research findings; and accelerates adoption into practice.41 A number of suggestions for improvement has also emerged, highlighting the importance of an individualised approach, strong support system, adequate staff training, and comprehensiveness of the programme. Our findings resonate with results from previous qualitative study where a much more individualised approach is required, taking into account the wide variation of patients’ motivation and interest in making treatment choices, which would demand a higher level of skill and training for staff involved in PDEP.38

Emotional distress in CKD may impede patients’ and carers’ understanding of information. In addition to effective communication skills, HCWs need to be well-informed about all treatment options as well as complexities and difficulties patients and carers face when considering treatment options so that they are able to provide adequate assistance and emotional support. Combes et al. (2017) observed that staff and patients may not conceptualise pre-dialysis education in the same way; patients appeared to place additional value on more informal education, arising from conversations with staff and other patients whilst staff tended to focus on formal pre-dialysis education sessions and discussions during outpatient appointments.38 Hence, HCWs need to be aware of how informal staff-patient conversations can influence patients’ treatment decision-making and be sufficiently trained in providing informal education in an unbiased way.

It is noteworthy that in this survey, patients and carers expressed different preferences in terms of delivery method, time of initiation, duration, frequency and venue compared with HCWs’ preferences. Such differences may arise from varying past experiences of patients and carers. Individual sessions may provide more comfort to those who are emotionally overwhelmed and assistance to those with low health literacy who find it difficult to process and apply health information to their own lives. Some may prefer group sessions which encourage interaction among participants, improving education efficiency, knowledge perception and self-management behaviours.42 Therefore, method of delivery in terms of individual or group sessions should consider patients’ needs and suitability prior to enrolment in PDEP.

Different preferences may also arise from HCWs’ consideration of practical aspects in implementing the programme. For example, in this survey, HCWs voted for pre-dialysis education to be given one month before initiation of dialysis in contrast to patients’ and carers’ preference of six months before initiation of dialysis. This coincides with findings by Morton et al. (2010) where patients and families conveyed the need for more time to absorb information and to adjust to the approaching treatment regardless of the treatment options they were contemplating; however, nephrologists tend to provide information in increasing detail closer to the initiation of renal replacement therapy which would reduce the time available for patients to make decisions, possibly coinciding with patients being symptomatic or cognitively impaired.39 Therefore, the timing of pre-dialysis education should allow sufficient time for patients and carers to understand about treatment options before making treatment decisions. Nevertheless, HCWs may have different perspectives due to the daily burden of workload and capacity in delivering the education sessions, which should be taken into consideration when designing the PDEP.

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Another important aspect to be considered is that different healthcare facilities may have varying capacities and needs influencing the delivery of PDEP, which was evident from the comparison of existing PDEPs at the three selected public hospitals in this survey. The lack of standardization of education programmes is acknowledged by professionals in the field of pre-dialysis education.40 The delivery of current PDEP in Malaysia is highly dependent on the availability of human resources, staff competencies, appropriateness of facilities, number of patients and content of the programme. Different structure, components and methods of delivery in these facilities suggests the need for standardisation in the design and implementation of PDEP among the MOH hospitals to ensure effective and standardised educational methods.

The strength of this survey was the experiential knowledge obtained from different categories of respondents (patients, carers and HCWs) which provided unique perspectives to promote more useful evidence that is relevant and responsive to patients’ and stakeholders’ needs. There was variation in the duration of dialysis, ranging from less than six months to more than 18 months which gave a broad perception of PDEP based on the patients’ experience with dialysis. The limitation of this survey is that some respondents required researchers’ help in administering the questionnaire where translation of English language to other languages such as Malay and Mandarin was required, during which translated items may not retain the same meaning as original items. The survey is also limited by a small number of respondents due to a short study period which may not fully represent each category (patients, carers and HCWs). The inclusion of all three study sites in Klang Valley implied limited respondent demography and results may not be generalizable to suburban or rural populations due to limited respondent demography. Nevertheless, this survey provided valuable insights of CKD patients’ and carers’ experiences and preferences which helped stakeholders identify the key areas for the development of a national structured patient-centred PDEP.

Based on the survey findings, the preferences of patients and carers for the PDEP could be concluded as below:

1) Educators: A multidisciplinary team consisting of:a) Doctorb) Dietitianc) Patient representatived) Medical Social officere) Psychologistf) Pharmacistg) Nurseh) Medical assistant

2) Delivery style: According to the patient’s preference; single individual (one-to-one) session or group session with multiple educators every three months

3) Education materials: A mix of materials such as:a) Hands-on session/demonstrationb) Audio-visual aidsc) Leaflet/pamphletd) Information about website/online video

4) Time of initiation: Sufficient time to understand about treatment options; approximately six months before initiation of treatment

5) Duration: Approximately 30 minutes for each session6) Preferred venue: Hospital

3.5 REFLECTION / CRITICAL PERSPECTIVES

The comparison of existing PDEPs in three public hospitals showed different interdisciplinary approaches in which the extent of involving healthcare professionals from different disciplines differed among the hospitals. Based on the survey findings, respondents preferred pre-

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dialysis education to be delivered by a multidisciplinary team consisting of doctor, dietitian, patient representative, medical social officer, psychologist, pharmacist, nurse and medical assistant. Respondents expressed that they had different needs throughout their CKD journey which ought to be addressed by healthcare professionals from different disciplines. A retrospective cohort study reported that recipients of a multidisciplinary PDEP, including nephrologists, dialysis nurses, pharmacists, dietitians, and medical social officers experienced reduced unplanned urgent dialysis, hospital stays, cardiovascular events, and infections as well as improved metabolic status on dialysis initiation compared with non-recipients.43 Interdisciplinary care models that emphasise shared responsibility for CKD education among multiple professionals should be promoted as it may improve patient outcomes and create efficiencies in education delivery.42

In this survey, respondents had emphasised on the inclusion of family members or other carers during pre-dialysis education sessions as they too need to be well informed in order to provide the support and advice that patients need. In addition, carers reported feeling unprepared, having insufficient knowledge and receiving inadequate support from healthcare professionals. For patients with CKD, family members and other carers not only provide important support to them, but also have the potential to help overcome socio-cultural barriers and institutional/medical mistrust which is prevalent among hard-to-reach groups who carry the highest burden of CKD. Support from family and other social groups has also been shown to be a key factor in changing diet patterns (e.g. sodium reduction) and increasing physical activity. Therefore, including family and other carers in pre-dialysis education may better equip them to support the patients who they care for and ultimately yield improved patient outcomes.42

Majority of respondents agreed that being a part of a patient support group would be helpful for CKD patients. Some respondents expressed that they were more comfortable to hear from those with experiential knowledge and were more open to discuss their concerns with them. Indirect involvement of motivated dialysis patients in the PDEP can offer support to other patients through experience-sharing. In a research by Salter et al. (2015), participants acknowledged that other fellow dialysis patients provided emotional support beyond what they were receiving from their friends and family. Many participants described how dialysis patients encouraged one another to keep a positive attitude and formed close bonds, which they considered as social support from their “dialysis family”.44 Having the opportunity to talk to those already on renal replacement therapy could help patients envisage what life on dialysis is really like.38 Hence, sharing sessions by experienced dialysis patients, either by volunteering or through incentive methods, may be incorporated in the PDEP for a more comprehensive programme. However, this may need to be implemented with care as patients’ stories may have more influence than clinical advice on other patients’ treatment choice.38,39

The respondents also agreed that shared decision-making between doctors and patients is important. Shared decision-making, a collaborative process that allows patients and their providers to make healthcare decisions together, taking into account the best scientific evidence available, as well as the patient’s values and preferences, is recognized as a central component of patient-centred care and self-management support.35 Decision-making in ESRD is complex and dynamic, evolving over time and toward death. Patients, families and healthcare professionals should make joint decisions about starting or stopping dialysis treatment to ensure that decisions are informed and consistent with the patient’s preferences. However, factors that affect patients and healthcare professionals in making such decisions must be understood. A systematic review found that for the initiation of dialysis, patients based their choice on “gut instinct”, as well as weighing over the effect of treatment on quality of life and survival. Healthcare professionals, on the other hand, focused on biomedical factors and were led by an instinct to prolong life. Both patients and healthcare professionals described feeling powerless from different aspects of disease management.45 Hence, patients’ input in decision-making is valuable for the healthcare professionals to design an acceptable and

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feasible PDEP. By taking into account the differences in values perceived, the feeling of powerlessness for both the patients and healthcare providers can be addressed mutually.

How patients coped with emotions was also an important aspect to be considered. In handling ESRD, two coping mechanisms were highlighted by the patients, which are problem controlling and emotion controlling. The effect of emotions on choice is well described, and it is suggested that an emotional reaction to a stimulus is the most important factor to guide decisions.45 During the survey, some respondents expressed that they were having problems in accepting the fact that they need dialysis and this may not be well-addressed in the current PDEP. As a result, patients faced difficulties in making decisions for dialysis options and hence, kept on delaying in initiating treatments. In the qualitative study by Combes et al. (2017), patients described in detail, the traumatic and frightening nature of the transition to end-stage renal failure; however very few staff appeared to appreciate the potential adverse impact of psychological distress on patients’ ability to make treatment decisions.38 Therefore, the presence of a counsellor or psychologist in the PDEP team to offer counselling sessions regularly or by request would be crucial to specifically address the patient’s emotional needs. Questionnaire survey was the preferred method used to gather information from patients and stakeholders in this PPI initiative given the short timeframe. Moving forward, other complementary methods such as focus group discussion may be conducted to consolidate the survey findings. Qualitative data from focus group discussion may provide new insights on factors influencing patients’ decision-making on treatment choice. In a focus group study by Salter et al. (2015) among patients with ESRD undergoing haemodialysis, participants disclosed their perceptions of being treated poorly by medical professionals, lacking information about renal disease and treatment options, as well as desiring more knowledge about treatment options.37 Focus group discussion may also reveal potential explanations on findings from other quantitative studies, for example, the reasons behind why certain groups of patients were less interested in suggested interventions by the treating doctors. Recommendations for best practice in focus group discussion include clear rationale for the choice of this method, skills and techniques of the moderator or facilitator, methods and results should be reported explicitly, cautious towards biases affecting group discussion, and ensure a clear pathway between the data obtained, coding and subsequent analysis of data.46

During the survey, some patients and HCWs appeared to be facing language barrier in receiving and providing pre-dialysis education, respectively, which was expected as Malaysia is a multicultural and multilingual country. Education materials and sessions may need to be provided in Malay the national language as well as English the second language, both widely spoken in Malaysia. For non-Malay and non-English speaking patients, language barrier may impede their ability to understand with sufficient depth about CKD and treatment options, resulting in their needs being inadequately addressed. In a qualitative study exploring the experience of healthcare decision-making among culturally and linguistically diverse adults receiving in-centre haemodialysis for advanced CKD, patients expressed that while different cultural backgrounds did not influence their communication with healthcare providers, it was much easier understanding their providers and expressing their concerns and questions in language-concordant consultations.47 In the circumstances of language discordance between patient and provider, family member/partner/friend of diverse linguistic background or interpreter may be required to accompany the patient for pre-dialysis education session. The linguistically diverse population in Malaysia further emphasises the importance of an individualised approach in providing pre-dialysis education.

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CHAPTER 4: CONCLUSIONS AND RECOMMENDATIONS

4.1 CONCLUSION4.1.1 SYSTEMATIC REVIEW

EffectivenessThere was limited fair level of retrievable evidence to suggest that participation of advanced CKD patients in PDEP contributed to greater survival probability and higher one-year survival rate compared to those who did not. However, no significant difference reported after two years. Limited fair to good level of retrievable evidence to suggest lower mortality and morbidity rates in patients who had PDEP. Limited evidence demonstrated that patients who had PDEP had longer time to dialysis and better blood profiles compared to those who did not. Significantly lower peritonitis-related mortality rates and lower peritonitis-related morbidity rates were also noted in PD patients.

SafetyThere was no retrievable evidence on the safety issues with regards to PDEP for advanced CKD patients.

OrganisationalHospitalisation / Length of stayThere was fair to good level of retrievable evidence to suggest that PDEP was associated with significantly lower frequency of temporary catheter use, lower rates of hospitalisation at dialysis initiation and post- dialysis, as well as shorter length of hospital stay.

Components of programmeThe evidence showed great variation in the components of the programmes described, from the multidisciplinary team members, to the educational process including timing, delivery styles, formats for content, structure, conduct of the programme and materials. However, most evidence reported involvement of multidisciplinary team members almost always comprised of nephrologists, nurses, dietitians and medical social officers, with few had pharmacist, clinical psychologist and patient volunteers. Most studies mentioned multiple individual sessions with few had mixed of individual sessions and group sessions as well as patients’ involvement. Majority involved patients with CKD stage 4 and 5 in the programme, with content tailored according to the patients’ CKD stage and principally focused on knowledge on nutrition, lifestyle modification, nephrotoxin avoidance, compliance to medications, preparation for RRT and modality choices with few reported hands-on and demonstration. Materials used ranged from video materials, printed materials, and website materials. Frequency of the sessions and follow-up were mostly depended on the CKD stage.

GuidelinesFew guidelines from UK, USA, France, Europe and a position statement following an expert meeting in Switzerland have been issued outlining the recommendations on the conduct of PDEP.

Social/PsychologicalThere was fair to good level of retrievable evidence to suggest significant association between PDEP and patient’s choice as well as receipt of PD and home dialysis for RRT. Limited evidence also showed higher rates of pre-emptive kidney transplantation rates, higher levels of knowledge of end-stage renal disease and RRT options as well as higher levels of adherence, lower depression levels and anxiety levels, and better HRQL were noted in patients who had PDEP.

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Limited evidence also showed that patient factors including individualisation, educational factors including tailored education, appropriate time/information, and available resources as well as support systems were the influential factors on patients’ decision for RRT. Sub-optimal education, different perspectives between patients and staff, and the influence of patient experience were the three themes identified which related to improving PDEP.

Cost-effectivenessBased on two cost-analyses, significant reduction in medical expenditure after initiation of HD were noted in patients who had PDEP and the cost-saving effect came through the early preparation of vascular access and reduced hospitalisations.

4.1.2 PATIENT AND PUBLIC INVOLVEMENT IN PRE-DIALYSIS EDUCATION PROGRAMME

Based on the survey findings, patients and carers preferred to have a 30-minute single session with multiple educators every three months delivered by a multidisciplinary team consisting of doctor, dietitian, patient representative, medical social officer, psychologist, pharmacist, nurse and medical assistant with a mix of education materials such as hands-on session or demonstration, audio-visual aids, leaflets or pamphlets and information about websites or online videos in the hospital setting. The pre-dialysis education may be given as an individual (one-to-one) or group session depending on the patient’s preference. The pre-dialysis education should be initiated approximately six months before starting treatment of choice, allowing patients and carers to have sufficient time to understand about available treatment options. Patients and carers agreed that being part of a patient support group would be helpful in solving real-life problems and that shared decision-making between doctors and patients is important to them. The healthcare workers expressed different preferences in terms of delivery method, time of initiation, duration, frequency, and venue which may arise from consideration of practical aspects such as daily burden of workload and capacity in delivering the education sessions, which should be taken into consideration when designing the PDEP.

4.2 RECOMMENDATIONS

Based on the above review, a standardised approach to PDEP should be outlined before its expansion to all Ministry of Health, Malaysia facilities. A multidisciplinary team involving well-trained personnel, and optimally with mixed individual and group sessions as well as using interactive mixed education materials should be established. Comprehensive and more personalised content tailored according to the CKD stage taking account individual needs, emotional support, psychosocial aspects, involvement of family as well as caregivers and additional support from patients’ support group are advocated.

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42. Narva AS, Norton JM, Boulware LE. Educating patients about CKD: the path to self-management and patient-centered care. Clin J Am Soc Nephrol. 2016;11(4):694-703.

43. Cho EJ, Park HC, Yoon HB, Ju KD, Kim H, Oh YK, Yang J, HWANG YH, Ahn C, OH KH. Effect of multidisciplinary pre‐dialysis education in advanced chronic kidney disease: Propensity score matched cohort analysis. Nephrology. 2012;17(5):472-479.

44. Salter ML, Kumar K, Law AH, et al. Perceptions about hemodialysis and transplantation among African American adults with end-stage renal disease: inferences from focus groups. BMC Nephrol. 2015;16:49.

45. Hussain JA, Flemming K, Murtagh FE, et al. Patient and health care professional decision-making to commence and withdraw from renal dialysis: a systematic review of qualitative research. Clin J Am Soc Nephrol. 2015;10(7):1201-1215.

46. O. Nyumba T, Wilson K, Derrick CJ, et al. The use of focus group discussion methodology: Insights from two decades of application in conservation. Methods Ecol Evol. 2018;9(1):20-32.

47. Muscat DM, Kanagaratnam R, Shepherd HL, et al. Beyond dialysis decisions: a qualitative exploration of decision-making among culturally and linguistically diverse adults with chronic kidney disease on haemodialysis. BMC Nephrol. 2018;19(1):339.

56


6.0 APPENDICES Appendix 1

HIERARCHY OF EVIDENCE FOR EFFECTIVENESS STUDIES

DESIGNATION OF LEVELS OF EVIDENCE

I Evidence obtained from at least one properly designed randomized controlled trial.

II-I Evidence obtained from well-designed controlled trials without randomization.

II-2 Evidence obtained from well-designed cohort or case-control analytic studies, preferably from more than one centre or research group.

II-3 Evidence obtained from multiple time series with or without the intervention. Dramatic results in uncontrolled experiments (such as the results of the introduction of penicillin treatment in the 1940s) could also be regarded as this type of evidence.

III Opinions or respected authorities, based on clinical experience; descriptive studies and case reports; or reports of expert committees.

SOURCE: US/CANADIAN PREVENTIVE SERVICES TASK FORCE (Harris 2001)

57



Appendix 2

PTK-Bor-11

HEALTH TECHNOLOGY ASSESSMENT (HTA) PROTOCOLPRE-DIALYSIS EDUCATION PROGRAMME

1.0 BACKGROUND INFORMATIONChronic Kidney Disease (CKD) is a growing public health concern which is responsible for various complications including all-cause and cardiovascular mortality, kidney-disease progression to end-stage kidney disease, cognitive decline, anaemia, mineral and bone disorders.1 The Global Burden of Disease (GBD) 2015 study estimated that, in 2015, about 1.2 million people died from kidney failure, an increase of 32% since 2005.2 In 2010, it is estimated that around 2.3 to 7.1 million people with end-stage kidney disease died without access to chronic dialysis.2 However, despite of these growing figures, the awareness remains low among patients and health-care providers.1 In Malaysia, the prevalence of CKD has increased from 9.1% in the 2011 Malaysian National Health and Morbidity Survey3 to 15.5% in 20185. Awareness of CKD was hardly improved in seven years from 4% of respondents in 20115 to 5% in 2018.6 In the year of 2011, there were 27,572 patients on renal replacement therapy (RRT) in Malaysia5 and the figures have grown to a total of 37,183 patients on regular dialysis in 2015, with 7,595 new patients entering dialysis.3 The number of patients with CKD is expected to significantly rise in the future largely due to the increasing prevalence of diabetes, hypertension as well as the aging population in Malaysia.3 This will certainly contribute to the major increase in the future needs for RRT and impose a large burden on health care budget.

According to Malaysian Clinical Practice Guideline for Management of Chronic Kidney Disease (Second Edition) published in 2018, CKD is defined as an estimated glomerular filtration rate (eGFR) of <60 ml/min/1.73 m2 that is present for more than three months with or without evidence of kidney damage, or evidence of kidney damage that is present for more than three months with or without eGFR <60 ml/min/1.73 m2.3 Markers for kidney damage includes albuminuria (albumin excretion rate ≥30 mg/24 hours or albumin-creatinine ratio ≥3 mg/mmol), urine sediment abnormalities, abnormalities detected by histology, structural abnormalities detected by imaging and history of kidney transplantation.3 Classification of CKD is currently based on cause, GFR category, and albuminuria category (CGA) and follows Kidney Disease Improving Global Outcomes (KDIGO) 2012 guidelines which has health and prognostic implications.3,7 The GFR categories mapping to the previous five-stage classification have been retained but with subdivision of the G3 category of 30 to 59 mL/min per 1.73 m2 into categories G3a (45 to 59 mL/min per 1.73 m2) and G3b (30 to 44 mL/min per 1.73 m2).8 This was driven by data supporting different outcomes and risk profiles in these categories.8 Severity is expressed by level of GFR and albuminuria and is linked to risks for adverse outcomes, including death and kidney outcomes.8

58


Table 1. Prognosis of CKD by GFR and albuminuria category3,7

It is known that timely referral to nephrologist is recommended for RRT in people with progressive CKD in whom the risk of kidney failure within one year is 10–20% or higher, as determined by validated risk prediction tools.7 In the Malaysian Clinical Practice Guideline for Management of Chronic Kidney Disease (Second Edition) 2018, it is stated in the recommendation that CKD patient with rapidly declining renal function [loss of eGFR >5 ml/min/1.73 m2 in one year or >10 ml/min/1.73 m2 within five years] or eGFR <30 ml/min/1.73 m2 (eGFR categories G4 to G5) should be referred to a nephrologist/physician3. UK Renal Association recommends that all patients with severe CKD (stage 5 and progressive stage 4), alongside their families and carers, should be offered pre-dialysis education programme.9 This programme aims at improving knowledge and understanding of the condition, as well as assisting them in making decisions for RRT.9 However, in most studies, it is reported that about 40% to 60% of patients with CKD start dialysis in an unplanned fashion and/or under urgent circumstances despite regular follow-up by a nephrologist.10 This is of concern since in unplanned dialysis, patients forego the opportunity to make an informed, shared decision regarding the timing and modality of RRT as options for RRT under urgent conditions are often limited.10 Studies reported that advanced age, increased comorbidity burden, late referral to nephrology, and lower GFR at dialysis initiation were the most common independent risk factors for unplanned dialysis.10,11 In addition, patients who had unplanned dialysis were found much less likely to have received formal pre-dialysis education about the different options for RRT.10,11 This highlights the importance of a structured and comprehensive pre-dialysis education programme in preparing advanced-stage CKD patients for RRT as unplanned dialysis is known to be associated with increased patient morbidity, mortality, hospitalisations, needs for catheter insertion for haemodialysis which subsequently increase the risk of catheter related sepsis as well as central vein stenosis, and further, inevitably contribute to the economic burden of CKD.

Pre-dialysis education programme often described as multidisciplinary education programme, which consists of multiple education sessions where patients are educated by three or more health care professionals such as nephrologist, nurse, dietitian, medical social officer, home-dialysis coordinator, pharmacist, technician, or by other dialysis patients.11 There are variations in practice, however, pre-dialysis education programme usually includes individualised one-to-one sessions with a member or members of the multidisci plinary team and group discussions, peer counselling as well as problem-solving sessions have been described wherein patients discuss treatment modalities, as well as barriers, benefits, and troubleshooting of possible problems with other patients.11 Variety of formats have been described in the delivery style of the programme such as group lectures, interactive workshops, open forum sessions as well as written and audio-visual materials to take home.11,12 In its Clinical Practice Guideline for the Evaluation and Management of Chronic Kidney Disease, KDIGO

59



recommended that patients with progressive CKD should be managed in a multidisciplinary care setting.8 The multidisciplinary team should include or have access to dietary counselling, education and counselling about different RRT modalities, transplant options, vascular access surgery, and ethical, psychological, and social care.8 The aims for this programme are mainly to provide patients with information on end-stage kidney disease treatment options, helps decision-making between treatments, and encourages self-care to improve quality of life.12 A systematic approach with a pre-dialysis education programme is thought to assist patients in preparation for RRT and prevent the complications of unplanned dialysis subsequently reduce the complications of end-stage renal disease.

At present, there is no standard national programme established in Ministry of Health for pre-dialysis education. Pre-dialysis education for advanced CKD patients is often done in different ways across the country. Several centres in Peninsular Malaysia have specific programme for pre-dialysis education while numerous other centres lack such a programme. Certain hospitals conduct half-day talk monthly which involves sharing experiences by peritoneal dialysis, haemodialysis and kidney transplant nurses as well as exploring the funding options by the medical social officer and inputs by dietitian for CKD patients and family members. Effectiveness of such method in delivering pre-dialysis education for advanced CKD patients is largely unknown. Therefore, this health technology assessment was requested by Head of Nephrology Services, Ministry of Health, Malaysia to review the available evidence and feasibility of structured pre-dialysis education programme for advanced CKD patients before its adoption into national programme in Malaysia.

2.0 POLICY QUESTION

Should a structured pre-dialysis education programme be expanded in all Ministry of Health facilities?

3.0 OBJECTIVES

3.1 To assess the effectiveness and safety of pre-dialysis education programme for advanced CKD patients3.2 To assess the organisational, ethical, legal and societal implications related to pre- dialysis education programme for advanced CKD patients3.3 To assess the cost-effectiveness of pre-dialysis education programme for advanced CKD patients3.4 To assess the most suitable pre-dialysis education programme for Malaysian context

Research Questionsi) Is pre-dialysis education programme effective and safe for advanced CKD patients?ii) What are the organisational, ethical, legal and societal implications of pre-dialysis

education programme for advanced CKD patients?iii) Is pre-dialysis education programme cost-effective for advanced CKD patients?

4.0 METHODS4.1. Search Strategy4.1.1 Electronic databases will be searched for published literatures pertaining to pre-dialysis education programme for advanced CKD patients. The databases are MEDLINE, PubMed, and EBM Reviews-Cochrane Database of Systematic Review, EBM-Reviews-Cochrane Central Register of Controlled Trials, EBM Reviews-Health Technology Assessment,EBM Reviews-Cochrane Methodology Register, EBM Reviews-NHS Economic Evaluation Database, Database of Abstracts of Reviews of Effects (DARE), Horizon Scanning, INAHTA database, and HTA database. 4.1.2 Additional literatures will be identified from the references of the related articles.4.1.3 General search engine will also be used to get additional web-based information. 4.1.4 There will be no limitation applied in the search such as year and language.4.1.5 The search strategy will be included in the appendix.

60


4.2 Inclusion and Exclusion Criteria

4.2.1 Inclusion Criteria

a. Population :Adults patients with advanced CKD stage 4,5b. Intervention:Pre-dialysis education programme;

i. Multidisciplinary team comprised of nephrologists/ dieticians/ social workers/ pharmacists/ nurses/ psychologists/ HD or PD patient volunteers etc.

ii. Multiple sessionsiii. Relatively detailed description of the programme, such as sessions frequency, content of

sessions, and descriptions of educatorsc.Comparators :

i. No pre-dialysis education programme ii. No comparator

d.Outcome :i. Effectiveness

- Mortality- Morbidity- Quality of life

ii. Safety - adverse events - complications

iii. Organisational issues- Unplanned dialysis - Hospital admission- Length of hospital stay- Components of pre-dialysis education programme

(content, structure, delivery style, timing)- Training- Guidelines

iv. Ethical, legal implications v. Psychological/Societal implications

- Compliance- Acceptance- Patient satisfaction- Patient preference/ dialysis modality choice- Mental health issues

vi. Cost-effectiveness, economic evaluation, cost-analysis

e. Study design :Health technology assessment (HTA) reports, systematic reviews (SRs), randomised controlled trials (RCTs), non-randomised controlled trials (NRCTs), cohort study, case-control study, pre- and post- intervention, cross-sectional study and economic evaluation studies.

f. English full text articles

4.2.2 Exclusion Criteria a. Study design : Animal study, laboratory study, narrative review, case-series, case study, early stage CKD patients

b. Non English full text articles

Based on the above inclusion and exclusion criteria, study selection will be carried out independently by two reviewers. Disagreement will be resolved by discussion.

61



4.3 Critical Appraisal of Literature

The risk of bias (methodology quality) of all retrieved literatures will be assessed using the relevant checklist of Cochrane Collaboration Assessment tools, Critical Appraisal Skill Programme (CASP) by two reviewers depending on the type of the study design.

4.4 Analysis and Synthesis of Evidence

4.4.1 Data extraction strategy

The following data will be extracted:i. Details of methods and study population characteristicsii. Detail of intervention and comparatorsiii. Details on outcomes for effectiveness, safety and cost associated with pre-dialysis

education programme for advanced CKDiv. Details on organisational, ethical, legal and societal issues related to the practice

Data will be extracted from selected studies by a reviewer using a pre-designed data extraction form and checked by another reviewer. Disagreements will be resolved by discussion.

4.4.2 Methods of data synthesisData on the efficacy/effectiveness, safety and cost-effectiveness of pre-dialysis education programme will be presented in tabulated format with narrative summaries. Meta-analysis maybe conducted for this Health Technology Assessment.

4.5 Local economic evaluationPublished scientific evidence related to economic evaluation on pre-dialysis education programme will be examined first and if appropriate local data is available, local economic evaluation will be conducted for this HTA.

4.6 Patient involvementAs the target population for pre-dialysis education programme are advanced CKD patients, patients’ acceptance is deemed vital. Thus, patient engagement has been proposed to be included in this HTA. The mechanism of patient engagement will be scrutinised and conducted together in collaboration with nephrologists from Hospital Kuala Lumpur, Hospital Ampang and Hospital Tengku Ampuan Rahimah, Klang.

5.0 Report writing

6.0 References

1. Jha V, Garcia-Garcia G, Iseki K et al. Chronic kidney disease: global dimension and perspectives. Lancet.2013;382(9888):260-272.

2. Luyckx VA, Tonelli M, Stanifer JW. The global burden of kidney disease and the sustainable development goals. Bull World Health Organ. 2018;96(6):414-422D.

3. Ministry of Health, Malaysia. Clinical Practice Guidelines: Management of Chronic Kidney Disease (Second Edition). Available at www.moh.gov.my Accessed on 15th October 2019.

4. Hooi LS, Ong LM, Ahmad G et al. A population-based study measuring the prevalence of chronic kidney disease among adults in West Malaysia. Kidney Int. 2013;84(5):1034-1040.

5. Ministry of Health, Malaysia. National Action Plan For Healthy Kidneys (ACT-KID 2018-2025). Available at http://www.moh.gov.my/moh/resources/Penerbitan/Rujukan/NCD/National%20Strategic%20Plan/act_kid-1-min.pdf Accessed on 15th October 2019.

6. Bavanandan S, Saminathan T A, Hooi L S et al. Is Chronic Kidney Disease on the Rise in Malaysia? Findings from a nationwide study. Poster presented at The International Society of Nephrology (ISN) World Congress of Nephrology; 2019 April 12-15; Melbourne, Australia.

62


7. Kidney Disease:Improving Global Outcomes (KDIGO) CKD Work Group. KDIGO 2012 Clinical Practice Guideline for the Evaluation and Management of Chronic Kidney Disease. Kidney inter., Suppl. 2013; 3:1-150.

8. Stevens PE, Levin A; Kidney Disease: Improving Global Outcomes Chronic Kidney Disease Guideline Development Work Group Members. Evaluation and management of chronic kidney disease: synopsis of the kidney disease: improving global outcomes 2012 clinical practice guideline. Ann Intern Med. 2013 Jun 4;158(11):825-830.

9. UK Renal Association. Clinical Practice Guidelines: Planning, Initiating and Withdrawal of Renal Replacement Therapy (6th Edition). Available at https://renal.org/wp-content/uploads/2017/06/planning-initiation-finalf506a031181561659443ff000014d4d8.pdf Accessed on 15th October 2019.


11. Van den Bosch J, Warren DS, Rutherford PA. Review of predialysis education programmes: a need for standardization. Patient Prefer Adherence. 2015;9:1279-1291.


63



Appendix 3Search strategy:

Ovid MEDLINE(R) In-Process & Other Non-Indexed Citations and Ovid MEDLINE(R) <1946 to Present>

1 Kidney Failure, Chronic/ 2 (chronic adj2 (kidney failure or renal failure)).tw. 3 esrd.tw. 4 (end stage adj2 (kidney disease or renal disease)).tw. 5 (end-stage adj2 (kidney disease or renal disease or renal failure)).tw. 6 Renal Insufficiency, Chronic/ 7 (chronic adj2 (kidney disease* or renal disease*)).tw. 8 (chronic adj2 (renal insufficienc* or kidney insufficienc*)).tw. 9 esrf.tw.10 Advanced ckd.tw11 1 or 2 or 3 or 4 or 5 or 6 or 7 or 8 or 9 or 1012 HEALTH EDUCATION/ 13 community health education.tw.14 health education.tw.15 Pre-dialysis.tw.16 Predialysis.tw.17 Pre-dialysis education.tw.18 Predialysis education.tw.19 Pre-dialysis education program*.tw.20 Predialysis education program*.tw.21 Multidisciplinary pre-dialysis education.tw.22 Multidisciplinary predialysis education.tw.23 12 or 13 or 14 or 17 or 18 or 19 or 20 or 21 or 2224 11 and 23

PubMedSearch (((((((((((Kidney Failure, Chronic/[MeSH Terms]) OR ((chronic adj2 (kidney failure[Title/Abstract] OR renal failure))[Title/Abstract])) OR esrd[Title/Abstract]) OR ((end stage adj2 (kidney disease[Title/Abstract] OR renal disease)).[Title/Abstract])) OR ((end-stage adj2 (kidney disease[Title/Abstract] OR renal disease[Title/Abstract] OR renal failure))[Title/Abstract])) OR Renal Insufficiency, Chronic/[MeSH Terms]) OR ((chronic adj2 (kidney disease*[Title/Abstract] OR renal disease*))[Title/Abstract])) OR ((chronic adj2 (renal insufficienc*[Title/Abstract] OR kidney insufficienc*))[Title/Abstract])) OR esrf[Title/Abstract]) OR Advanced ckd[Title/Abstract])) AND (((((((((((HEALTH EDUCATION/[MeSH Terms]) OR community health education[Title/Abstract]) OR health education[Title/Abstract]) OR Pre-dialysis[Title/Abstract]) OR Predialysis[Title/Abstract]) OR Pre-dialysis education[Title/Abstract]) OR Predialysis education[Title/Abstract]) OR Pre-dialysis education program*[Title/Abstract]) OR Predialysis education program*[Title/Abstract]) OR Multidisciplinary pre-dialysis education[Title/Abstract]) OR Multidisciplinary predialysis education[Title/Abstract])

64


Evid

ence

Tab

le :

Effe

ctiv

enes

s Q

uest

ion

: How

effe

ctiv

e is

Pre

-dia

lysi

s Ed

ucat

ion

Prog

ram

me

for a

dvan

ced

CKD

pat

ient

s?

Bibl

iogr

aphi

c C

itatio

nSt

udy

Type

/Met

hods

LEN

umbe

r of

Patie

nts

& Pa

tient

C

hara

cter

istic

Inte

rven

tion

Com

paris

onLe

ngth

of

Fol

low

U

p

Out

com

e M

easu

res/

Effe

ct S

ize

Gen

eral

C

omm

ents

1.H

su C

K, L

ee

CC

, Che

n YT

et a

l. M

ultid

isci

plin

ary

pre-

dial

ysis

edu

catio

n (M

PE) r

educ

es

inci

denc

e of

per

itoni

tis

and

subs

eque

nt d

eath

in

per

itone

al d

ialy

sis

patie

nts:

5-y

ear c

ohor

t st

udy.

PLoS

One

. 20

18;1

3(8)

:e02

0278

1.

Taiw

an

Coh

ort s

tudy

Obj

ectiv

eTo

in

vest

igat

e im

pact

of

M

PE

on

the

occu

rrenc

e of

pe

riton

itis,

tim

e to

fir

st

epis

ode

of p

erito

nitis

and

pat

ient

out

com

es

of P

D p

atie

nts

who

rece

ive

this

edu

catio

nal

prog

ram

Met

hod

-All

patie

nts

star

ting

PD a

t D

epar

tmen

t of

N

ephr

olog

y, C

hang

G

ung

Mem

oria

l H

ospi

tal,

Keel

ung,

fro

m J

uly

1, 2

007

to

Dec

embe

r 31

, 20

16 w

ere

enro

lled

and

follo

w-u

p fo

r 5 y

ears

from

PD

initi

atio

n.-P

atie

nts

wer

e di

vide

d in

to M

PE g

roup

and

no

n-M

PE g

roup

acc

ordi

ng to

whe

ther

the

subj

ects

had

eve

r re

ceiv

ed M

PE b

efor

e st

artin

g re

nal r

epla

cem

ent t

hera

py.

-Inci

denc

es o

f pe

riton

itis

and

perit

oniti

s-re

late

d m

orta

lity

wer

e co

mpa

red

betw

een

MPE

reci

pien

ts a

nd n

on-re

cipi

ents

. -C

onte

nt o

f the

MPE

was

sta

ndar

dize

d in

ac

cord

ance

with

the

NKF

/DO

QI g

uide

lines

.-K

apla

n-M

eier

an

alys

is

and

Cox

pr

opor

tiona

l haz

ards

mod

el w

ere

appl

ied

to id

entif

y the

pro

gnos

tic fa

ctor

s ass

ocia

ted

with

per

itoni

tis-fr

ee s

urvi

val.

-Stu

dy e

ndpo

ints

:v

Epis

odes

of p

erito

nitis

v

Out

com

es

afte

r pe

riton

itis

(incl

udin

g ho

spita

lisat

ion,

te

chni

que

failu

re,

switc

hing

of

mod

ality

int

o he

mod

ialy

sis

or

deat

h)

II-2

398

PD p

atie

nts:

169

M

PE

229

No

MPE

be

fore

sta

rting

PD

.

-MPE

reci

pien

ts

olde

r (6

3.1±

16.2

vs.

58

.5±1

6.4

year

s ol

d, P

=0.0

06),

had

high

er p

reva

lenc

e of

dia

bete

s (6

0.4%

vs

43.

7%,

P< 0

.001

) -M

PE g

roup

had

lo

wer

bas

elin

e ed

ucat

iona

l lev

els

(P<

0.00

1)

-No

diffe

renc

es in

in

itial

labo

rato

ry

findi

ngs,

bas

elin

e pe

riton

eal

equi

libra

tion

test

(P

ET) a

nd P

D

adeq

uacy

bet

wee

n tw

o gr

oups

-P

atie

nts

drop

ped

out:

MPE

gro

up (s

witc

h to

HD

27,

dea

th

20) 2

0% v

s N

on-

MPE

gro

up (s

witc

h to

HD

16,

dea

th 6

) 13

%.

Mul

tidis

cipl

inar

y pr

e-di

alys

is

educ

atio

n (M

PE)

-Com

pris

ed a

nu

rse

of c

ase

mx,

so

cial

wor

kers

, di

etiti

ans,

10

neph

rolo

gist

s, a

nd

HD

&PD

pat

ient

vo

lunt

eers

. -D

eliv

ery

of

know

ledg

e on

nut

ritio

n su

pp, l

ifest

yle

mod

ifica

tion,

ne

phro

toxi

n av

oida

nce,

die

tary

pr

inci

ples

and

ph

arm

acol

ogic

al

regi

men

s by

nur

se

acc.

to C

KD s

tage

-M

onito

ring

of C

KD

com

plic

atio

ns,

prep

arat

ion

for

timel

y in

itiat

ion

of R

RT, c

are

of v

ascu

lar o

r pe

riton

eal a

cces

s,

and

regi

stra

tion

for i

nclu

sion

in th

e re

nal t

rans

plan

t w

aitin

g lis

t wer

e C

KP p

atie

nts.

Cus

tom

ary

care

(Non

-MPE

)

-Sam

e gr

oup

of n

ephr

olog

ist

who

inst

ruct

ed

pts

reg.

rena

l fu

nctio

n,

eval

uatio

n of

la

bora

tory

dat

a an

d th

e cl

inic

al

indi

cato

rs o

f re

nal f

ailu

re

as w

ell a

s tre

atm

ent

stra

tegi

es.

-Writ

ing

mat

eria

ls o

r bo

okle

ts g

iven

to

pat

ient

s if

verb

al

inst

ruct

ions

ar

e di

fficu

lt an

d w

ithou

t he

lp o

f cas

e-m

x nu

rse

5 ye

ars

afte

r PD

st

arts

Res

ults

:Af

ter

a 5-

year

s of

follo

w-u

p (m

ean

follo

w-

up d

urat

ion:

29.

4 m

onth

s; 3

0.1

mon

ths

in

MPE

gro

up v

s. 2

8.5

mon

ths;

Perit

oniti

s -M

PE

patie

nts

had

sign

ifica

ntly

le

ss

perit

oniti

s [0

.29±

0.72

vs

. 0.

64±1

.5

epis

odes

/per

son-

year

or

m

edia

n (IQ

R):

0 (0

.29)

vs.

0.1

1 (0

.69)

epi

sode

s/pe

rson

-ye

ar, P

< 0.

001]

than

non

-MPE

pat

ient

s.

Perit

oniti

s-re

late

d de

ath

rate

s-M

PE g

roup

had

low

er p

erito

nitis

-rel

ated

de

ath

rate

s co

mpa

red

to n

on-M

PE g

roup

(3

.6%

ver

sus

8.7%

, P=

0.04

).

Tim

e to

firs

t epi

sode

of p

erito

nitis

-Med

ian

time

to

the

first

ep

isod

e of

pe

riton

itis

in

the

non-

MPE

an

d M

PE

grou

ps w

as 3

3.9

mon

ths

and

46.7

mon

ths,

re

spec

tivel

y (C

ox-M

ante

l log

rank

test

, P =

0.

003)

. -C

ox re

gres

sion

ana

lysi

s re

veal

ed th

at th

e ed

ucat

iona

l lev

el b

elow

ele

men

tary

[h

azar

d ra

tio (H

R):

1.92

5; 9

5% (C

I): 1

.257

, 2.

874,

P=

0.00

3] a

nd th

e us

e of

MPE

(HR

: 0.

594;

95%

CI:

0.43

4, 0

.813

, P<

0.0

01)

wer

e si

gnifi

cant

in

depe

nden

t pr

edic

tors

fo

r pe

riton

itis-

free

surv

ival

, afte

r ad

just

ing

the

base

line

char

acte

ristic

s of

age

, gen

der,

diab

etes

, hy

perte

nsio

n an

d pe

riton

eal

mod

aliti

es

Aut

hors

con

clus

ion

In c

oncl

usio

n, a

n ef

ficie

nt s

tand

ardi

zed

MPE

pro

gram

adh

ered

to th

e N

FK/D

OQ

I

-Sin

gle

cent

re s

tudy

-edu

catio

n by

te

am, m

ultip

le

indi

vidu

al s

essi

ons

App

endi

x 4

65



Evid

ence

Tab

le :

Effe

ctiv

enes

s Q

uest

ion

: How

effe

ctiv

e is

Pre

-dia

lysi

s Ed

ucat

ion

Prog

ram

me

for a

dvan

ced

CKD

pat

ient

s?Bi

blio

grap

hic

Cita

tion

Stud

yTy

pe/M

etho

dsLE

Num

ber o

f Pat

ient

s &

Patie

nt C

hara

cter

istic

Inte

rven

tion

Com

paris

onLe

ngth

of

Follo

w U

p O

utco

me

Mea

sure

s/Ef

fect

Siz

eG

ener

al

Com

men

ts

2. Z

ukm

in K

, Ahm

ad

I, W

ynn

AK e

t al.

A co

mpa

rativ

e st

udy

to e

valu

ate

fact

ors

that

in

fluen

ce s

urvi

val

in m

ultid

isci

plin

ary

pred

ialy

sis

educ

ated

pa

tient

s an

d “C

rash

land

ers”

. Sa

udi J

Kid

ney

Dis

Tra

nspl

. 20

17;2

8(4)

:743

-75

0.

Brun

ei

Ret

rope

ctiv

e co

hort

st

udy

Obj

ectiv

e:To

com

pare

su

rviv

al p

roba

bilit

y, so

ciod

emog

raph

ic, a

nd

clin

ical

cha

ract

eris

tics

of m

ultid

isci

plin

ary

pre-

dial

ysis

edu

cate

d (M

PE)

and

non-

MPE

/cra

shla

nder

pa

tient

s

Met

hods

:- A

ll ne

w E

SRD

pa

tient

s w

ho s

tarte

d fir

st h

emod

ialy

sis

(HD

) fro

m J

anua

ry 2

013

to

Dec

embe

r 201

4 fro

m

Raj

a Is

teri

Peng

iran

Anak

Sa

leha

Hos

pita

l and

all

dial

ysis

cen

ters

in B

rune

i D

arus

sala

m w

ere

enro

lled

-Dat

a ex

tract

ed fr

om

clin

ical

regi

stry

and

dia

lysi

s re

cord

s.

-Dat

a in

clud

ed

soci

odem

ogra

phic

in

form

atio

n, c

linic

al

info

rmat

ion,

com

orbi

ditie

s,

surv

ival

sta

tus,

pre

-dia

lysi

s cl

inic

refe

rral,

choi

ce o

f R

RT, a

nd ty

pes

of v

ascu

lar

acce

ss (f

or H

D p

atie

nts)

.-S

urvi

val p

roba

bilit

y, so

ciod

emog

raph

ic, a

nd

clin

ical

cha

ract

eris

tics

of m

ultid

isci

plin

ary

pre-

dial

ysis

edu

cate

d (M

PE)

and

non-

MPE

/cra

shla

nder

pa

tient

s w

ere

com

pare

d.

II-2

Tota

l 350

new

cas

es

of E

SRD

-Med

ian

age

56.0

ye

ars.

-S

light

ly m

ore

mal

es

-Mal

ays

(86.

6%) n

on-

Mal

ays

(13.

4%)

-Med

ian

estim

ated

G

FR 4

.0 m

L/m

in/

1.73

m2 ,

-119

pat

ient

s (3

4.6%

) w

ere

dece

ased

at t

he

end

of s

tudy

per

iod.

-MPE

gro

ups

olde

r (P

=0.0

01),

diab

etic

s (P

=0.0

13),

and

HTN

(P

=0.0

16),

IHD

(P

=0.0

14),

and

usin

g ar

terio

veno

us fi

stul

a (P

<0.

001)

.

Mul

tidis

cipl

inar

y pr

e-di

alys

is e

duca

tion

(MPE

)(n

=180

)

-Mul

tidis

cipl

inar

y te

am

incl

udes

nep

hrol

ogis

ts,

nurs

e pr

actit

ione

rs,

diet

icia

ns, a

nd m

edic

al

soci

al w

orke

rs-N

urse

com

pris

e sp

ecifi

c nu

rses

that

spe

cial

ize

in

vasc

ular

acc

ess,

HD

, PD

, an

d tra

nspl

anta

tion

-Ger

iatri

cian

s an

d pa

lliativ

e ca

re te

am

occa

sion

ally

invo

lved

if

patie

nts

have

pre

-em

ptiv

ely

deci

ded

not t

o un

derg

o R

RT-C

linic

focu

ses

on

stra

tegi

es to

mai

ntai

n ta

rget

BP,

impr

ove

com

plia

nce

with

m

edic

atio

ns, n

utrit

iona

l ne

eds,

nep

hrot

oxin

s av

oida

nce,

and

fast

trac

k va

scul

ar s

ervi

ces

for

fistu

la fo

rmat

ions

and

ea

rly c

omm

ence

men

t of

RRT

-C

ultu

ral a

ccep

tanc

e an

d re

ligio

us c

ouns

ellin

g al

so c

over

ed in

this

cl

inic

to o

verc

ome

soci

al

stig

mat

izat

ion

and

impr

ove

psyc

holo

gica

l acc

epta

nce

No

MPE

(n=1

68)

2 ye

ars

Res

ults

:Su

rviv

al

Surv

ival

sta

tus

All p

atie

nts

MPE

(%)

Non

MPE

(%)

Aliv

e/ce

nsor

ed22

5 (6

5.4%

)12

7 (5

6.7%

)97

(43.

3%)

Dec

ease

d11

9 (3

4.6%

)52

(44.

1%)

66 (5

5.9%

)

-Des

pite

bei

ng o

lder

and

hav

ing

mor

e co

mor

bidi

ties,

MPE

pa

tient

s ha

ve b

ette

r sur

viva

l pro

babi

lity

(P =

0.0

28) a

nd a

34

% d

ecre

ased

risk

of d

ying

1 ye

ar (%

)2

year

s (%

)

MPE

79.8

%57

.7%

Non

-MPE

66.2

%60

.1%

- Th

e 1-

year

sur

viva

l rat

e w

as h

ighe

r in

MPE

gro

up

com

pare

d to

non

-MPE

(79.

8% v

ersu

s 66

.2%

). -

No

sign

ifica

nt d

iffer

ence

afte

r tw

o ye

ars

(57.

7% a

nd

60.1

%)

- O

lder

age

(P =

0.0

01),

high

ser

um c

reat

inin

e le

vel (

P <0

.001

), lo

wer

est

imat

ed G

FR (P

<0.

001)

, and

low

er

hem

oglo

bin

leve

l (P

= 0.

017)

wer

e as

soci

ated

with

the

redu

ctio

n in

the

surv

ival

pro

babi

lity.

Aut

hors

con

clus

ion:

Mul

tidis

cipl

inar

y pr

e-di

alys

is e

duca

tion

(MPE

) bef

ore

the

initi

atio

n of

RRT

con

tribu

ted

to g

reat

er s

urvi

val p

roba

bilit

y in

nea

r ESR

D p

atie

nts.

The

sur

viva

l ben

efits

wer

e ev

iden

t de

spite

the

pres

ence

of i

nher

ent r

isks

(old

er a

ge a

nd

pres

ence

of c

omor

bidi

ties)

in th

e M

PE p

opul

atio

n in

co

mpa

rison

with

the

non-

MPE

coh

ort.

Mul

ti-ce

ntre

st

udy

Educ

atio

n by

te

am, m

ultip

le

indi

vidu

al

sess

ions

66


Evid

ence

Tab

le :

Effe

ctiv

enes

s Q

uest

ion

: How

effe

ctiv

e is

Pre

-dia

lysi

s Ed

ucat

ion

Prog

ram

me

for a

dvan

ced

CKD

pat

ient

s?Bi

blio

grap

hic

Cita

tion

Stud

yTy

pe/M

etho

dsLE

Num

ber o

f Pa

tient

s &

Patie

nt

Cha

ract

eris

tic

Inte

rven

tion

Com

paris

onLe

ngth

of

Follo

w U

p O

utco

me

Mea

sure

s/Ef

fect

Siz

eG

ener

al

Com

men

ts

3. V

an d

en

Bosc

h J,

War

ren

DS,

Rut

herfo

rd

PA. R

evie

w

of p

redi

alys

is

educ

atio

npr

ogra

ms:

a n

eed

for s

tand

ardi

zatio

n.

Patie

ntPr

efer

Ad

here

nce.

20

15;9

:127

9-12

91.

Syst

emat

ic re

view

Obj

ectiv

e:

To re

view

evi

denc

e on

effe

ctiv

e co

mpo

nent

s of

pre

-dia

lysi

s ed

ucat

ion

prog

ram

mes

as

rela

ted

to m

odal

ity c

hoic

e an

d se

lect

ed

clin

ical

out

com

es.

Met

hod:

-Sys

tem

atic

sea

rch

was

per

form

ed o

n Pu

bMed

MED

LIN

E, C

ochr

ane

Libr

ary,

and

Ovi

d (fr

om J

anua

ry 1

, 199

5 to

Dec

embe

r 31

, 201

3)

-Incl

usio

n cr

iteria

app

lied:

v

Adul

ts o

nly

v

Pre-

dial

ysis

edu

catio

n fo

r CKD

st

age

III, I

V, a

nd V

v

Plan

ned

star

t pat

ient

s, u

npla

nned

st

art p

atie

nts,

and

pat

ient

s on

di

alys

is, i

e, in

cide

nt a

nd p

reva

lent

pa

tient

s.v

Det

aile

d de

scrip

tion

of

prog

ram

me

v

Mul

tiple

ses

sion

sv

Mul

tidis

cipl

inar

y pr

ogra

mm

e in

volv

ing

phys

icia

ns, n

urse

s,

diet

icia

ns, e

tc.

-Out

com

es in

clud

ed:

v

Dia

lysi

s m

odal

ity c

hoic

e an

d th

e nu

mbe

rs o

f pat

ient

s ch

oosi

ng

each

mod

ality

v

Any

clin

ical

out

com

e as

soci

ated

w

ith p

re-d

ialy

sis

educ

atio

n v

Hea

lth-re

late

d qu

ality

of l

ife

v

Mea

sure

s as

soci

ated

with

pat

ient

ch

oice

v

Fina

ncia

l im

pact

of p

atie

nts

choo

sing

mor

e ho

me

ther

apie

s v

Patie

nt s

atis

fact

ion

-Lite

ratu

re a

lso

revi

ewed

for a

ny in

form

atio

n on

pro

cess

es, p

athw

ays,

and

org

aniz

atio

n of

th

e pr

e-di

alys

is e

duca

tion

prog

ram

me

I29

rele

vant

stu

dies

:19

qua

si-e

xper

imen

tal

desi

gn10

nar

rativ

e re

view

s

-19

stud

ies

wer

e an

alys

ed fo

r effe

ctiv

e co

mpo

nent

s of

pre

-di

alys

is e

duca

tion

prog

ram

me

-Des

crip

tions

of

the

educ

atio

nal

proc

ess

varie

d an

d in

clud

ed in

divi

dual

an

d gr

oup

educ

atio

n,

mul

tidis

cipl

inar

y in

terv

entio

n, a

nd

vary

ing

dura

tion

and

frequ

ency

of s

essi

ons.

Pre-

dial

ysis

ed

ucat

ion

prog

ram

mes

Res

ults

:M

orta

lity

and

mor

bidi

ty-8

stu

dies

repo

rted

on m

orta

lity

and

mor

bidi

ty

(incl

udin

g bi

oche

mic

al in

dica

tors

, car

diov

ascu

lar

inci

dent

s, in

fect

ion

rate

s, e

mot

iona

l sta

tus)

. -A

ll st

udie

s re

porte

d be

tter r

ates

for t

he tr

eatm

ent

grou

p.

Cho

et a

l. (2

012)

Less

unp

lann

ed u

rgen

t dia

lysi

s (8

.7%

vs

24.2

%),

less

car

diac

eve

nts

(2.7

% v

s 9.

4%),

less

infe

ctio

ns

(4.0

% v

s 12

.1%

)

Klan

g et

al.

(199

8)Si

gnifi

cant

bet

ter m

ood,

less

mob

ility

prob

lem

s,

less

func

tiona

l dis

abilit

ies

and

low

er a

nxie

ty

Lacs

on e

t al.

(201

1)Si

gnifi

cant

bet

ter s

urvi

val r

ate

(adj

. HR

0.6

1)

Levi

n et

al.

(199

7)Be

tter b

ioch

emic

al m

arke

rs: b

lood

pre

ssur

e,

calc

ium

, pho

spha

te, a

nd a

nem

ia

Rio

ux e

t al.

(201

1)35

% o

f all

acut

e st

arte

rs a

dopt

ed h

ome

dial

ysis

vs

13%

bef

ore

prog

ram

Hal

l G e

t al (

2004

)Le

ss in

fect

ion

rate

s 18

.5 v

s. 3

1.8;

p =

0.0

0349

Souq

iyye

h M

Z e

t al.

(200

8)si

gnifi

cant

ly le

ss d

ropo

uts

for P

D (p

<0.0

2)

Aut

hors

con

clus

ion:

Ther

e is

a n

eed

for a

sta

ndar

dise

d ap

proa

ch

built

on

best

evi

denc

e fro

m C

KD a

nd a

lso

from

ot

her c

linic

al c

ondi

tions

and

exi

stin

g kn

owle

dge

on th

e ev

alua

tion

of c

ompl

ex in

terv

entio

ns to

en

sure

form

al e

valu

atio

n of

pre

dial

ysis

edu

catio

n pr

ogra

mm

es, a

nd th

eir e

ffect

s on

clin

ical

ou

tcom

es a

nd m

odal

ity c

hoic

e.

Mos

t with

out

cont

rol

grou

ps

67



Evid

ence

Tab

le :

Effe

ctiv

enes

s Q

uest

ion

: How

effe

ctiv

e is

Pre

-dia

lysi

s Ed

ucat

ion

Prog

ram

me

for a

dvan

ced

CKD

pat

ient

s?Bi

blio

grap

hic

Cita

tion

Stud

yTy

pe/M

etho

dsLE

Num

ber o

f Pa

tient

s &

Patie

nt

Cha

ract

eris

tic

Inte

rven

tion

Com

paris

onLe

ngth

of

Follo

w U

pO

utco

me

Mea

sure

s/Ef

fect

Siz

eG

ener

al

Com

men

ts

4. W

u IW

, Wan

g SY

, Hsu

KH

et a

l. M

ultid

isci

plin

ary

pred

ialy

sis

educ

atio

n de

crea

ses

the

inci

denc

e of

di

alys

is a

nd

redu

ces

mor

talit

y--a

co

ntro

lled

coho

rt st

udy

base

d on

th

e N

KF/D

OQ

I gu

idel

ines

. Nep

hrol

Dia

l Tra

nspl

ant.

2009

;24(

11):3

426-

3433

.

Taiw

an

Coh

ort s

tudy

Obj

ectiv

e:To

eva

luat

e th

e im

pact

of

mul

tidis

cipl

inar

y pr

e-di

alys

is

educ

atio

n (M

PE) o

n th

e in

cide

nce

of d

ialy

sis

and

outc

omes

of C

KD p

atie

nts

in a

ccor

danc

e w

ith th

e gu

idel

ines

of t

he N

atio

nal

Kidn

ey F

ound

atio

n D

ialy

sis

Out

com

es Q

ualit

y In

itiat

ive

(NKF

/DO

QI).

Met

hods

:-A

ll st

udy

parti

cipa

nts

wer

e pr

e-di

alys

is C

KD p

atie

nts

who

vis

ited

the

neph

rolo

gy

outp

atie

nt c

linic

s of

the

Dep

artm

ent o

f Nep

hrol

ogy

at C

hang

Gun

g M

emor

ial

Hos

pita

l in

Taip

ei a

nd

Keel

ung

from

May

200

6 to

M

ay 2

007.

-Pat

ient

s w

ere

clas

sifie

d in

to s

tage

s III

, IV

or V

in

acco

rdan

ce w

ith th

e N

KF/

DO

QI c

lass

ifica

tion

syst

em-In

form

atio

n w

as c

olle

cted

fo

r fur

ther

ana

lyse

s,

incl

udin

g de

mog

raph

ic

varia

bles

, cau

ses

of p

rimar

y re

nal d

isea

se, i

nitia

l sta

tus

of re

nal f

unct

ion,

obv

ious

ur

aem

ic

-All

parti

cipa

nts

wer

e di

vide

d in

to tw

o co

horts

acc

ordi

ng to

th

e si

tes:

v

MPE

gro

up a

t th

e Ke

elun

g ce

ntre

v

Non

-MPE

gro

up

at T

aipe

i cen

tre.

-Pat

ient

s w

ere

atte

nded

by

sam

e gr

oup

of n

ephr

olog

ists

un

der s

ame

follo

w-u

p sc

hem

a, a

nd w

ere

follo

wed

up

for 1

2 m

onth

s fo

r dia

lysi

s in

itiat

ion

or m

orta

lity

from

an

y ca

use.

II-2

Stud

y in

volv

ed 5

73

CKD

pat

ient

s:v

287

rece

ived

M

PE

v

286

Non

M

PE

-317

(55.

3%) w

ere

mal

es a

nd 2

56

(44.

7%) f

emal

es;

-Ave

rage

age

was

63

.4±1

4.8

year

s.-M

ean

eGFR

: 2

3.8

±20.

1 m

L/m

in/1

.73

-Sta

ge II

I 157

(2

7.4%

) S

tage

IV 1

23

(21.

5%)

Sta

ge V

293

(5

1.1%

)- M

PE re

cipi

ents

ol

der

(65.

5±13

.9 v

s 61

.2±1

4.8

year

s ol

d,

P=0.

048)

with

muc

h lo

wer

pre

vale

nce

of

hype

rtens

ion

(5.2

% v

s 22

%,

P <

0.00

1).

Mul

tidis

cipl

inar

y pr

e-di

alys

is

educ

atio

n (M

PE)

-Com

pris

ed a

nur

se fo

r ca

se m

x, s

ocia

l wor

kers

, di

etiti

ans,

HD

and

PD

pa

tient

vol

unte

ers

and

10

neph

rolo

gist

s-P

rogr

amm

e co

nsis

ted

of

inte

grat

ed c

ours

e in

volv

ing

indi

vidu

al le

ctur

es o

n re

nal

heal

th, d

eliv

ered

by

case

-mx

nurs

e-L

ectu

res

focu

sed

on n

utrit

ion,

life

styl

e,

neph

roto

xin

avoi

danc

e,

diet

ary

prin

cipl

es a

nd

phar

mac

olog

ical

regi

men

s-S

tand

ardi

zed

inte

ract

ive

educ

atio

nal s

essi

ons

wer

e pe

riodi

cally

con

duct

ed w

here

al

l pat

ient

s w

ere

inte

rvie

wed

de

pend

ing

on C

KD s

tage

-Sta

ge II

I or I

V C

KD p

atie

nts:

f/u

p 3m

onth

ly, s

tage

V: f

/up

mon

thly

-Sta

ge II

I pat

ient

s:

prog

ram

me

cons

iste

d of

le

ctur

es o

n he

alth

y re

nal

func

tion,

clin

ical

pre

sent

atio

n of

ura

emia

, ris

k fa

ctor

s an

d co

mpl

icat

ions

ass

ocia

ted

with

rena

l pro

gres

sion

and

an

intro

duct

ion

to th

e va

rious

R

RTs

-Sta

ge IV

pat

ient

s:

prog

ram

me

incl

uded

di

scus

sion

s on

the

mx

of

com

plic

atio

ns a

ssoc

iate

d w

ith C

KD, i

ndic

atio

ns o

f RRT

an

d ev

alua

tion

of v

ascu

lar o

r pe

riton

eal a

cces

s.

-Sta

ge V

pat

ient

s:

mon

itore

d fo

r tim

ely

initi

atio

n of

RRT

, car

e of

vas

cula

r or

perit

onea

l acc

ess,

dia

lysi

s-as

soci

ated

com

plic

atio

ns

and

regi

stra

tion

for i

nclu

sion

in

the

rena

l tra

nspl

ant

wai

ting

list

Cus

tom

ary

care

-Sam

e gr

oup

of n

ephr

olog

ist

inst

ruct

ed

parti

cipa

nts

rega

rdin

g re

nal f

unct

ion,

ev

alua

tion

of la

b da

ta

and

clin

ical

in

dica

tors

of

chro

nic

rena

l fa

ilure

as

wel

l as

stra

tegi

es

for m

x &

tx-G

ener

al

prin

cipl

es o

f H

D a

nd P

D

expl

aine

d w

hen

patie

nts

ente

r sta

ge IV

-All

patie

nts

prov

ided

w

ith w

ritte

n in

stru

ctio

ns.

-Com

orbi

dity

fa

ctor

s ev

alua

ted

befo

re re

ferra

l to

nur

se

spec

ializ

ing

in

HD

or P

D.

-Nur

sing

sta

ff pr

ovid

ed

inst

ruct

ions

fo

r dai

ly li

ving

an

d ex

plai

ned

crite

ria fo

r H

D a

nd P

D

sele

ctio

n an

d th

e di

ffere

nce

betw

een

mod

aliti

es.

12 Mon

ths

-Mea

n fo

llow

-up

perio

d w

as

11.7

±0.9

m

onth

s.

Res

ults

:In

cide

nce

of d

ialy

sis

-Dia

lysi

s w

as in

itiat

ed in

13.

9% a

nd 4

3% o

f the

pat

ient

s in

the

MPE

an

d no

n-M

PE g

roup

s, re

spec

tivel

y (P

< 0

.001

)-T

ime

to d

ialy

sis

was

sig

nific

antly

long

er fo

r MPE

gro

up (1

1.3

mon

ths)

vs

Non

-MPE

gro

up (9

.2 m

onth

s) (P

<0.0

01)

-MPE

reci

pien

ts s

how

ed:

v

a hi

gher

ser

um a

lbum

in le

vel (

3.8

± 0.

5 ve

rsus

3.4

±

0.5

g/dL

, P =

0.0

50),

v

low

er s

erum

hs-

CR

P le

vel (

3.3±

2.8

vers

us 5

.5±5

.6

mg/

L, P

=0.0

32),

v

low

er s

erum

ferri

tin c

once

ntra

tion

(284

± 3

1 ve

rsus

532

±

59 n

g/m

L, P

= 0

.049

),

v

high

er P

D u

ptak

e (3

5% v

ersu

s 20

.5%

, P =

0.0

23),

v

low

er fr

eque

ncy

of te

mpo

rary

vas

cula

r cat

hete

r use

(2

5% v

ersu

s 50

.4%

; P <

0.0

5)

v

and

grea

ter p

ost-d

ialy

sis

body

wei

ghts

(65±

10 v

ersu

s 58

±11

kg, P

=0.0

34) t

han

the

non-

MPE

pat

ient

s.

Mor

talit

y-O

vera

ll m

orta

lity

was

1.7

% a

nd 1

0.1%

in th

e M

PE a

nd n

on-M

PE

grou

ps, r

espe

ctiv

ely

(P <

0.0

01).

-Med

ian

surv

ival

tim

e in

the

non-

MPE

and

MPE

gro

ups

was

11.

2 an

d 11

.9 m

onth

s, re

spec

tivel

y (C

ox–M

ante

l log

rank

test

, P<0

.001

)-A

djus

ted

haza

rd ra

tio o

f mor

talit

y fo

r MPE

reci

pien

ts w

as 0

.103

[9

5% c

onfid

entia

l int

erva

l (C

I) 0.

040,

0.2

65, P

< 0

.001

], af

ter

adju

stm

ent f

or a

ge, g

ende

r, di

abet

es, h

yper

tens

ion,

eG

FR, H

b,

seru

m a

lbum

in, h

s-C

RP

-Cox

regr

essi

on a

naly

sis

reve

aled

that

dia

bete

s, e

stim

ated

gl

omer

ular

filtr

atio

n ra

te (e

GFR

), hi

gh-s

ensi

tive

C-re

activ

e pr

otei

n (h

s-C

RP)

and

MPE

ass

ignm

ent w

ere

sign

ifica

nt in

depe

nden

t pr

edic

tors

for p

rogr

essi

on to

ESR

D.

-Inde

pend

ent p

rogn

ostic

fact

ors

for m

orta

lity

incl

uded

age

, di

abet

es, e

GFR

, hs-

CR

P an

d M

PE a

ssig

nmen

t

Aut

hors

con

clus

ion:

An e

ffici

ent s

tand

ardi

zed

MPE

pro

gram

me

com

plyi

ng w

ith th

e N

KF/D

OQ

I gui

delin

es m

ay d

ecre

ase

the

inci

denc

e of

dia

lysi

s an

d re

duce

the

all-c

ause

mor

talit

y an

d th

e ov

eral

l hos

pita

lisat

ion

rate

in

CKD

pat

ient

s. T

his

valu

able

info

rmat

ion

confi

rms

the

role

of M

PE in

th

e ca

re o

f CKD

pat

ient

s

Mul

tiple

in

divi

dual

se

ssio

ns

with

team

m

embe

rs

+ pa

tient

s vo

lunt

eers

68


Evid

ence

Tab

le :

Org

anis

atio

nal (

HO

SPIT

ALIS

ATIO

N)

Que

stio

n : W

hat a

re th

e or

gani

satio

nal i

ssue

s w

ith re

gard

s to

Pre

-dia

lysi

s Ed

ucat

ion

Prog

ram

me

for a

dvan

ced

CKD

pat

ient

s?Bi

blio

grap

hic

Cita

tion

Stud

yTy

pe/M

etho

dsLE

Num

ber o

f Pat

ient

s &

Patie

nt C

hara

cter

istic

Inte

rven

tion

Com

paris

onLe

ngth

of

Follo

w U

p O

utco

me

Mea

sure

s/Ef

fect

Siz

eG

ener

al

Com

men

ts

1.H

su C

K, L

ee C

C, C

hen

YT e

t al.

Mul

tidis

cipl

inar

y pr

e-di

alys

is e

duca

tion

(MPE

) red

uces

inci

denc

e of

per

itoni

tis a

ndsu

bseq

uent

dea

th

in p

erito

neal

dia

lysi

s pa

tient

s: 5

-yea

r coh

ort

stud

y. PL

oS O

ne.

2018

;13(

8):e

0202

781.

Taiw

an

Coh

ort s

tudy

Obj

ectiv

eTo

inve

stig

ate

impa

ct o

f MPE

on

the

occu

rrenc

e of

per

itoni

tis, t

ime

to fi

rst e

piso

de o

f pe

riton

itis

and

patie

nt o

utco

mes

of P

D p

atie

nts

who

rece

ive

this

edu

catio

nal p

rogr

am

Met

hod

-All

patie

nts

star

ting

PD a

t Dep

artm

ent o

f N

ephr

olog

y, C

hang

Gun

g M

emor

ial H

ospi

tal,

Keel

ung,

from

Jul

y 1,

200

7 to

Dec

embe

r 31,

20

16 w

ere

enro

lled

and

pros

pect

ivel

y fo

llow

-up

for 5

yea

rs fr

om P

D in

itiat

ion.

-Pat

ient

s w

ere

divi

ded

into

MPE

gro

up a

nd

non-

MPE

gro

up a

ccor

ding

to w

heth

er th

e su

bjec

ts h

ad e

ver r

ecei

ved

MPE

bef

ore

star

ting

rena

l rep

lace

men

t the

rapy

.-In

cide

nces

of p

erito

nitis

and

per

itoni

tis-re

late

d m

orta

lity

wer

e co

mpa

red

betw

een

MPE

re

cipi

ents

and

non

-reci

pien

ts.

-Con

tent

of t

he M

PE w

as s

tand

ardi

zed

in

acco

rdan

ce w

ith th

e N

KF/D

OQ

I gui

delin

es.

-Kap

lan-

Mei

er a

naly

sis

and

Cox

pro

porti

onal

ha

zard

s m

odel

wer

e ap

plie

d to

iden

tify

the

prog

nost

ic fa

ctor

s as

soci

ated

with

per

itoni

tis-

free

surv

ival

.-S

tudy

end

poin

ts:

v

Epis

odes

of p

erito

nitis

v

Out

com

es a

fter p

erito

nitis

(in

clud

ing

hosp

italis

atio

n, te

chni

que

failu

re, s

witc

hing

of m

odal

ity in

to

hem

odia

lysi

s or

dea

th)

-Pat

ient

s w

ho d

rop-

out f

rom

PD

(dea

th, r

enal

tra

nspl

ant,

switc

h to

hem

odia

lysi

s) b

efor

e de

velo

pmen

t of fi

rst p

erito

nitis

wer

e ce

nsor

ed.

II-2

398

PD p

atie

nts:

169

M

PE

229

No

MPE

bef

ore

star

ting

PD.

-MPE

reci

pien

ts

olde

r (6

3.1±

16.2

vs.

58

.5±1

6.4

year

s ol

d, P

=0.0

06),

had

high

er p

reva

lenc

e of

dia

bete

s (6

0.4%

vs

43.

7%,

P< 0

.001

) -M

PE g

roup

had

lo

wer

bas

elin

e ed

ucat

iona

l lev

els

(P<

0.00

1)

-No

diffe

renc

es in

in

itial

labo

rato

ry

findi

ngs,

bas

elin

e pe

riton

eal

equi

libra

tion

test

(P

ET) a

nd P

D

adeq

uacy

bet

wee

n tw

o gr

oups

-P

atie

nts

drop

ped

out:

MPE

gro

up (s

witc

h to

HD

27,

dea

th 2

0)

20%

vs

Non

-MPE

gr

oup

(sw

itch

to

HD

16,

dea

th 6

) 13

%.

Mul

tidis

cipl

inar

y pr

e-di

alys

is e

duca

tion

(MPE

)

-Com

pris

ed a

nur

se o

f ca

se m

x, s

ocia

l wor

kers

, di

etiti

ans,

10

neph

rolo

gist

s,

and

HD

&PD

pat

ient

vo

lunt

eers

. -D

eliv

ery

of k

now

ledg

e on

nut

ritio

n su

pp,

lifes

tyle

mod

ifica

tion,

ne

phro

toxi

n av

oida

nce,

di

etar

y pr

inci

ples

and

ph

arm

acol

ogic

al re

gim

ens

by n

urse

acc

. to

CKD

sta

ge

-Mon

itorin

g of

CKD

co

mpl

icat

ions

, pre

para

tion

for t

imel

y in

itiat

ion

of

RRT

, car

e of

vas

cula

r or

perit

onea

l acc

ess,

and

re

gist

ratio

n fo

r inc

lusi

on in

th

e re

nal t

rans

plan

t wai

ting

list w

ere

also

inst

ruct

ed fo

r la

te s

tage

CKD

pat

ient

s.

-Sha

red

deci

sion

mak

ing

was

don

e fo

r the

se p

atie

nts

for t

heir

choi

ce o

f RRT

. -B

enefi

t, di

sadv

anta

ge

and

self-

care

for d

iffer

ent

mod

ality

was

exp

lain

ed.

-All

patie

nts

also

rece

ived

di

etar

y co

unse

lling

bian

nual

ly fr

om a

die

titia

n.-M

PE p

rogr

am

disc

ontin

ued

once

the

patie

nts

initi

ate

dial

ysis

th

erap

y

Cus

tom

ary

care

(Non

-MPE

)

-Sam

e gr

oup

of

neph

rolo

gist

w

ho

inst

ruct

ed

pts

reg.

rena

l fu

nctio

n,

eval

uatio

n of

labo

rato

ry

data

and

th

e cl

inic

al

indi

cato

rs o

f re

nal f

ailu

re

as w

ell a

s tre

atm

ent

stra

tegi

es.

-Writ

ing

mat

eria

ls

or b

ookl

ets

give

n to

pa

tient

s if

verb

al

inst

ruct

ions

is

diffi

cult

and

with

out h

elp

of c

ase-

mx

nurs

e

5 ye

ars

afte

r PD

st

arts

Res

ults

:Af

ter a

5-y

ears

of

follo

w-u

p (m

ean

follo

w-u

p du

ratio

n:

29.4

mon

ths;

30.

1 m

onth

s in

MPE

gr

oup

vs. 2

8.5

mon

ths;

Hos

pita

lisat

ion

and

tech

niqu

e fa

ilure

s-N

o si

gnifi

cant

di

ffere

nce

betw

een

two

grou

ps in

fre

quen

cy o

f ho

spita

lizat

ion

(med

ian

(IQR

), ep

isod

es/p

erso

n-ye

ar :

1.36

(2.4

3) in

M

PE g

roup

vs

1.15

(2

.04)

in n

on-M

PE

grou

p, P

=0.6

6 an

d th

e pe

rcen

tage

of

tech

niqu

e fa

ilure

s re

quiri

ng s

hifti

ng o

f m

odal

ity to

HD

(due

to

eith

er p

erito

nitis

; 9.

5% in

MPE

vs.

11

.8%

in n

on-

MPE

, or p

oor fl

uid

man

agem

ent;

1.8%

in

MPE

vs.

2.2

% in

no

n-M

PE)

Sing

lece

ntre

st

udy

-edu

catio

n by

team

, m

ultip

le

indi

vidu

al

sess

ions

69



Evid

ence

Tab

le :

Org

anis

atio

nal (

HO

SPIT

ALIS

ATIO

N)

Que

stio

n : W

hat a

re th

e or

gani

satio

nal i

ssue

s w

ith re

gard

s to

Pre

-dia

lysi

s Ed

ucat

ion

Prog

ram

me

for a

dvan

ced

CKD

pat

ient

s?Bi

blio

grap

hic

Cita

tion

Stud

yTy

pe/M

etho

dsLE

Num

ber o

f Pa

tient

s &

Patie

nt

Cha

ract

eris

tic

Inte

rven

tion

Com

paris

onLe

ngth

of

Follo

w U

p O

utco

me

Mea

sure

s/Ef

fect

Siz

eG

ener

al

Com

men

ts

2. V

an d

en

Bosc

h J,

W

arre

n D

S,

Rut

herfo

rd

PA. R

evie

w

of p

redi

alys

is

educ

atio

npr

ogra

ms:

a

need

for

stan

dard

izat

ion.

Pa

tient

Pre

fer

Adhe

renc

e.

2015

;9:1

279-

1291

.

Syst

emat

ic re

view

Obj

ectiv

e:

To re

view

evi

denc

e on

effe

ctiv

e co

mpo

nent

s of

pre

-dia

lysi

s ed

ucat

ion

prog

ram

mes

as

rela

ted

to m

odal

ity c

hoic

e an

d se

lect

ed

clin

ical

out

com

es.

Met

hod:

-Sys

tem

atic

sea

rch

was

per

form

ed o

n Pu

bMed

MED

LIN

E,

Coc

hran

e Li

brar

y, an

d O

vid

(from

Jan

uary

1, 1

995

to D

ecem

ber 3

1,

2013

) -In

clus

ion

crite

ria a

pplie

d:

v

Adul

ts o

nly

v

Pre-

dial

ysis

edu

catio

n fo

r CKD

pat

ient

s st

age

III, I

V, a

nd

V

v

Plan

ned

star

t pat

ient

s, u

npla

nned

sta

rt pa

tient

s, a

nd

patie

nts

on d

ialy

sis,

ie, i

ncid

ent a

nd p

reva

lent

pat

ient

s.

v

Det

aile

d de

scrip

tion

of p

rogr

amm

e

v

Mul

tiple

ses

sion

s

v

Mul

tidis

cipl

inar

y pr

ogra

mm

e in

volv

ing

phys

icia

ns, n

urse

s,

diet

icia

ns, e

tc.

-Out

com

es in

clud

ed:

v

Dia

lysi

s m

odal

ity c

hoic

e an

d th

e nu

mbe

rs o

f pat

ient

s ch

oosi

ng e

ach

mod

ality

v

Any

clin

ical

out

com

e as

soci

ated

with

pre

-dia

lysi

s ed

ucat

ion

v

Hea

lth-re

late

d qu

ality

of l

ife

v

Mea

sure

s as

soci

ated

with

pat

ient

cho

ice

v

Fina

ncia

l im

pact

of p

atie

nts

choo

sing

mor

e ho

me

ther

apie

s

v

Patie

nt s

atis

fact

ion

-Lite

ratu

re a

lso

revi

ewed

for a

ny in

form

atio

n on

pro

cess

es,

path

way

s, a

nd o

rgan

izat

ion

of th

e pr

e-di

alys

is e

duca

tion

prog

ram

mes

I29

rele

vant

stu

dies

:19

qua

si-

expe

rimen

tal

desi

gn10

nar

rativ

e re

view

s

-19

stud

ies

wer

e an

alys

ed

for e

ffect

ive

com

pone

nts

of p

re-

dial

ysis

edu

catio

n pr

ogra

mm

e

-Des

crip

tions

of

the

educ

atio

nal

proc

ess

varie

d an

d in

clud

ed

indi

vidu

al a

nd

grou

p ed

ucat

ion,

m

ultid

isci

plin

ary

inte

rven

tion,

and

va

ryin

g du

ratio

n an

d fre

quen

cy o

f se

ssio

ns.

Pre-

dial

ysis

ed

ucat

ion

prog

ram

mes

Res

ults

Hos

pita

lisat

ion

Two

stud

ies

repo

rted

on

leng

th o

f hos

pita

l sta

y, w

hich

was

low

er fo

r the

ed

ucat

ion

grou

ps

(6.5

ver

sus

13.5

tota

l ho

spita

l day

s; 2

.2

vers

us 5

.1 h

ospi

tal

days

/pat

ient

per

yea

r).

Mos

tly

with

out

cont

rol

grou

p

70


Evid

ence

Tab

le :

Org

anis

atio

nal (

HO

SPIT

ALIS

ATIO

N)

Que

stio

n : W

hat a

re th

e or

gani

satio

nal i

ssue

s w

ith re

gard

s to

Pre

-dia

lysi

s Ed

ucat

ion

Prog

ram

me

for a

dvan

ced

CKD

pat

ient

s?Bi

blio

grap

hic

Cita

tion

Stud

yTy

pe/M

etho

dsLE

Num

ber o

f Pa

tient

s &

Patie

nt

Cha

ract

eris

tic

Inte

rven

tion

Com

paris

onLe

ngth

of

Follo

w U

p O

utco

me

Mea

sure

s/Ef

fect

Siz

eG

ener

al

Com

men

ts

3. W

u IW

, Wan

g SY

, Hsu

KH

et a

l. M

ultid

isci

plin

ary

pred

ialy

sis

educ

atio

n de

crea

ses

the

inci

denc

e of

di

alys

is a

nd

redu

ces

mor

talit

y--a

co

ntro

lled

coho

rt st

udy

base

d on

the

NKF

/D

OQ

I gui

delin

es.

Nep

hrol

Dia

l Tra

nspl

ant.

2009

;24(

11):3

426-

3433

.

Taiw

an

Coh

ort s

tudy

Obj

ectiv

e:To

eva

luat

e th

e im

pact

of m

ultid

isci

plin

ary

pre-

dial

ysis

edu

catio

n (M

PE) o

n th

e in

cide

nce

of d

ialy

sis

and

outc

omes

of

CKD

pat

ient

s in

acc

orda

nce

with

th

e gu

idel

ines

of t

he N

atio

nal K

idne

y Fo

unda

tion

Dia

lysi

s O

utco

mes

Qua

lity

Initi

ativ

e (N

KF/D

OQ

I).

Met

hods

:-A

ll st

udy

parti

cipa

nts

wer

e pr

e-di

alys

is

CKD

pat

ient

s w

ho v

isite

d th

e ne

phro

logy

ou

tpat

ient

clin

ics

of th

e D

epar

tmen

t of

Nep

hrol

ogy

at C

hang

Gun

g M

emor

ial

Hos

pita

l in

Taip

ei a

nd K

eelu

ng fr

om M

ay

2006

to M

ay 2

007.

-Pat

ient

s w

ere

clas

sifie

d in

to s

tage

s III

, IV

or V

in a

ccor

danc

e w

ith th

e N

KF/D

OQ

I cl

assi

ficat

ion

syst

em-In

form

atio

n w

as c

olle

cted

for f

urth

er

anal

yses

, inc

ludi

ng d

emog

raph

ic

varia

bles

, cau

ses

of p

rimar

y re

nal

dise

ase,

initi

al s

tatu

s of

rena

l fun

ctio

n,

obvi

ous

urae

mic

-A

ll pa

rtici

pant

s w

ere

divi

ded

into

two

coho

rts a

ccor

ding

to th

e si

tes:

v

MPE

gro

up a

t the

Kee

lung

ce

ntre

v

Non

-MPE

gro

up a

t Tai

pei

cent

re.

-Pat

ient

s w

ere

atte

nded

by

sam

e gr

oup

of n

ephr

olog

ists

und

er s

ame

follo

w-u

p sc

hem

a, a

nd w

ere

follo

wed

up

for 1

2 m

onth

s fo

r dia

lysi

s in

itiat

ion

or m

orta

lity

from

any

cau

se.

II-2

Stud

y in

volv

ed 5

73

CKD

pat

ient

s:v

287

rece

ived

M

PE

v

286

Non

M

PE

-317

(55.

3%) w

ere

mal

es a

nd 2

56

(44.

7%) f

emal

es;

-Ave

rage

age

was

63

.4±1

4.8

year

s.-M

ean

eGFR

: 2

3.8

±20.

1 m

L/m

in/1

.73

-Sta

ge II

I 157

(2

7.4%

) S

tage

IV 1

23

(21.

5%)

Sta

ge V

293

(5

1.1%

)- M

PE re

cipi

ents

ol

der

(65.

5±13

.9 v

s 61

.2±1

4.8

year

s ol

d, P

=0.0

48)

with

muc

h lo

wer

pr

eval

ence

of

hype

rtens

ion

(5.2

% v

s 22

%,

P <

0.00

1).

Mul

tidis

cipl

inar

y pr

edia

lysi

s ed

ucat

ion

(MPE

)-C

ompr

ised

a n

urse

for c

ase

mx,

so

cial

wor

kers

, die

titia

ns, H

D a

nd

PD p

atie

nt v

olun

teer

s an

d 10

ne

phro

logi

sts

-Pro

gram

me

cons

iste

d of

in

tegr

ated

cou

rse

invo

lvin

g in

divi

dual

lect

ures

on

rena

l hea

lth,

deliv

ered

by

case

-mx

nurs

e-L

ectu

res

focu

sed

on n

utrit

ion,

lif

esty

le, n

ephr

otox

in a

void

ance

, di

etar

y pr

inci

ples

and

ph

arm

acol

ogic

al re

gim

ens

-Sta

ndar

dize

d in

tera

ctiv

e ed

ucat

iona

l ses

sion

s w

ere

perio

dica

lly c

ondu

cted

whe

re

all p

atie

nts

wer

e in

terv

iew

ed

depe

ndin

g on

CKD

sta

ge-S

tage

III o

r IV

CKD

pat

ient

s: f/

up

3mon

thly,

sta

ge V

: f/u

p m

onth

ly-S

tage

III p

atie

nts:

pro

gram

me

cons

iste

d of

lect

ures

on

heal

thy

rena

l fun

ctio

n, c

linic

al p

rese

ntat

ion

of u

raem

ia, r

isk

fact

ors

and

com

plic

atio

ns a

ssoc

iate

d w

ith re

nal p

rogr

essi

on a

nd a

n in

trodu

ctio

n to

the

vario

us R

RTs

-Sta

ge IV

pat

ient

s: p

rogr

amm

e in

clud

ed d

iscu

ssio

ns o

n th

e m

x of

com

plic

atio

ns a

ssoc

iate

d w

ith C

KD, i

ndic

atio

ns o

f RRT

an

d ev

alua

tion

of v

ascu

lar o

r pe

riton

eal a

cces

s.

-Sta

ge V

pat

ient

s: m

onito

red

for t

imel

y in

itiat

ion

of R

RT, c

are

of v

ascu

lar o

r per

itone

al a

cces

s,

dial

ysis

-ass

ocia

ted

com

plic

atio

ns

and

regi

stra

tion

for i

nclu

sion

in th

e re

nal t

rans

plan

t wai

ting

list

Cus

tom

ary

care

-Sam

e gr

oup

of n

ephr

olog

ist

inst

ruct

ed

parti

cipa

nts

rega

rdin

g re

nal f

unct

ion,

ev

alua

tion

of la

b da

ta a

nd c

linic

al

indi

cato

rs o

f ch

roni

c re

nal

failu

re a

s w

ell a

s st

rate

gies

for m

x &

tx-G

ener

al p

rinci

ples

of

HD

and

PD

ex

plai

ned

whe

n pa

tient

s en

ter

stag

e IV

-All

patie

nts

prov

ided

w

ith w

ritte

n in

stru

ctio

ns.

-Com

orbi

dity

fa

ctor

s ev

alua

ted

befo

re re

ferra

l to

nurs

e sp

ecia

lizin

g in

HD

or P

D.

-Nur

sing

sta

ff pr

ovid

ed

inst

ruct

ions

for

daily

livi

ng a

nd

expl

aine

d cr

iteria

fo

r HD

and

PD

se

lect

ion

and

the

diffe

renc

e be

twee

n m

odal

ities

.

12 Mon

ths

-Mea

n fo

llow

-up

perio

d w

as

11.7

±0.9

m

onth

s.

Res

ults

:

Hos

pita

lisat

ion

- The

1-y

ear

hosp

italis

atio

n ra

te

was

low

er in

the

MPE

pat

ient

s (2

.8%

) th

an in

the

non-

MPE

pa

tient

s (1

6.4%

, P =

0.

034)

. -H

owev

er, t

he re

ason

fo

r hos

pita

lisat

ion

did

not d

iffer

sig

nific

antly

be

twee

n th

em.

Mul

tiple

in

divi

dual

se

ssio

ns

with

team

m

embe

rs

+ pa

tient

s vo

lunt

eers

71



Evid

ence

Tab

le: O

rgan

isat

iona

l (H

OSP

ITAL

ISAT

ION

)Q

uest

ion

: Wha

t are

the

orga

nisa

tiona

l iss

ues

with

rega

rds

to P

re-d

ialy

sis

Educ

atio

n Pr

ogra

mm

e fo

r adv

ance

d C

KD p

atie

nts?

Bibl

iogr

aphi

c C

itatio

nSt

udy

Type

/Met

hods

LEN

umbe

r of

Patie

nts

& Pa

tient

C

hara

cter

istic

Inte

rven

tion

Com

paris

onLe

ngth

of

Follo

w U

p O

utco

me

Mea

sure

s/Ef

fect

Siz

eG

ener

al

Com

men

ts

4. Y

eoh

HH

, Ti

quia

HS,

Ab

car A

C e

t al.

Impa

ct o

fpr

edia

lysi

s ca

re o

n cl

inic

al

outc

omes

. H

emod

ial I

nt.

2003

;7(4

):338

-34

1.

USA

Ret

rosp

ectiv

e co

hort

stud

yO

bjec

tive:

To c

ompa

re p

atie

nts

who

had

pr

e-di

alys

is e

duca

tion

prog

ram

me

with

thos

e w

ho d

id n

ot d

ue to

late

re

ferra

l or r

efus

al to

par

ticip

ate,

in

term

s of

hos

pita

lisat

ions

, em

erge

ncy

room

vis

its a

nd d

ialy

sis

acce

ss p

lace

men

t. M

etho

ds:

-Cha

rts o

f 103

pat

ient

s se

en in

cl

inic

from

199

7 to

200

0 w

ere

revi

ewed

-All

103

patie

nts

with

CKD

w

ere

enco

urag

ed to

atte

nd th

e ed

ucat

iona

l cla

sses

. -D

ata

on 6

8 pa

tient

s w

ho e

lect

ed

to p

artic

ipat

e in

the

pre-

dial

ysis

cl

asse

s an

d 35

pat

ient

s w

ho

deci

ded

not t

o pa

rtici

pate

in th

e cl

asse

s in

spi

te o

f enc

oura

gem

ent

to d

o so

or w

ere

refe

rred

late

and

re

quire

d im

med

iate

dia

lysi

s w

ere

revi

ewed

-Dat

a fro

m p

erio

d be

ginn

ing

10

days

bef

ore

the

initi

atio

n of

dia

lysi

s to

90

days

afte

r the

firs

t dia

lysi

s,

for a

tota

l per

iod

of 1

00 d

ays

was

ob

tain

ed.

-Thi

s pe

riod

capt

ures

ho

spita

lisat

ion

for i

nitia

tion

of

dial

ysis

. -D

ata

for e

ach

varia

ble

wer

e co

mpa

red

for p

atie

nts

who

at

tend

ed th

e pr

e-di

alys

is c

lass

and

th

ose

who

did

not

II-2

68 p

atie

nts

parti

cipa

ted

in p

re-d

ialy

sis

educ

atio

n pr

ogra

mm

e an

d 35

pa

tient

s w

ho

did

not

Mea

n ag

e fo

r in

terv

entio

n gr

oup:

60.

3 ye

ars

old

Mea

n ag

e fo

r co

ntro

l gro

up:

54.9

yea

rs o

ld(P

=0.0

98)

Pre-

dial

ysis

edu

catio

n pr

ogra

mm

e-T

eam

invo

lved

in

educ

atio

n an

d ca

re

of p

atie

nts

cons

ists

of

nurs

es, n

ephr

olog

ists

, di

etiti

ans,

soc

ial

wor

kers

, cas

e m

anag

ers,

and

ph

arm

acis

ts-E

duca

tiona

l pro

gram

co

mpr

ised

of 2

se

para

te c

lass

es-K

idne

y C

lass

for

patie

nts

mild

to

mod

erat

e re

nal

impa

irmen

t -a

nd C

hoic

es C

lass

: pr

e-di

alys

is e

duca

tion

for p

atie

nts

with

m

oder

ate

to s

ever

e re

nal d

isea

se o

r abo

ut

3 to

6 m

onth

s be

fore

di

alys

is w

ill be

nee

ded.

-K

idne

y C

lass

: ge

nera

l inf

orm

atio

n ab

out k

idne

y di

seas

e,

caus

es o

f ren

al fa

ilure

, an

d its

man

ifest

atio

n-C

hoic

es C

lass

: to

fam

iliaris

e pa

tient

w

ith o

ptio

ns in

RRT

in

clud

ing

HD

, PD

and

re

nal t

rans

plan

tatio

n-O

nce

the

patie

nts

atte

nded

the

clas

ses,

th

ey w

ere

follo

wed

by

all t

he m

embe

rs o

f the

M

DT

in a

coo

rdin

ated

m

anne

r.

No

pre-

dial

ysis

ed

ucat

ion

prog

ram

me

10 d

ays

befo

re

initi

atio

n an

d 90

da

ys p

ost

dial

ysis

Res

ults

:D

ialy

sis

acce

ss p

lace

men

t-N

eces

sity

for u

se o

f tem

pora

ry c

athe

ters

was

se

en in

13

of 3

5 pa

tient

s (3

7.0%

) in

the

grou

p w

ithou

t pre

-dia

lysi

s ed

ucat

ion

vs. 3

of 6

8 (4

.4%

) in

the

patie

nts

who

atte

nded

edu

catio

n cl

asse

s (p

<0.0

01)

-Inci

denc

e of

AV

graf

t pla

cem

ent w

as h

ighe

r in

patie

nts

with

out p

re-d

ialy

sis

educ

atio

n (5

1% v

s.

18%

, p<0

.001

)-A

V fis

tula

pla

cem

ent r

ate

was

low

er in

pat

ient

s w

ithou

t pre

-dia

lysi

s ed

ucat

ion

(34%

vs.

51%

); bu

t w

as n

ot s

tatis

tical

ly s

igni

fican

t.-In

cide

nce

of P

D c

athe

ter p

lace

men

t was

hig

her i

n th

e ed

ucat

ed g

roup

(3

1% v

s. 1

1.4%

, p=0

.03)

. H

ospi

talis

atio

ns a

nd e

mer

genc

y ro

om v

isits

-Tw

ice

as m

any

emer

genc

y ro

om v

isits

for

patie

nts

with

out e

duca

tion

as fo

r tho

se w

ith

educ

atio

n (1

.11

vs. 0

.57)

per

pat

ient

(P=0

.035

)-C

ause

s of

hos

pita

lizat

ion

for b

oth

grou

ps in

clud

ed:

v

fluid

ove

rload

,

v

prob

lem

s re

late

d to

vas

cula

r acc

ess,

v

gast

roin

test

inal

ble

edin

g,

v

infe

ctio

ns

v

and

met

abol

ic c

ause

s.

-Ave

rage

leng

th o

f hos

pita

l sta

y pe

r pat

ient

for

patie

nts

with

no

pre-

dial

ysis

edu

catio

n w

as o

ver

seve

n tim

es h

ighe

r (9

.9 v

s. 1

.4 d

ays

per p

atie

nt) (

P<0.

001)

Aut

hors

con

clus

ion:

Patie

nts

who

par

ticip

ated

in a

mul

tidis

cipl

inar

y pr

e-di

alys

is e

duca

tion

prog

ram

me

had

few

er

com

plic

atio

ns, E

R v

isits

, and

hos

pita

lizat

ions

. The

y al

so h

ad fe

wer

tem

pora

ry c

athe

ter p

lace

men

ts,

shor

ter h

ospi

tal s

tays

, and

redu

ced

cost

s as

soci

ated

with

initi

al d

ialy

sis.

Educ

atio

n by

cla

sses

72


Bibl

iogr

aphi

c C

itatio

nSt

udy

Type

/Met

hods

LEN

umbe

r of

Patie

nts

& Pa

tient

C

hara

cter

istic

Inte

rven

tion

Com

paris

onLe

ngth

of

Follo

w U

p O

utco

me

Mea

sure

s/Ef

fect

Siz

eG

ener

al

Com

men

ts

5. Y

u YJ

, Wu

IW,

Hua

ng C

Y et

al.

Mul

tidis

cipl

inar

y pr

edia

lysi

s ed

ucat

ion

redu

ced

the

inpa

tient

an

d to

tal m

edic

alco

sts

of th

e fir

st 6

m

onth

s of

dia

lysi

s in

in

cide

nt h

emod

ialy

sis

patie

nts.

PLo

SO

ne.

2014

;9(1

1):e

1128

20.

Taiw

an

Ran

dom

ised

con

trolle

d tri

al w

ith c

ost-a

naly

sis

Obj

ectiv

e:To

ana

lyse

the

med

ical

exp

endi

ture

an

d ut

ilisat

ion

incu

rred

durin

g th

e fir

st 6

m

onth

s of

dia

lysi

s in

itiat

ion

in 4

25 in

cide

nt

haem

odia

lysi

s pa

tient

s w

ho w

ere

rand

omis

ed

into

mul

tidis

cipl

inar

y pr

e-di

alys

is e

duca

tion

(MPE

) and

non

-MPE

gro

ups

befo

re re

achi

ng

ESR

D.

Met

hods

:-A

tota

l of 2

280

patie

nts

wer

e en

rolle

d in

the

stud

y an

d w

ere

rand

omly

div

ided

into

the

MPE

gro

up a

nd th

e no

n-M

PE g

roup

by

usin

g a

rand

om ta

ble

at s

tudy

ent

ry.

-445

pat

ient

s re

ache

d ES

RD

nee

ding

ha

emod

ialy

sis

afte

r a m

ean

follo

w-u

p of

33

±2.6

mon

ths:

232

patie

nts

in th

e M

PE g

roup

21

3 pa

tient

s in

the

non-

MPE

gro

up-P

rogr

am c

onsi

sted

of a

n in

tegr

ated

cou

rse

invo

lvin

g in

divi

dual

lect

ures

on

rena

l hea

lth,

deliv

ered

by

the

case

-man

agem

ent n

urse

-Lec

ture

s fo

cuse

d on

nut

ritio

n, li

fest

yle,

ne

phro

toxi

n av

oida

nce,

die

tary

prin

cipl

es, a

nd

phar

mac

olog

ical

regi

men

s.

-Cas

e-m

anag

emen

t nur

se c

onta

cted

the

patie

nts

to e

nsur

e tim

ely

follo

w-u

p-F

or s

tage

IV C

KD p

atie

nts,

the

prog

ram

in

clud

ed d

iscu

ssio

ns o

n th

e m

anag

emen

t of

com

plic

atio

ns a

ssoc

iate

d w

ith C

KD,

indi

catio

ns o

f ren

al re

plac

emen

t the

rapy

, an

d th

e ev

alua

tion

of v

ascu

lar o

r per

itone

al

acce

ss.

-For

sta

ge V

CKD

wer

e m

onito

red

for t

imel

y in

itiat

ion

of re

nal r

epla

cem

ent t

hera

pies

, the

ca

re o

f vas

cula

r or p

erito

neal

acc

ess,

dia

lysi

s-as

soci

ated

com

plic

atio

ns, a

nd re

gist

ratio

n fo

r in

clus

ion

in th

e re

nal t

rans

plan

tatio

n w

aitin

g lis

t. -A

ll pa

tient

s re

ceiv

ed d

ieta

ry c

ouns

ellin

g bi

annu

ally

from

a d

ietit

ian.

-In

add

ition

, cas

e-m

anag

emen

t nur

se o

ften

cont

acte

d th

e pa

rtici

pant

s by

tele

phon

e to

en

cour

age

them

to in

form

thei

r nep

hrol

ogis

ts

of th

eir s

ympt

oms

and

to re

info

rce

the

impo

rtanc

e of

med

ical

vis

its.

-The

MPE

pro

gram

was

dis

cont

inue

d on

ce

rena

l rep

lace

men

t the

rapi

es w

ere

initi

ate

II-1

445

adva

nced

CKD

pa

tient

s: v

232

patie

nts

in M

PE

grou

p

v

213

patie

nts

in n

on-

MPE

gr

oup

-Mea

n ag

e of

pa

tient

s w

as

63.8

±13.

2 ye

ars,

and

22

1 (4

9.7%

) of t

hem

w

ere

men

-Mea

n eG

FR 7

.49

± 3.

1 M

PE g

roup

and

m

ean

eGFR

7.8

7±

3.6

in th

e no

n-M

PE

grou

p

Mul

tidis

cipl

inar

y pr

e-di

alys

is

educ

atio

n (M

PE)

-MPE

pro

gram

co

mpr

ised

a

nurs

e fo

r cas

e m

anag

emen

t, so

cial

wor

kers

, di

etiti

ans,

ha

emod

ialy

sis,

pe

riton

eal

dial

ysis

pat

ient

vo

lunt

eers

and

10

neph

rolo

gist

s

Non

-MPE

-S

ame

grou

p of

ne

phro

logi

sts

inst

ruct

ed

patie

nts

abou

t re

nal f

unct

ion,

ev

alua

tion

of

labo

rato

ry d

ata,

an

d cl

inic

al

indi

cato

rs o

f ch

roni

c re

nal

failu

re, a

nd

stra

tegi

es fo

r its

mx

and

tx-G

ener

al

prin

cipl

es o

f H

D a

nd P

D

expl

aine

d w

hen

patie

nts

at

Stag

e 4

CKD

6 m

onth

s of

dia

lysi

s in

itiat

ion

Res

ults

:H

ospi

talis

atio

n an

d va

scul

ar a

cces

s re

late

d su

rger

ies

-MPE

pat

ient

s ha

d si

gnifi

cant

ly fe

wer

and

sho

rter

le

ngth

s of

hos

pita

lisat

ion

(med

ian

(IQR

) 0 (1

5) v

s. 8

(27)

day

s, p

<0.0

01]

than

non

-MPE

pat

ient

s).

-Car

diov

ascu

lar d

isea

se (i

nclu

ding

unc

ontro

lled

hype

rtens

ion,

cor

onar

y ar

tery

dis

ease

, st

roke

, hea

rt fa

ilure

, and

per

iphe

ral a

rtery

oc

clus

ive

dise

ase)

was

the

mai

n ca

use

of fi

rst

hosp

italiz

atio

n in

all

patie

nts.

-Eig

hty-

eigh

t (37

.9%

) pat

ient

s in

the

MPE

gro

up

had

at le

ast o

ne h

ospi

talis

atio

n, c

ompa

red

with

12

7 pa

tient

s (5

9.6%

) in

the

non-

MPE

gro

up

(p<0

.001

).-P

artic

ipat

ion

in M

PE p

rogr

am re

duce

d ca

rdio

vasc

ular

hos

pita

lisat

ion

in fi

rst 6

m

onth

s po

st d

ialy

sis

(18.

53%

vs.

29.

58%

, p=

0.00

7).

-MPE

gro

up w

ere

mor

e lik

ely

to h

ave

few

er

vasc

ular

acc

ess

rela

ted

surg

erie

s du

ring

the

first

adm

issi

on [3

5 pa

tient

s (1

5.09

%) v

s. 5

5 (2

5.82

%),

p=0.

005]

.A

utho

rs c

oncl

usio

n:Pa

rtici

patio

n of

mul

tidis

cipl

inar

y ed

ucat

ion

in

pre-

dial

ysis

per

iod

was

inde

pend

ently

ass

ocia

ted

with

redu

ctio

n in

the

inpa

tient

and

tota

l med

ical

ex

pend

iture

s of

the

first

6 m

onth

s po

st-d

ialy

sis

owin

g to

dec

reas

ed in

patie

nt s

ervi

ce u

tiliz

atio

n se

cond

ary

to c

ardi

ovas

cula

r cau

ses

and

vasc

ular

ac

cess

–rel

ated

sur

gerie

s.

Sing

le-

cent

re s

tudy

Educ

atio

n by

indi

vidu

al

sess

ions

with

te

am

Evid

ence

Tab

le :

Org

anis

atio

nal (

HO

SPIT

ALIS

ATIO

N)

Que

stio

n : W

hat a

re th

e or

gani

satio

nal i

ssue

s w

ith re

gard

s to

Pre

-dia

lysi

s Ed

ucat

ion

Prog

ram

me

for a

dvan

ced

CKD

pat

ient

s?

73



Evid

ence

Tab

le :

Org

anis

atio

nal (

HO

SPIT

ALIS

ATIO

N)

Que

stio

n :

Wha

t are

the

orga

nisa

tiona

l iss

ues

with

rega

rds

to P

re-d

ialy

sis

Educ

atio

n Pr

ogra

mm

e fo

r adv

ance

d C

KD p

atie

nts?

Bibl

iogr

aphi

cC

itatio

nSt

udy

Type

/Met

hods

LEN

umbe

r of

Patie

nts

& Pa

tient

C

hara

cter

istic

Inte

rven

tion

Com

paris

onLe

ngth

of

Follo

w U

p O

utco

me

Mea

sure

s/Ef

fect

Siz

eG

ener

al

Com

men

ts

6. W

ei S

Y, C

hang

YY

, Mau

LW

et a

l.C

hron

ic k

idne

y di

seas

e ca

re

prog

ram

impr

oves

qu

ality

of p

re-e

nd-

stag

e re

nal

dise

ase

care

and

re

duce

s m

edic

al

cost

s. N

ephr

olog

y (C

arlto

n).

2010

;15(

1):1

08-

115.

Taiw

an

Ret

rosp

ectiv

e co

hort

stud

yw

ith c

ost-a

naly

sis

Obj

ectiv

e:

To e

valu

ate

the

effe

ctiv

enes

s of

CKD

car

e pr

ogra

mm

e on

pre

-end

-sta

ge

rena

l dis

ease

(ESR

D) c

are

Met

hod:

-Tot

al o

f 140

inci

dent

ESR

D p

atie

nts,

who

sta

rted

HD

in th

e pe

riod

from

Au

gust

200

4 to

Jul

y 20

05 fr

om th

e tw

o st

udy

hosp

itals

wer

e re

trosp

ectiv

ely

revi

ewed

-Stu

dy s

ubje

cts

divi

ded

into

:v

‘CK

D C

are

Gro

up’

(71

inci

dent

HD

pat

ient

s w

ho re

ceiv

ed th

e C

KD c

are

prog

ram

me

inte

rven

tion

for a

t lea

st 6

mon

ths

befo

re

initi

atio

n of

HD

), v

‘Nep

hrol

ogis

t Car

e G

roup

’ (69

inci

dent

HD

pat

ient

s w

ho

wer

e ca

red

for b

y ne

phro

logi

sts

alon

e fo

r at l

east

6 m

onth

s be

fore

initi

atio

n of

dia

lysi

s)

-CKD

Car

e Pr

ogra

mm

e in

clud

ed n

ephr

olog

ists

, ren

al n

urse

s an

d di

etic

ians

as

the

core

mem

bers

of a

mul

tidis

cipl

inar

y te

am re

spon

sibl

e fo

r car

ing

for

patie

nts

at d

iffer

ent C

KD s

tage

s.

-CKD

pat

ient

s, in

vite

d to

join

the

care

pro

gram

by

the

neph

rolo

gist

, wer

e re

ferre

d to

wel

l-tra

ined

rena

l nur

ses

and

diet

icia

ns.

-Diff

eren

t goa

ls a

nd e

duca

tion

cont

ents

, acc

ordi

ng to

sta

ges

of C

KD

and

pre-

set c

linic

al p

roto

cols

, wer

e pl

anne

d an

d de

liver

ed s

yste

mat

ical

ly

appr

oxim

atel

y 30

–45

min

at e

ach

visi

t. -E

very

pat

ient

rece

ived

follo

w-u

p vi

sits

with

clin

ical

eva

luat

ion,

labo

rato

ry

exam

inat

ions

, nur

sing

and

die

tary

edu

catio

n, w

hich

was

take

n ev

ery

3 m

onth

s fo

r CKD

sta

ges

3 an

d 4,

and

eve

ry 1

–2 m

onth

s fo

r sta

ge 5

pa

tient

s.-P

rimar

y go

als

incl

uded

;v

slow

ing

dow

n th

e de

terio

ratio

n of

rena

l fun

ctio

n,

v

early

pre

para

tions

for d

ialy

sis,

v

redu

cing

of r

isk

of c

ompl

icat

ions

,v

and

ensu

ring

the

proc

ess

of e

nter

ing

dial

ysis

sm

ooth

ly a

nd

safe

ly.

- Nep

hrol

ogis

t Car

e G

roup

wer

e al

l tre

ated

by

neph

rolo

gist

s fro

m th

e sa

me

depa

rtmen

t, bu

t the

y di

d no

t rec

eive

nur

sing

edu

catio

n an

d di

etar

y co

unse

lling

by C

KD n

urse

s an

d di

etic

ians

. -P

rinci

ple

of C

KD c

are,

incl

udin

g m

edic

atio

ns a

nd e

arly

pre

para

tion

of

vasc

ular

acc

ess,

wer

e ro

utin

ely

deliv

ered

to p

atie

nts

by th

e ne

phro

logi

sts

-End

-poi

nt o

f obs

erva

tion

was

dia

lysi

s in

itiat

ion.

-Q

ualit

y in

dica

tors

for e

valu

atio

n in

clud

ed:

v

Stat

us o

f rec

ombi

nant

hum

an e

ryth

ropo

ietin

(rH

uEPO

) tre

atm

ent,

v

Vasc

ular

acc

ess

prep

arat

ion

v

Hos

pita

lisat

ion

for i

nitia

tion

of

d

ialy

sis

whi

ch w

ere

com

pare

d be

twee

n tw

o gr

oups

II-2

140

inci

dent

ES

RD

pat

ient

s w

ho s

tarte

d di

alys

is a

nd

divi

ded

into

:-C

KD C

are

Gro

up

(71

patie

nts)

-Nep

hrol

ogis

t C

are

Gro

up

(69

patie

nts)

-Mea

n eG

FR, m

L/m

in p

er 1

.73

m2

3.8

± 1.

3 in

CKD

C

are

Gro

up,

3.7

± 1.

5 in

Nep

hrol

ogis

t ca

re g

roup

CKD

car

e pr

ogra

mm

e(n

=71)

Nep

hrol

ogis

t Car

e G

roup

(n=6

9)

6 m

onth

s be

fore

dia

lysi

s an

d at

dia

lysi

s in

itiat

ion

Res

ults

:Q

ualit

y of

pre

-ESR

D c

are

Prep

arat

ion

at d

ialy

sis

initi

atio

n: E

PO tr

eatm

ent

-No

sign

ifica

nt d

iffer

ence

on

perc

enta

ges

of p

atie

nts

who

re

ceiv

ed rH

uEPO

trea

tmen

t at i

nitia

tion

of H

D a

nd th

e av

erag

e m

onth

ly d

osag

e of

rHuE

POPr

epar

atio

ns a

t dia

lysi

s in

itiat

ion:

Vas

cula

r acc

ess

-Vas

cula

r acc

ess

had

been

cre

ated

bef

ore

HD

in 5

7.7%

of

pat

ient

s in

the

CKD

Car

e G

roup

vs.

onl

y 37

.7%

of t

he

Nep

hrol

ogis

t Car

e G

roup

(P =

0.0

17).

-Per

cent

age

of p

atie

nts

who

sta

rted

HD

with

cre

ated

va

scul

ar a

cces

s w

ithou

t the

inse

rtion

of d

oubl

e lu

men

ca

thet

er w

as 5

0.7%

in th

e C

KD C

are

Gro

up, v

s. 2

9.0%

in

the

Nep

hrol

ogis

t Car

e G

roup

(P

= 0

.009

)Pr

epar

atio

ns a

t dia

lysi

s in

itiat

ion:

Hos

pita

lisat

ion

-Per

cent

age

of p

atie

nts

who

wer

e no

t hos

pita

lised

for

initi

atio

n of

HD

was

40.

8% in

CKD

Car

e G

roup

, vs.

18.

8%

in th

e N

ephr

olog

ist C

are

Gro

up (P

< 0

.005

). -M

ost p

atie

nts

in N

ephr

olog

ist C

are

Gro

up (8

1.2%

) had

th

eir fi

rst H

D th

roug

h in

patie

nt H

D.

Freq

uenc

y of

ser

vice

s ut

ilisat

ion

Perio

d of

‘6 m

onth

s be

fore

dia

lysi

s’-M

ore

frequ

ent o

utpa

tient

vis

its in

CKD

Car

e G

roup

(9

.9 ±

5.5

vs

5.5

± 5.

5 P<

0.00

1), b

ut th

e fre

quen

cy o

f ho

spita

lisat

ion

and

leng

th o

f sta

y ha

d no

diff

eren

ce w

ith

Nep

hrol

ogis

t Car

e G

roup

.Pe

riod

of ‘a

t dia

lysi

s in

itiat

ion’

-Low

er p

erce

ntag

e of

hos

pita

lisat

ion

for i

nitia

tion

of

dial

ysis

in th

e C

KD C

are

Gro

up (5

9.2%

vs

81.2

%, P

= 0.

005)

, -L

engt

h of

sta

y in

hos

pita

l muc

h sh

orte

r for

CKD

Car

e G

roup

.(6

.6da

ys ±

16.

2 vs

. 16.

2day

s ±

16.2

, P

<0.0

01)

Aut

hors

con

clus

ion:

CKD

car

e pr

ogra

mm

e su

cces

sful

ly h

elps

pre

-ESR

D

patie

nts

to p

roce

ed in

to d

ialy

sis

initi

atio

n w

ith b

ette

r pr

epar

edne

ss, w

hich

redu

ces

the

prob

abilit

y of

em

erge

ncy

dial

ysis

thro

ugh

hosp

italis

atio

n an

d sa

ves

heat

h do

llars

from

CKD

to E

SRD

Educ

atio

n by

mul

tiple

in

divi

dual

se

ssio

ns

74


Evid

ence

Tab

le :

Org

anis

atio

nal (

CO

MPO

NEN

TS O

F PR

OG

RAM

ME)

Que

stio

n : W

hat a

re th

e co

mpo

nent

s of

Pre

-dia

lysi

s Ed

ucat

ion

Prog

ram

me

for a

dvan

ced

CKD

pat

ient

s?Bi

blio

grap

hic

Cita

tion

Stud

yTy

pe/M

etho

dsLE

Num

ber o

f Pat

ient

s &

Patie

nt C

hara

cter

istic

Inte

rven

tion

Com

paris

onLe

ngth

of

Follo

w U

p O

utco

me

Mea

sure

s/Ef

fect

Siz

eG

ener

al

Com

men

ts

1. V

an d

en

Bosc

h J,

War

ren

DS,

Rut

herfo

rd

PA. R

evie

w

of p

redi

alys

is

educ

atio

npr

ogra

ms:

a n

eed

for s

tand

ardi

zatio

n.

Patie

nt P

refe

r Ad

here

nce.

20

15;9

:127

9-12

91.

Syst

emat

ic re

view

Obj

ectiv

e:

To re

view

evi

denc

e on

effe

ctiv

e co

mpo

nent

s of

pre

-dia

lysi

s ed

ucat

ion

prog

ram

mes

as

rela

ted

to m

odal

ity

choi

ce a

nd s

elec

ted

clin

ical

out

com

es.

Met

hod:

-Sys

tem

atic

sea

rch

was

per

form

ed o

n Pu

bMed

MED

LIN

E, C

ochr

ane

Libr

ary,

and

Ovi

d (fr

om J

anua

ry 1

, 199

5 to

D

ecem

ber 3

1, 2

013)

-In

clus

ion

crite

ria a

pplie

d:

v

Adul

ts o

nly

v

Pre-

dial

ysis

edu

catio

n fo

r C

KD p

atie

nts

stag

e III

, IV

, and

Vv

Plan

ned

star

t pat

ient

s,

unpl

anne

d st

art p

atie

nts,

an

d pa

tient

s on

dia

lysi

s,

ie, i

ncid

ent a

nd p

reva

lent

pa

tient

s.v

Det

aile

d de

scrip

tion

of

prog

ram

me

v

Mul

tiple

ses

sion

sv

Mul

tidis

cipl

inar

y pr

ogra

mm

e in

volv

ing

phys

icia

ns, n

urse

s,

diet

icia

ns, e

tc.

-Out

com

es in

clud

ed:

v

Dia

lysi

s m

odal

ity c

hoic

e an

d th

e nu

mbe

rs o

f pa

tient

s ch

oosi

ng e

ach

mod

ality

v

Any

clin

ical

out

com

e as

soci

ated

with

pre

-di

alys

is e

duca

tion

v

Hea

lth-re

late

d qu

ality

of

life

v

Mea

sure

s as

soci

ated

with

pa

tient

cho

ice

v

Fina

ncia

l im

pact

of

patie

nts

choo

sing

mor

e ho

me

ther

apie

s v

Patie

nt s

atis

fact

ion

-Lite

ratu

re a

lso

revi

ewed

for a

ny

info

rmat

ion

on p

roce

sses

, pat

hway

s,

and

orga

niza

tion

of th

e pr

e-di

alys

is

educ

atio

n pr

ogra

mm

es

I29

rele

vant

stu

dies

:19

qua

si-e

xper

imen

tal

desi

gn10

nar

rativ

e re

view

s

-19

stud

ies

wer

e an

alys

ed

for e

ffect

ive

com

pone

nts

of p

re-d

ialy

sis

educ

atio

n pr

ogra

mm

e

-Des

crip

tions

of

the

educ

atio

nal

proc

ess

varie

d an

d in

clud

ed in

divi

dual

an

d gr

oup

educ

atio

n,

mul

tidis

cipl

inar

y in

terv

entio

n, a

nd v

aryi

ng

dura

tion

and

frequ

ency

of

sess

ions

.

Pre-

dial

ysis

edu

catio

n pr

ogra

mm

esR

esul

ts:

Com

pone

nts

of p

re-d

ialy

sis

educ

atio

n pr

ogra

mm

es

Mul

tidis

cipl

inar

y ed

ucat

ion

-Pre

-dia

lysi

s ca

re is

del

iver

ed b

y a

mul

tidis

cipl

inar

y te

am in

clud

ing

a ne

phro

logi

st, a

nur

se, a

die

ticia

n, a

nd a

soc

ial w

orke

r.- T

he te

am c

an a

lso

incl

ude:

v

a ph

arm

acis

t who

exp

lain

s in

form

atio

n on

med

icin

es n

eeds

v

a ps

ycho

logi

st e

xper

t, w

hich

cou

ld b

e a

spec

ialis

ed n

urse

for

emot

iona

l sup

port

whe

n ne

eded

;

v

a ca

se m

anag

er;

v

repr

esen

tativ

es fr

om th

e lo

cal p

atie

nt k

idne

y su

ppor

t gro

up;

v

and

othe

r pat

ient

s es

tabl

ishe

d on

mai

nten

ance

dia

lysi

s

-7 a

rticl

es re

triev

ed fr

om th

e sc

ient

ific

liter

atur

e re

view

des

crib

ed

mul

tidis

cipl

inar

y ed

ucat

ion

prog

ram

whi

ch c

onsi

sts

of m

ultip

le e

duca

tion

sess

ions

whe

re p

atie

nts

wer

e ed

ucat

ed b

y th

ree

or m

ore

heal

th c

are

prof

essi

onal

s su

ch a

s ne

phro

logi

st, n

urse

, die

titia

n, s

ocia

l wor

ker,

hom

e-di

alys

is c

oord

inat

or, p

harm

acis

t, te

chni

cian

, or b

y ot

her d

ialy

sis

patie

nts

Del

iver

y st

yle

-Edu

catio

n de

liver

y st

yle

can

eith

er b

e on

e-on

-one

ses

sion

s or

cla

ss ro

om

teac

hing

sty

le, b

ut a

mix

of o

ne-o

n-on

e an

d gr

oup

sess

ions

wer

e ad

voca

ted

-Edu

catio

nal p

rogr

ams

shou

ld c

onta

in in

divi

dual

ised

one

-on-

one

coun

sellin

g se

ssio

ns w

ith a

mem

ber/m

embe

rs o

f mul

tidis

cipl

inar

y te

am.

-Thi

s ca

n be

a p

hysi

cian

, nep

hrol

ogis

t, nu

rse,

die

ticia

n, s

ocia

l wor

ker,

etc.

-In a

dditi

on to

sm

all g

roup

dis

cuss

ions

, pee

r cou

nsel

ling

and

prob

lem

-sol

ving

or

“bra

inst

orm

ing”

ses

sion

s ha

ve b

een

desc

ribed

whe

rein

pat

ient

s di

scus

s tre

atm

ent m

odal

ities

, bar

riers

and

ben

efits

, and

trou

bles

hoot

ing

of p

ossi

ble

prob

lem

s w

ith o

ther

pat

ient

s (o

r fac

ilitat

ors)

.-G

roup

ses

sion

s ca

n ha

ve a

var

iety

of f

orm

ats

such

as

grou

p le

ctur

es,

inte

ract

ive

wor

ksho

ps, o

r ope

n fo

rum

ses

sion

s.

Freq

uenc

y an

d du

ratio

n -N

umbe

r of s

essi

ons

and

dura

tion

per s

essi

on v

arie

s by

edu

catio

nal p

rogr

am.

-The

re w

ere

repo

rts o

f 6 in

divi

dual

ses

sion

s of

1 h

our,

4 se

ssio

ns, 1

nig

ht a

w

eek

for 2

hou

rs; o

r at l

east

4 to

5 in

terv

iew

s

Tim

ing

-An

estim

ated

glo

mer

ular

filtr

atio

n ra

te o

f les

s th

an 3

0 m

L/m

in (s

tage

IV C

KD)

has

been

repo

rted

as id

eal f

or re

ferra

l to

CKD

clin

ic.

-Oth

ers

reco

mm

end

that

pat

ient

s sh

ould

be

refe

rred

as e

arly

as

poss

ible

to

rena

l edu

catio

n (>

6 m

onth

s).

Aut

hors

con

clus

ion:

Ther

e is

a n

eed

for a

sta

ndar

dize

d ap

proa

ch b

uilt

on b

est e

vide

nce

from

C

KD a

nd a

lso

from

oth

er c

linic

al c

ondi

tions

and

exi

stin

g kn

owle

dge

on th

e ev

alua

tion

of c

ompl

ex in

terv

entio

ns to

ens

ure

form

al e

valu

atio

n of

pre

-di

alys

is e

duca

tion

prog

ram

s, a

nd th

eir e

ffect

s on

clin

ical

out

com

es a

nd

mod

ality

cho

ice.

Mos

t stu

dies

w

ithou

t con

trol

grou

p

75



Evid

ence

Tab

le :

Org

anis

atio

nal (

CO

MPO

NEN

TS O

F PR

OG

RAM

ME)

Que

stio

n : W

hat a

re th

e or

gani

satio

nal i

ssue

s w

ith re

gard

s to

Pre

-dia

lysi

s Ed

ucat

ion

Prog

ram

me

for a

dvan

ced

CKD

pat

ient

s?Bi

blio

grap

hic

Cita

tion

Stud

yTy

pe/M

etho

dsLE

Num

ber o

f Pat

ient

s &

Patie

nt C

hara

cter

istic

Inte

rven

tion

Com

paris

onLe

ngth

of

Follo

w U

p O

utco

me

Mea

sure

s/Ef

fect

Siz

eG

ener

al C

omm

ents

2. P

rieto

-Vel

asco

M

, Isn

ard

Bagn

is C

, D

ean

J et

al.

Pred

ialy

sis

educ

atio

nin

pra

ctic

e: a

qu

estio

nnai

re

surv

ey o

f cen

tres

with

est

ablis

hed

prog

ram

mes

. BM

CR

es N

otes

. 20

14;7

:730

.

EU c

ount

ries

Cro

ss-s

ectio

nal s

tudy

Obj

ectiv

e:To

hel

p ad

dres

s kn

owle

dge

gap:

a) h

ow is

rena

l re

plac

emen

t the

rapy

op

tion

educ

atio

n (R

RTO

E) b

eing

run?

Met

hods

:-A

n ex

pert

mee

ting

was

hel

d in

Mar

ch

2013

to fo

rmul

ate

a po

sitio

n st

atem

ent o

n op

timal

way

s to

run

RRT

OE.

-E

xper

ts w

ere

sele

cted

fro

m u

nits

that

had

ex

tens

ive

expe

rienc

e in

RRT

OE

or w

ere

perfo

rmin

g re

sear

ch in

th

is fi

eld.

-Bef

ore

the

mee

ting,

ex

perts

com

plet

ed a

pi

lot q

uest

ionn

aire

on

RRT

OE

in th

eir o

wn

units

.

II-3

Four

nur

ses,

5

neph

rolo

gist

s an

d 1

clin

ical

psy

chol

ogis

t

(9 re

nal u

nits

; 6 E

U

coun

tries

) par

ticip

ated

.

-2 u

nits

eac

h in

UK,

Sw

eden

, Spa

in-3

uni

ts in

Fra

nce,

Be

lgiu

m, I

taly

Ren

al re

plac

emen

t th

erap

y op

tion

educ

atio

n (R

RTO

E)

Res

ults

:St

aff i

nvol

ved

-Nur

ses

wer

e al

mos

t alw

ays

resp

onsi

ble

for o

rgan

isin

g R

RTO

E. (8

/9 u

nits

)-N

ephr

olog

ists

spe

nt 7

.5%

(med

ian)

of t

heir

time

on R

RTO

Ev

Nep

hrol

ogis

ts a

lso

invo

lved

in R

RTO

E pr

ogra

mm

e (7

units

),v

diet

icia

ns (5

uni

ts)

v

psyc

holo

gist

s (4

uni

ts),

v

soci

al w

orke

rs (3

uni

ts),

v

phys

ioth

erap

ist (

1uni

t),v

occu

patio

nal t

hera

pist

(1un

it)v

phar

mac

ist (

1uni

t)

-All

staf

f adm

inis

terin

g th

e pr

ogra

mm

e ha

d ba

ckgr

ound

in g

ener

al o

r nep

hrol

ogy

nurs

ing

Star

ting

RRT

OE

-Edu

catio

n fo

r the

pat

ient

and

fam

ily b

egan

sev

eral

mon

ths

befo

re d

ialy

sis

or a

ccor

ding

to

dise

ase

prog

ress

ion

-RRT

OE

parti

cipa

nts

incl

uded

:v

patie

nts

with

CKD

sta

ge IV

or V

(9

uni

ts),

v

patie

nts

requ

iring

a c

hang

e in

RRT

trea

tmen

t (8

units

),v

fam

ily m

embe

rs o

f pat

ient

s (9

uni

ts)

Con

tent

and

stru

ctur

e-K

ey to

pics

suc

h as

the

‘impa

ct o

f the

dis

ease

’ wer

e co

vere

d by

eve

ry u

nit,

but o

nly

a fe

w

units

des

crib

ed a

ll di

alys

is m

odal

ities

. -M

ost R

RT p

atie

nts

visi

t in

cent

re H

D u

nit (

8/9

units

), pa

tient

s vi

sit h

ome

dial

ysis

nur

se to

as

sess

sui

tabi

lity

(7/9

uni

ts)

-Hal

f of u

nits

hav

e fo

rmal

mee

ting

with

‘exp

ert p

atie

nt’ a

s pa

rt of

RRT

OE

prog

ram

me

-Gro

up e

duca

tion

sess

ions

wer

e us

ed in

3/9

uni

ts.

Dec

isio

n-m

akin

g-M

ost h

ave

form

al d

ecis

ion-

mak

ing

proc

ess

with

writ

ten

supp

ort m

ater

ials

in p

lace

(7/9

uni

ts)

with

bot

h nu

rses

and

nep

hrol

ogis

ts

Mat

eria

ls-M

ater

ials

cam

e in

a w

ide

varie

ty o

f for

ms

and

from

a w

ide

rang

e of

sou

rces

-Boo

klet

s w

ere

used

in a

ll un

its, o

nlin

e m

ater

ials

and

DVD

s w

ere

used

in h

alf o

f uni

ts

Qua

lity

assu

ranc

e m

easu

res

-Mos

t wid

ely

used

(6/9

uni

ts);

v

patie

nt s

atis

fact

ion,

v

num

ber o

f pat

ient

s co

mpl

etin

g th

e pr

ogra

mm

e,

v

linki

ng a

ttend

ance

/com

plet

ion

of p

rogr

amm

e to

clin

ical

follo

w u

p,

v

and

regu

larly

upd

atin

g m

ater

ials

-Mos

t wid

ely

agre

ed u

pon

fact

ors

perc

eive

d to

be

impo

rtant

wer

e na

tiona

l/loc

al g

uide

lines

m

anda

ting

RRT

OE

prog

ram

me

and

the

clin

ical

lead

ersh

ip in

the

rena

l uni

t (ea

ch 6

uni

ts)

Aut

hors

con

clus

ion:

Th

ere

wer

e su

bsta

ntia

l var

iatio

ns in

how

RRT

OE

is ru

n be

twee

n th

e un

its.

76


Evid

ence

Tab

le :

Soci

etal

impl

icat

ions

(MO

DAL

ITY

CH

OIC

E)Q

uest

ion

: Wha

t are

the

soci

etal

impl

icat

ions

of P

re-d

ialy

sis

Educ

atio

n Pr

ogra

mm

e fo

r adv

ance

d C

KD p

atie

nts?

Bibl

iogr

aphi

cC

itatio

nSt

udy

Type

/Met

hods

LEN

umbe

r of

Patie

nts

& Pa

tient

C

hara

cter

istic

Inte

rven

tion

Com

paris

onLe

ngth

of

Follo

w U

p O

utco

me

Mea

sure

s/Ef

fect

Siz

eG

ener

al

Com

men

ts

1. S

hukl

a AM

, Eas

om

A, S

ingh

M e

t al.

Effe

cts

of a

C

ompr

ehen

sive

Pr

edia

lysi

s Ed

ucat

ion

(CPE

) Pro

gram

on

the

Hom

e D

ialy

sis

Ther

apie

s: A

Ret

rosp

ectiv

e C

ohor

t St

udy.

Perit

Dia

l Int

. 20

17;3

7(5)

:542

-547

.

USA

Ret

rosp

ectiv

e C

ohor

t Stu

dy

Obj

ectiv

e:To

repo

rt th

e fin

ding

s of

a

retro

spec

tive

anal

ysis

of

the

initi

al 2

2 m

onth

s of

ne

wly

form

ed C

PE c

linic

for

adva

nced

CKD

sub

ject

s,

and

its im

pact

on

the

rate

s of

hom

e di

alys

is (H

oD)

Met

hods

:-A

ll pa

tient

s w

ith s

tage

4

and

5 C

KD, w

ith o

ccas

iona

l pa

tient

s of

sta

ge 3

b C

KD

with

rapi

d re

nal p

rogr

essi

on

unde

r the

car

e of

ne

phro

logi

sts

wer

e of

fere

d an

d en

cour

aged

tran

sitio

n to

the

care

of C

PE c

linic

un

der a

sin

gle

neph

rolo

gist

fo

r the

ir ro

utin

e ne

phro

logy

ca

re.

-CPE

clin

ic in

clud

ed:

v

a re

nal

phys

icia

n,

v

an a

dvan

ced

nurs

e pr

actit

ione

r (A

NP)

edu

cato

r, v

a re

nal

diet

icia

n,

v

and

a re

nal

soci

al w

orke

r.

-A p

harm

acis

t was

indu

cted

in

the

CPE

clin

ic fo

r the

la

tter h

alf o

f the

stu

dy

perio

d.-A

ll pa

tient

s ad

mitt

ed to

cl

inic

for fi

rst t

ime

wer

e se

en

on n

ew p

atie

nt p

roto

col,

and

retu

rnin

g pa

tient

s w

ere

seen

on

esta

blis

hed

patie

nt

prot

ocol

-Ana

lysi

s 22

mon

ths

of C

PE

clin

ic w

ere

done

II-2

108

adva

nced

C

KD p

atie

nts

-with

ave

rage

eG

FR o

f 18.

34

± 6.

5 m

L/m

in

wer

e se

en in

the

first

22

mon

ths

of th

e C

PE c

linic

-Maj

ority

of

patie

nts

wer

e re

ferre

d to

the

CPE

clin

ic la

te

with

late

sta

ge

4 (e

GFR

16

– 22

mL/

min

) an

d st

age

5 co

mpr

isin

g 74

%

of th

e to

tal C

PE

popu

latio

n.

Com

preh

ensi

ve P

re-d

ialy

sis

Educ

atio

n Pr

ogra

mm

e (C

PE):

-New

pro

toco

l req

uire

d pa

tient

s to

atte

nd

half-

day

com

preh

ensi

ve e

duca

tion

sess

ion.

-Pts

enc

oura

ged

to a

ttend

with

fam

ily

mem

bers

, spo

use,

or c

areg

iver

s.

-On

arriv

al, p

atie

nts

prov

ided

with

prin

ted

mat

eria

l for

kid

ney

dise

ase

fol

low

ed b

y gr

oup

less

on in

cla

ssro

om fo

rmat

by

rena

l AN

P ed

ucat

or, w

hich

last

ed fo

r a m

in. o

f 1

hour

.-A

fter g

roup

less

on, p

atie

nts

rota

ted

with

re

nal d

ietic

ian,

soc

ial w

orke

r, tra

ined

dia

lysi

s nu

rse

wel

l ver

sed

in a

ll di

alys

is te

chni

ques

, an

d re

nal p

hysi

cian

for p

atie

nt-s

peci

fic

disc

ussi

ons

and

deta

iled

on th

e in

divi

dual

ne

eds

and

ques

tions

. -S

essi

ons

with

dia

lysi

s nu

rse

incl

uded

a

‘han

ds-o

n’ d

emon

stra

tion

of h

ome

perit

onea

l di

alys

is (P

D),

hom

e he

mod

ialy

sis

(HD

), an

d in

-cen

ter m

achi

ne a

s pe

r the

nee

ds a

nd

desi

res

of p

ts.

-Vis

it en

ded

with

det

aile

d se

ssio

n w

ith th

e re

nal p

hysi

cian

. -P

rovi

der s

essi

ons

star

ted

with

an

inte

rvie

w

of th

e in

divi

dual

’s fa

mily

, soc

ial,

med

ical

, and

oc

cupa

tiona

l nee

ds.

-All

prev

ious

ly p

rovi

ded

info

rmat

ion

was

re

view

ed a

nd s

peci

fic q

uest

ions

add

ress

ed.

-Pat

ient

s an

d th

eir c

areg

iver

s en

cour

aged

to

mak

e ‘a

ctiv

e ch

oice

’ for

thei

r RRT

. -A

ny re

mai

ning

mis

conc

eptio

ns o

r fea

rs w

ere

addr

esse

d du

ring

this

fina

l dis

cuss

ion.

-T

he la

st m

embe

r of t

he c

linic

team

reco

rded

fin

al m

odal

ity c

hoic

e in

a p

assi

ve m

anne

r.

Esta

blis

hed

patie

nt p

roto

col

-Gre

ater

fre

edom

for

patie

nts

to

focu

s on

the

area

s of

thei

r ch

oice

with

all

clin

ic m

embe

rs

avai

labl

e fo

r co

unse

lling.

-S

een

by th

e re

nal p

hysi

cian

fo

r the

ir ro

utin

e ne

phro

logy

ca

re.

-Pat

ient

pr

efer

ence

s fo

r RRT

wer

e no

ted

at e

ach

clin

ic v

isit

22 m

onth

sR

esul

ts:

Ove

r 22

mon

ths

CPE

clin

ic:

Rat

es o

f hom

e di

alys

is (H

oD)

v

70%

of p

atie

nts

in C

PE g

roup

ch

ose

HoD

, v

Of w

hich

, 55%

cho

se p

erito

neal

di

alys

is (P

D)

v

and

15%

cho

se h

ome

hem

odia

lysi

s (H

HD

).

-Rat

es o

f HoD

cho

ice

wer

e si

mila

r acr

oss

spec

trum

of s

ocio

-eco

nom

ic v

aria

bles

. -5

4.6%

of t

hose

cho

osin

g to

retu

rn fo

r mor

e th

an 1

ses

sion

, 25.

3%, c

hang

ed th

eir m

odal

ity

pref

eren

ce a

fter t

he fi

rst e

duca

tion

sess

ion,

an

d ne

arly

all

reac

hed

a fin

al m

odal

ity

sele

ctio

n by

the

end

of th

ird v

isit.

-M

ultiv

aria

te a

naly

sis

show

ed th

at th

e ch

oice

of

RRT

mod

ality

was

una

ffect

ed b

y th

e pa

tient

s’ ag

e, g

ende

r, ra

ce, a

vaila

bilit

y an

d ty

pe o

f ins

uran

ce, d

iabe

tes

stat

us, a

lbum

in, o

r th

e st

age

of re

nal d

isea

se (p

> 0

.05)

.-In

itiat

ion

of th

e C

PE p

rogr

am re

sulte

d in

a

216%

gro

wth

in H

oD c

ensu

s ov

er th

e sa

me

perio

d an

d re

sulte

d in

nea

r dou

blin

g of

HoD

pr

eval

ence

to 3

8% o

f all

dial

ysis

pat

ient

s w

ithin

22

mon

ths

of in

itiat

ion.

Aut

hors

con

clus

ion

Com

preh

ensi

ve p

atie

nt e

duca

tion

impr

oves

the

choi

ce a

nd p

reva

lenc

e of

HoD

ther

apie

s. W

e fu

rther

find

that

3 s

essi

ons

of C

PE m

ay p

rovi

de

need

ed re

sour

ces

for t

he la

rge

maj

ority

of

subj

ects

for a

dequ

ate

deci

sion

-mak

ing

Gro

up+

indi

vidu

al

sess

ions

w

ith te

am

mem

bers

77



Evid

ence

Tab

le :

Soci

etal

impl

icat

ions

(MO

DAL

ITY

CH

OIC

E)Q

uest

ion

: Wha

t are

the

soci

etal

impl

icat

ions

of P

re-d

ialy

sis

Educ

atio

n Pr

ogra

mm

e fo

r adv

ance

d C

KD p

atie

nts?

Bibl

iogr

aphi

c C

itatio

nSt

udy

Type

/Met

hods

LEN

umbe

r of P

atie

nts

& Pa

tient

Cha

ract

eris

ticIn

terv

entio

nC

ompa

rison

Leng

th o

f Fo

llow

Up

Out

com

e M

easu

res/

Effe

ct S

ize

Gen

eral

C

omm

ents

2. D

evoe

DJ,

Won

g B,

Ja

mes

MT

et a

l.Pa

tient

Edu

catio

n an

d Pe

riton

eal D

ialy

sis

Mod

ality

Sel

ectio

n:

A Sy

stem

atic

Rev

iew

an

d M

eta-

anal

ysis

. Am

J K

idne

y D

is.

2016

;68(

3):4

22-4

33.

Syst

emat

ic re

view

and

met

a-an

alys

is

Obj

ectiv

e:To

cha

ract

eris

e th

e re

latio

nshi

p be

twee

n pa

tient

-targ

eted

edu

catio

nal i

nter

vent

ions

and

ch

oosi

ng a

nd re

ceiv

ing

PD.

Met

hods

: -S

yste

mat

ic s

earc

h w

ere

done

in M

EDLI

NE,

EM

BASE

, CIN

AHL

and

EBM

R &

incl

uded

co

ntro

lled

obse

rvat

iona

l stu

dies

and

ra

ndom

ized

tria

ls o

f edu

catio

nal i

nter

vent

ions

de

sign

ed to

incr

ease

PD

sel

ectio

n in

the

revi

ew-A

bstra

cts

from

ann

ual m

eetin

g of

the

Amer

ican

Soc

iety

of N

ephr

olog

y fo

r 200

9-20

14 w

ere

revi

ewed

-R

elev

ant a

rticl

es a

lso

hand

sea

rche

d fro

m

refe

renc

e lis

t-T

wo

revi

ewer

s re

view

ed th

e tit

les

and

full

text

for i

nclu

sion

acc

ordi

ng to

crit

eria

:v

adul

ts w

ith C

KDv

repo

rted

patie

nt-ta

rget

ed

educ

atio

n st

rate

gies

abo

ut

avai

labl

e di

alys

is m

odal

ities

v

repo

rted

rele

vant

out

com

es

(cho

osin

g PD

or r

ecei

ving

PD

on

ly o

r cho

osin

g PD

or r

ecei

ving

PD

with

hom

e H

D)

v

and

inco

rpor

ated

sta

ndar

d ca

re

as c

ontro

l gro

up

-Ris

k of

bia

s as

sess

men

t was

don

e-P

rimar

y ou

tcom

e w

as c

hoos

ing

PD, d

efine

d as

inte

ntio

n to

use

PD

rega

rdle

ss o

f whe

ther

PD

was

eve

r use

d.-S

econ

dary

out

com

e, re

ceiv

ing

PD, w

as

defin

ed a

s an

indi

vidu

al re

ceiv

ing

PD a

s hi

s or

her

trea

tmen

t.-M

eta-

anal

ysis

wer

e do

ne, s

tudi

es e

stim

ates

w

ere

pool

ed

IO

f 3,5

40 c

itatio

ns, 1

5 st

udie

s w

ere

incl

uded

:-7

pre

and

pos

t in

terv

entio

n st

udie

s,

-5 c

ohor

t stu

dies

-2 c

ase-

cont

rol

stud

ies

-1 ra

ndom

ised

co

ntro

lled

trial

(RC

T)

-Of 1

5 st

udie

s, 2

w

ere

excl

uded

from

m

eta-

anal

ysis

due

to

mis

sing

info

rmat

ion

-7 s

tudi

es fr

om N

orth

Am

eric

a, 5

from

Eu

rope

, 3 fr

om A

sia.

-Num

ber o

f pa

rtici

pant

s ra

nged

fro

m 6

3 to

21,

302

for

tota

l of 3

1,65

3.-M

ean

age

rang

ed

from

58

to 7

0.8

year

s ol

d-P

erce

ntag

e of

men

ra

nged

from

45%

to

64.3

%-M

ean

eGFR

rang

ed

from

≤15

to 2

0.4

ml/

min

/1.7

3 m

2

-Tw

o st

udie

s in

clud

ed

only

sta

ge 5

or E

SRD

Pre-

dial

ysis

ed

ucat

iona

l in

terv

entio

ns.

-Edu

catio

nal

inte

rven

tions

var

y gr

eatly

bet

wee

n st

udie

s-7

stu

dies

incl

uded

ph

ysic

ian

as a

n ed

ucat

or, 1

0 in

clud

ed a

nur

se,

and

4 in

clud

ed

mul

tidis

cipl

inar

y te

am-8

stu

dies

car

ried

out e

duca

tiona

l in

terv

entio

ns 2

or

mor

e da

ys a

nd 5

st

udie

s in

clud

ed

info

rmat

ion

on d

iet

-8 s

tudi

es c

arrie

d ou

t edu

catio

nal

inte

rven

tions

in g

roup

se

ssio

ns, 5

had

1 to

1

sess

ion

only

and

2

incl

uded

bot

h-6

stu

dies

use

d vi

deo

mat

eria

l, 7

used

pr

inte

d m

ater

ials

, an

d 1

used

web

site

m

ater

ials

-4 s

tudi

es in

clud

ed

fam

ily m

embe

rs

in e

duca

tiona

l in

terv

entio

ns

Stan

dard

car

e

-6 o

ut o

f 15

stud

ies

repo

rted

cont

rol

inte

rven

tion

-of t

he 6

stu

dies

, 2

incl

uded

sta

ndar

d ed

ucat

ion

from

ne

phro

logi

st a

nd

2 ha

d st

anda

rd

educ

atio

n gi

ven

by

mul

tidis

cipl

inar

y te

am

-Dur

atio

n of

follo

w u

p ra

nged

from

12

to 1

44

mon

ths

Res

ults

:Pr

imar

y ou

tcom

e- c

hoos

ing

PD6

stud

ies

repo

rted

prim

ary

outc

ome,

and

5

prov

ided

suf

ficie

nt d

ata

for m

eta-

anal

ysis

:

-In th

e R

CT

(N=7

0), e

duca

tiona

l in

terv

entio

n gr

oup

was

ass

ocia

ted

with

a

mor

e th

an 4

-fold

incr

ease

in th

e od

ds o

f ch

oosi

ng P

D

(OR

, 4.6

0; 9

5% C

I, 1.

19,1

7.74

). -B

ased

on

resu

lts fr

om 4

obs

erva

tiona

l st

udie

s (N

=7,6

53),

patie

nt-ta

rget

ed

educ

atio

nal i

nter

vent

ions

wer

e as

soci

ated

w

ith a

2-fo

ld in

crea

se in

the

odds

of

choo

sing

PD

(poo

led

OR

, 2.1

5; 9

5% C

I, 1.

07,4

.32;

I2 =

76.7

%).

Seco

ndar

y ou

tcom

e-re

ceiv

ing

PD10

stu

dies

repo

rted

seco

ndar

y ou

tcom

e,

only

9 h

ad s

uffic

ient

dat

a fo

r met

a-an

alys

is:

-Bas

ed o

n re

sults

from

9 o

bser

vatio

nal

stud

ies

(N=8

,229

), pa

tient

-targ

eted

ed

ucat

iona

l int

erve

ntio

n w

as a

ssoc

iate

d w

ith a

3-fo

ld in

crea

se in

the

odds

of

rece

ivin

g PD

as

the

initi

al tr

eatm

ent

mod

ality

(O

R, 3

.50;

95%

CI,

2.82

, 4.3

5; I2 =

24.9

%).

Aut

hors

con

clus

ion:

This

sys

tem

atic

revi

ew d

emon

stra

tes

a st

rong

ass

ocia

tion

betw

een

patie

nt-

targ

eted

edu

catio

n in

terv

entio

ns a

nd

the

subs

eque

nt c

hoic

e an

d re

ceip

t of

PD. T

he v

aria

bilit

y in

the

desi

gn o

f the

ed

ucat

iona

l stra

tegi

es id

entifi

ed a

nd th

e st

reng

th o

f ass

ocia

tion

acro

ss s

tudi

es

high

light

the

unce

rtain

ty a

bout

whe

n an

d ho

w e

duca

tiona

l int

erve

ntio

ns s

houl

d be

de

liver

ed, a

s w

ell a

s lik

elih

ood

of im

pact

ac

cord

ing

to b

asel

ine

PD p

enet

ratio

n.

78


Bibl

iogr

aphi

cC

itatio

nSt

udy

Type

/Met

hods

LEN

umbe

r of

Patie

nts

&Pa

tient

C

hara

cter

istic

Inte

rven

tion

Com

paris

onLe

ngth

of

Follo

w U

p O

utco

me

Mea

sure

s/Ef

fect

Siz

eG

ener

al

Com

men

ts

3. d

e M

aar

JS, d

e G

root

M

A, L

uik

PT e

t al

. GU

IDE,

a

stru

ctur

edpr

e-di

alys

is

prog

ram

me

that

incr

ease

s th

e us

e of

ho

me

dial

ysis

. C

lin K

idne

y J.

2016

;9(6

):826

-83

2.

Amst

erda

m,

The

Net

herla

nds

Cro

ss-s

ectio

nal s

tudy

Obj

ectiv

e:To

ans

wer

the

follo

win

g qu

estio

n:

Doe

s th

e im

plem

enta

tion

of a

stru

ctur

ed p

re-d

ialy

sis

prog

ram

me

with

a h

ome-

focu

sed

appr

oach

incr

ease

the

num

ber o

f pre

-dia

lysi

s pa

tient

s th

at c

hoos

e ho

me

dial

ysis

, and

the

num

ber o

f pat

ient

s th

at

even

tual

ly re

ceiv

e ho

me

dial

ysis

?M

etho

ds-R

ecor

ds o

f all

102

patie

nts

that

rece

ived

a tr

eatm

ent

reco

mm

enda

tion

in th

e G

UID

E pr

ogra

mm

e be

twee

n 12

Sep

tem

ber

2013

and

18

Dec

embe

r 201

4 at

Mea

nder

Med

ical

Cen

tre w

ere

retro

spec

tivel

y re

view

ed.

-The

stru

ctur

ed p

re-d

ialy

sis

prog

ram

me

(GU

IDE)

pro

cess

sta

rts

whe

n a

patie

nt h

as a

n eG

FR o

f 15

mL/

min

/1.7

3 m

2 . -B

egin

s w

ith h

ome

visi

t fro

m a

cas

e m

anag

er (s

ocia

l wor

ker)

durin

g w

hich

firs

t edu

catio

n is

giv

en a

nd s

uita

bilit

y fo

r hom

e di

alys

is is

as

sess

ed.

-Nex

t, qu

estio

nnai

res

wer

e co

mpl

eted

by

patie

nt, c

ase

man

ager

an

d ne

phro

logi

st.

-Pat

ient

que

stio

nnai

re c

onta

ins:

v

ques

tions

abo

ut th

e pa

tient

’s so

cial

sup

port

syst

em,

v

daily

act

iviti

es,

v

leve

l of i

ndep

ende

nce

in a

ctiv

ities

of d

aily

livi

ng (A

DL)

, v

aspe

cts

of li

fe th

at p

atie

nt v

alue

s m

ost

v

and

pref

eren

ces

and

expe

ctat

ions

with

rega

rd to

RRT

.

-Med

ical

que

stio

nnai

re c

ompr

ises

the

cate

gorie

s Tr

ansp

lant

atio

n,

PD a

nd H

D, w

hich

con

tain

que

stio

ns a

bout

rela

tive

and

abso

lute

co

ntra

indi

catio

ns fo

r eac

h th

erap

y an

d ne

phro

logi

st’s

treat

men

t pr

efer

ence

. -C

ase

man

ager

’s qu

estio

nnai

re c

over

s th

e su

itabi

lity

of th

e ho

me,

th

e so

cial

env

ironm

ent a

nd th

e ba

lanc

e be

twee

n bu

rden

and

ca

paci

ty a

nd e

nds

with

cas

e m

anag

er’s

judg

men

t of w

heth

er o

r not

ho

me

dial

ysis

wou

ld b

e su

itabl

e.-A

mul

tidis

cipl

inar

y m

eetin

g (M

DM

) is

held

to d

eter

min

e a

spec

ific

patie

nt p

rofil

e (tr

eatm

ent r

ecom

men

datio

n).

-In M

DM

, mos

t sui

tabl

e tre

atm

ent f

or p

artic

ular

pat

ient

is c

hose

n,

whi

le ta

king

into

acc

ount

the

sequ

ence

of p

rogr

amm

e’s

treat

men

t pr

efer

ence

.-T

his

sequ

ence

impl

ies

trans

plan

tatio

n is

reco

mm

ende

d w

hen

poss

ible

ove

r dia

lysi

s an

d ho

me

dial

ysis

ove

r in-

cent

re d

ialy

sis.

-A

n au

tom

ated

GU

IDE

dash

boar

d, w

hich

gen

erat

es a

pro

file

usin

g an

alg

orith

m b

ased

on

answ

ers

to th

e qu

estio

nnai

res

-Thi

s is

follo

wed

by

patie

nt e

duca

tion,

a s

econ

d M

DM

and

fina

lly

the

sele

ctio

n of

the

treat

men

t by

the

patie

nt a

nd th

e ne

phro

logi

st.

II-3

102

patie

nts

wer

e in

clud

ed

who

sta

rted

the

proc

ess

at

a m

ean

eGFR

of

12.

3 m

L/m

in/1

.73

m2 .

-Mea

n ag

e w

as 6

8.6

year

s an

d 44

.1%

w

ere

fem

ale

GU

IDE

(stru

ctur

ed p

re-

dial

ysis

pro

gram

me)

-Afte

r MD

M, s

peci

alis

ed

pre-

dial

ysis

nur

se

prov

ides

edu

catio

n ta

ilore

d to

pat

ient

’s pr

ofile

.-A

ll pa

tient

s re

ceiv

e ge

nera

l RRT

in

form

atio

n-T

rain

ing

that

pat

ient

an

d fa

mily

mem

bers

re

ceiv

es b

efor

e th

e st

art o

f hom

e di

alys

is is

di

scus

sed.

-If

ther

e ar

e no

fam

ily

mem

bers

who

are

w

illing

or a

ble

to

cont

ribut

e, p

assi

ve

HH

D (o

r pas

sive

PD

) w

ith th

e he

lp o

f hom

e ca

re is

dis

cuss

ed.

-If th

e pr

ofile

onl

y in

clud

es C

HD

, no

info

rmat

ion

is p

rovi

ded

on o

ther

mod

aliti

es-E

duca

tion

is p

rovi

ded

in a

sin

gle

sess

ion,

w

hich

is re

peat

ed if

the

patie

nt w

ishe

s.

-Writ

ten

broc

hure

s an

d ed

ucat

iona

l vid

eos

are

also

pro

vide

d.-M

eetin

gs w

ith o

ther

pa

tient

s ar

e of

fere

d an

d ar

rang

ed if

requ

este

d by

the

patie

nt o

r the

ir fa

mily

. -P

atie

nt’s

resp

onse

to

this

edu

catio

nal

sess

ion

is d

iscu

ssed

in

a se

cond

MD

M.

-Fol

low

ing

this

, pat

ient

an

d ne

phro

logi

st

choo

se a

trea

tmen

t m

odal

ity d

urin

g th

e ne

xt

visi

t to

the

outp

atie

nt

clin

ic.

Res

ults

:

v

Hom

e di

alys

is w

as

reco

mm

ende

d fo

r 62.

8% o

f the

pa

tient

s w

ho w

ere

advi

sed

to

have

dia

lysi

s tre

atm

ent.

v

Of p

atie

nts

that

opt

ed

for d

ialy

sis,

34.

2% c

hose

PD

an

d 8.

2% c

hose

HH

D;

v

22.9

% s

tarte

d ho

me

dial

ysis

as

thei

r firs

t the

rapy

, com

pare

d w

ith 1

7.6%

in th

e m

onth

s be

fore

im

plem

enta

tion

of G

UID

E.

v

32.1

% o

f the

pat

ient

s th

at

rece

ived

dia

lysi

s th

erap

y re

ceiv

ed h

ome

dial

ysis

. v

In th

e m

onth

s be

fore

GU

IDE,

an

aver

age

of ju

st 1

9.5%

of p

atie

nts

rece

ived

dia

lysi

s re

ceiv

ed h

ome

dial

ysis

.

Aut

hors

con

clus

ion:

Com

pare

d w

ith h

isto

rical

dat

a, th

e st

anda

rdis

ed a

nd h

ome-

focu

sed

pre

dial

ysis

pro

gram

me

GU

IDE,

with

its

hom

e vi

sit,

seem

s to

suc

cess

fully

incr

ease

the

num

ber o

f pat

ient

s th

at c

hoos

e an

d re

ceiv

e ho

me

dial

ysis

Educ

atio

n st

arts

with

ho

me

visi

t, M

DM

m

eetin

g, a

nd

educ

atio

n+

train

ing,

se

cond

MD

M

and

final

ch

oice

of

RRT

Evid

ence

Tab

le :

Soci

etal

impl

icat

ions

(MO

DAL

ITY

CH

OIC

E)Q

uest

ion

: Wha

t are

the

soci

etal

impl

icat

ions

of P

re-d

ialy

sis

Educ

atio

n Pr

ogra

mm

e fo

r adv

ance

d C

KD p

atie

nts?

79



Evid

ence

Tab

le :

Soci

etal

impl

icat

ions

(MO

DAL

ITY

CH

OIC

E)Q

uest

ion

: Wha

t are

the

soci

etal

impl

icat

ions

of P

re-d

ialy

sis

Educ

atio

n Pr

ogra

mm

e fo

r adv

ance

d C

KD p

atie

nts?

Bibl

iogr

aphi

c C

itatio

nSt

udy

Type

/Met

hods

LEN

umbe

r of P

atie

nts

& Pa

tient

Cha

ract

eris

ticIn

terv

entio

nC

ompa

rison

Leng

th o

f Fo

llow

Up

Out

com

e M

easu

res/

Effe

ct S

ize

Gen

eral

C

omm

ents

4. V

an d

en B

osch

J,

War

ren

DS,

Rut

herfo

rd

PA. R

evie

w o

f pr

edia

lysi

s ed

ucat

ion

prog

ram

s: a

nee

d fo

r st

anda

rdiz

atio

n. P

atie

nt

Pref

er A

dher

ence

. 20

15;9

:127

9-12

91.

Syst

emat

ic re

view

Obj

ectiv

e:

To re

view

evi

denc

e on

effe

ctiv

e co

mpo

nent

s of

pre

-dia

lysi

s ed

ucat

ion

prog

ram

mes

as

rela

ted

to m

odal

ity c

hoic

e an

d se

lect

ed c

linic

al o

utco

mes

.

Met

hod:

-Sys

tem

atic

sea

rch

was

per

form

ed o

n Pu

bMed

MED

LIN

E, C

ochr

ane

Libr

ary,

and

Ovi

d (fr

om J

anua

ry 1

, 199

5 to

Dec

embe

r 31

, 201

3)

-Incl

usio

n cr

iteria

app

lied:

v

Adul

ts o

nly

v

Pre-

dial

ysis

edu

catio

n fo

r CKD

pa

tient

s st

age

III, I

V, a

nd V

v

Plan

ned

star

t pat

ient

s,

unpl

anne

d st

art p

atie

nts,

and

pa

tient

s on

dia

lysi

s, ie

, inc

iden

t an

d pr

eval

ent p

atie

nts.

v

Det

aile

d de

scrip

tion

of

prog

ram

me

v

Mul

tiple

ses

sion

sv

Mul

tidis

cipl

inar

y pr

ogra

mm

e in

volv

ing

phys

icia

ns, n

urse

s,

diet

icia

ns, e

tc.

-Out

com

es in

clud

ed:

v

Dia

lysi

s m

odal

ity c

hoic

e an

d th

e nu

mbe

rs o

f pat

ient

s ch

oosi

ng e

ach

mod

ality

v

Any

clin

ical

out

com

e as

soci

ated

with

pre

-dia

lysi

s ed

ucat

ion

v

Hea

lth-re

late

d qu

ality

of l

ife

v

Mea

sure

s as

soci

ated

with

pa

tient

cho

ice

v

Fina

ncia

l im

pact

of p

atie

nts

choo

sing

mor

e ho

me

ther

apie

s v

Patie

nt s

atis

fact

ion

-Lite

ratu

re a

lso

revi

ewed

for a

ny

info

rmat

ion

on p

roce

sses

, pat

hway

s, a

nd

orga

niza

tion

of th

e pr

e-di

alys

is e

duca

tion

prog

ram

mes

I29

rele

vant

stu

dies

:19

qua

si-e

xper

imen

tal

desi

gn10

nar

rativ

e re

view

s

-19

stud

ies

wer

e an

alys

ed fo

r effe

ctiv

e co

mpo

nent

s of

pre

-di

alys

is e

duca

tion

prog

ram

me

-Des

crip

tions

of

the

educ

atio

nal

proc

ess

varie

d an

d in

clud

ed in

divi

dual

an

d gr

oup

educ

atio

n,

mul

tidis

cipl

inar

y in

terv

entio

n, a

nd

vary

ing

dura

tion

and

frequ

ency

of s

essi

ons.

Pre-

dial

ysis

ed

ucat

ion

prog

ram

mes

Res

ults

Mod

ality

sel

ectio

n-6

out

of 9

stu

dies

repo

rting

on

dial

ysis

mod

ality

se

lect

ion

note

d a

high

er p

ropo

rtion

of p

atie

nts

sele

ctin

g ho

me

dial

ysis

(PD

or a

noth

er h

ome

mod

ality

)

Cha

nouz

as e

t al.

(201

2)20

% c

hose

PD

. 50

% c

hoos

ing

PD re

ceiv

ed P

DEP

vs

33%

of H

D

patie

nts.

Klan

g et

al.

(199

8)H

ighe

r pat

ient

s ch

ose

PD

Levi

n et

al.

(199

7)53

% o

f PD

EP g

roup

cho

se P

D v

s. 4

2% in

con

trol

Man

ns e

t al.

(200

5)82

.1%

of P

DEP

gro

up c

hose

sel

f-car

e di

alys

is v

s 50

%

in c

ontro

l

McL

augh

lin e

t al.

(200

8)PD

EP g

roup

mor

e lik

ely

to c

hoos

e se

lf-ca

re d

ialy

sis

Rib

itsch

et a

l. (2

013)

54.3

% in

PD

EP g

roup

sta

rted

with

PD

vs

28%

in

cont

rol

-3 s

tudi

es fo

und

no s

igni

fican

t diff

eren

ce in

mod

ality

ch

oice

-4 s

tudi

es w

ith p

re- a

nd p

ost-

inte

rven

tion

(pre

-dia

lysi

s ed

ucat

ion)

mea

sure

men

ts s

how

ed h

ighe

r lev

els

of

hom

e di

alys

is u

se a

fter t

he p

re-d

ialy

sis

educ

atio

n in

terv

entio

n

Mos

tly w

ithou

t co

ntro

l gro

up

80


Bibl

iogr

aphi

c C

itatio

nSt

udy

Type

/Met

hods

LEN

umbe

r of

Patie

nts

& Pa

tient

C

hara

cter

istic

Inte

rven

tion

Com

paris

onLe

ngth

of

Follo

w U

p O

utco

me

Mea

sure

s/Ef

fect

Siz

eG

ener

al

Com

men

ts

If p

atie

nts/

sta

ff di

d no

t spo

ntan

eous

ly ta

lk a

bout

th

e pr

e-di

alys

is p

erio

d, th

ey w

ere

prom

pted

with

an

open

-end

ed q

uest

ion

abou

t how

trea

tmen

t dec

isio

ns

wer

e m

ade

-Sem

i-stru

ctur

ed q

ualit

ativ

e te

leph

one

inte

rvie

ws

wer

e un

derta

ken

with

20–

25 p

atie

nts

per s

ite u

ntil

satu

ratio

n w

as a

chie

ved.

-S

taff

popu

latio

n w

as c

linic

al s

taff

wor

king

with

CKD

st

age

5 pa

tient

s an

d m

anag

eria

l sta

ff.

-Sem

i-stru

ctur

ed q

ualit

ativ

e fa

ce-to

-face

inte

rvie

ws

wer

e un

derta

ken

on-s

ite w

ith 2

0–30

sta

ff pe

r site

unt

il sa

tura

tion

was

ach

ieve

d.

-Inte

rvie

ws

last

ed fo

r 30–

60 m

in a

nd w

ere

unde

rtake

n in

priv

ate

with

onl

y th

e in

terv

iew

er a

nd in

terv

iew

ee

pres

ent

-All

inte

rvie

ws

wer

e au

dio

reco

rded

and

wer

e tra

nscr

ibed

ver

batim

by

a sp

ecia

list t

rans

crip

tion

team

. -T

rans

crip

ts w

ere

chec

ked

by re

sear

cher

s bu

t not

pa

rtici

pant

s-T

he w

ritte

n an

d au

dio-

visu

al P

DE

mat

eria

ls u

sed

in

each

site

wer

e al

so re

view

ed-D

ata

was

ana

lyse

d us

ing

them

atic

fram

ewor

k an

alys

is.

The

impa

ct o

f dis

tres

sv

a st

rong

them

e ac

ross

all

patie

nt g

roup

s an

d si

tes

v

Patie

nts

desc

ribed

at l

engt

h, th

e tra

umat

ic a

nd fr

ight

enin

g na

ture

of t

he tr

ansi

tion

to e

nd-

stag

e re

nal f

ailu

rev

Patie

nts’

abilit

ies

to m

ake

treat

men

t dec

isio

ns w

ere

adve

rsel

y af

fect

ed in

the

pre-

dial

ysis

pe

riod

by e

mot

iona

l dis

tress

v

Very

few

sta

ff ap

pear

ed to

app

reci

ate

the

pote

ntia

l adv

erse

impa

ct o

f psy

chol

ogic

al

dist

ress

on

patie

nts’

abilit

y to

mak

e tre

atm

ent d

ecis

ions

.

v

Auth

ors

conc

lusi

on:

-Sug

gest

ed im

prov

emen

ts to

teac

hing

met

hods

and

edu

catio

nal m

ater

ials

are

in li

ne w

ith p

revi

ous

stud

ies

and

curre

nt c

linic

al g

uide

lines

. -A

ll st

aff,

irres

pect

ive

of th

eir r

ole,

nee

d to

be

train

ed a

bout

all

treat

men

t opt

ions

so

that

info

rmal

co

nver

satio

ns w

ith p

atie

nts

are

not b

iase

d.

-The

stu

dy a

rgue

s fo

r a m

ore

indi

vidu

alis

ed a

ppro

ach

to P

DE

whi

ch is

mor

e lik

e co

unse

lling

than

ed

ucat

ion

and

wou

ld d

eman

d a

high

er le

vel o

f ski

ll an

d tra

inin

g fo

r spe

cial

ist P

DE

staf

f. -T

he s

tudy

con

clud

es th

at e

ven

if th

ese

impr

ovem

ents

are

mad

e to

PD

E, n

ot a

ll pa

tient

s w

ill be

nefit

, be

caus

e so

me

find

deci

sion

-mak

ing

in th

e pr

e-di

alys

is p

erio

d to

o co

mpl

ex o

r are

una

ble

to e

ngag

e w

ith

educ

atio

n du

e to

illn

ess

or e

mot

iona

l dis

tress

. -It

is th

eref

ore

reco

mm

ende

d th

at p

re-d

ialy

sis

treat

men

t de

cisi

ons

are

tem

pora

ry, a

nd th

at P

DE

is re

plac

ed w

ith o

n-go

ing

RRT

edu

catio

n w

hich

pro

vide

s op

portu

nitie

s fo

r per

sona

lised

edu

catio

n an

d on

-goi

ng re

view

of p

atie

nts’

treat

men

t cho

ices

. -E

mot

iona

l sup

port

to h

elp

over

com

e th

e di

stre

ss o

f the

tran

sitio

n to

end

-sta

ge re

nal d

isea

se w

ill al

so b

e es

sent

ial t

o en

sure

all

patie

nts

can

bene

fit fr

om R

RT e

duca

tion.

81



Evid

ence

Tab

le :

Soci

etal

impl

icat

ions

(MO

DAL

ITY

CH

OIC

E)Q

uest

ion

: Wha

t are

the

soci

etal

impl

icat

ions

of P

re-d

ialy

sis

Educ

atio

n Pr

ogra

mm

e fo

r adv

ance

d C

KD p

atie

nts?

Bibl

iogr

aphi

c C

itatio

nSt

udy

Type

/Met

hods

LEN

umbe

r of P

atie

nts

& Pa

tient

Cha

ract

eris

ticIn

terv

entio

nC

ompa

rison

Leng

th o

f Fo

llow

Up

Out

com

e M

easu

res/

Effe

ct S

ize

Gen

eral

C

omm

ents

5. C

anka

ya E

, Cet

inka

ya

R, K

eles

M e

t al.

Doe

s a

pred

ialy

sis

educ

atio

n pr

ogra

m

incr

ease

the

num

ber o

f pr

e-em

ptiv

e re

nal

trans

plan

tatio

ns?

Tran

spla

nt P

roc.

20

13;4

5(3)

:887

-889

.

Turk

ey

Cro

ss-s

ectio

nal s

tudy

Obj

ectiv

e:To

inve

stig

ate

rela

tions

hip

betw

een

pre-

dial

ysis

edu

catio

n pr

ogra

mm

e (P

DEP

) for

pat

ient

s an

d th

eir

rela

tives

and

pre

-em

ptiv

e RT

Met

hod:

-Pat

ient

s w

ho u

nder

wen

t liv

ing

dono

r ki

dney

tran

spla

ntat

ion

betw

een

May

20

04 a

nd A

ugus

t 201

2 w

ere

enro

lled

in th

e st

udy

-Pat

ient

s w

ere

divi

ded

into

two

grou

ps: v

trans

plan

tatio

n w

ithou

t pr

e-di

alys

is e

duca

tion

prog

ram

(Non

-PD

EP)

v

trans

plan

tatio

n w

ith

PDEP

-Pre

-em

ptiv

e tra

nspl

anta

tions

rate

s w

ere

com

pare

d be

twee

n tw

o gr

oups

II-3

88 li

ve d

onor

kid

ney

trans

plan

t rec

ipie

nts

into

2 g

roup

s:

-Tra

nspl

anta

tion

with

out e

duca

tion

(non

-PD

EP;n

=27)

, an

d ed

ucat

ion

befo

re

trans

plan

tatio

n(P

DEP

;n =

61)

.

-Mea

n eG

FR n

on-

PDEP

10.

2 ±2

.1

(sta

ge 5

),-M

ean

eGFR

PD

EP

12.2

± 1

.7 (s

tage

5)

Pre-

dial

ysis

edu

catio

n pr

ogra

mm

e(P

DEP

)

-Spe

cial

ly p

repa

red

kit u

sing

vis

uals

an

d w

ritte

n ca

rds

with

6 m

odul

es.

-Thi

s ki

t edu

cate

s C

KD p

atie

nts

and

thei

r rel

ativ

es-S

umm

ary

of m

odul

es:

Mod

ule

1-In

fo a

bout

kid

ney

dise

ase

Mod

ule

2-D

iet,

drug

s an

d ex

erci

se in

CKD

Mod

ule

3-In

to to

tx o

f ren

al fa

ilure

and

gen

eral

in

fo a

bout

RRT

Mod

ule4

-PD

Mod

ule5

-HD

-K

idne

y tra

nspl

anta

tion

-a fi

le w

as o

pene

d fo

r eac

h pa

tient

, de

term

inin

g so

cial

, cul

tura

l, ec

onom

ic, p

hysi

cal a

nd p

sych

olog

ical

pr

ofile

s.-D

urin

g ea

ch v

isit

to o

utpa

tient

cl

inic

s, p

atie

nt c

ompl

ains

, phy

sica

l ex

amin

atio

n fin

ding

s an

d la

b re

sults

w

ere

reco

rded

and

eG

FR c

alcu

late

d.-P

atie

nts

with

ear

ly s

tage

will

star

t w

ith m

odul

e 1,

2,3

-Pat

ient

s w

ith s

tage

3b

n 4,

will

star

t w

ith 1

,2,3

,4,5

,6-P

atie

nts

with

sta

ge 5

, mod

ules

with

R

RT c

hose

n by

pat

ient

will

be s

tarte

d

No

pre-

dial

ysis

ed

ucat

ion

prog

ram

me

(Non

-PD

EP)

Res

ults

:Pr

e-em

ptiv

e ki

dney

tran

spla

ntat

ion

-Pre

-em

ptiv

e ki

dney

tran

spla

ntat

ion

rate

s am

ong

PDEP

gro

up s

igni

fican

tly

high

er c

ompa

red

with

the

non-

PDEP

gr

oup

(42.

6% v

s 18

.5%

, P<0

.001

)-M

othe

rs w

ere

the

mos

t num

erou

s do

nors

in b

oth

grou

ps-D

onor

tran

spla

ntat

ion

rate

s fro

m

spou

se, s

iblin

gs a

nd o

ther

rela

tives

wer

e hi

gher

am

ong

the

PDEP

gro

up P

<0.0

01,

P=0.

001,

and

P=0

.002

, res

pect

ivel

y.

Aut

hors

con

clus

ion:

Pre-

dial

ysis

edu

catio

n pr

ogra

mm

e in

crea

sed

the

num

ber o

f pre

-em

ptiv

e re

nal t

rans

plan

tatio

n am

ong

ESR

D

patie

nts,

redu

cing

dia

lysi

s-re

late

d co

mpl

icat

ions

and

cos

ts. D

isse

min

atio

n of

PD

EP in

nep

hrol

ogy

outp

atie

nt c

linic

s ap

pear

s to

be

favo

urab

le fo

r pat

ient

he

alth

, qua

lity

of li

fe a

nd e

cono

mic

s.

Educ

atio

n us

ing

train

ing

kit

82


Bibl

iogr

aphi

c C

itatio

nSt

udy

Type

/Met

hods

LEN

umbe

r of

Patie

nts

& Pa

tient

C

hara

cter

istic

Inte

rven

tion

Com

paris

onLe

ngth

of

Follo

w U

p O

utco

me

Mea

sure

s/Ef

fect

Siz

eG

ener

al

Com

men

ts

1. B

rend

an P

. C

assi

dy, L

ori

Har

woo

d, L

eah

E et

al.

Educ

atio

nal

Supp

ort A

roun

d D

ialy

sis

Mod

ality

D

ecis

ion

Mak

ing

in P

atie

nts

With

C

hron

ic K

idne

y D

isea

se: Q

ualit

ativ

e St

udy

Can

J K

idne

y H

ealth

Dis

. 201

8; 5

: 20

5435

8118

8033

23

Can

ada

Qua

litat

ive

stud

y.

Obj

ectiv

eTo

exp

lore

par

ticip

ants

’ sa

tisfa

ctio

n w

ith th

e ed

ucat

ion

they

rece

ived

, whi

le id

entif

ying

ed

ucat

iona

l nee

ds, a

nd th

e in

fluen

ce o

f the

edu

catio

nal

proc

ess

in th

eir d

ialy

sis

mod

ality

de

cisi

on m

akin

g

Met

hods

-A q

ualit

ativ

e de

scrip

tive

stud

y w

as c

ondu

cted

with

a s

ampl

e of

12

par

ticip

ants

bet

wee

n Au

gust

-Se

ptem

ber 2

016

-Elig

ible

par

ticip

ants

wer

e pa

tient

s w

ith C

KD o

n ei

ther

: v

in-c

entre

he

mod

ialy

sis

(IC-H

D),

v

PD,

v

Hom

e-H

D

who

sta

rted

dial

ysis

with

in 6

m

onth

s of

the

stud

y an

d w

ere

>18

year

s of

age

, flue

nt in

Eng

lish,

an

d ab

le to

par

ticip

ate

in a

n op

en-e

nded

inte

rvie

w.-C

KD e

duca

tion

was

pro

vide

d by

m

ultid

isci

plin

ary

team

. -4

pat

ient

s fro

m e

ach

dial

ysis

m

odal

ity w

ere

inte

rvie

wed

, alo

ng

with

any

fam

ily m

embe

rs p

rese

nt-P

atie

nts

also

com

plet

ed

dem

ogra

phic

sur

vey

-A 3

0- to

60-

min

ute

sem

i st

ruct

ured

inte

rvie

w u

sing

the

AID

ET (A

ckno

wle

dge,

Intro

duce

, D

urat

ion,

Exp

lana

tion,

Tha

nk

You)

pro

toco

l was

con

duct

ed w

ith

patie

nts/

fam

ily m

embe

rs--I

nter

view

s w

ere

done

exp

lorin

g:a.

h

ow p

atie

nts

rece

ive

info

rmat

ion,

b.

it

s in

fluen

ce o

n th

eir

deci

sion

s,

c. h

ow th

e cu

rrent

edu

catio

nal

supp

orts

cou

ld b

e im

prov

ed.

-Key

wor

ds, p

hras

es, a

nd

desc

riptio

ns w

ere

anal

ysed

and

ca

tego

rized

into

them

es.

-Quo

tes

wer

e ex

tract

ed to

bes

t re

pres

ent t

he p

atie

nt v

oice

and

w

ere

mat

ched

to th

emes

thro

ugh

team

con

sens

us.

12 p

artic

ipan

ts

-4 p

atie

nts

from

eac

h di

alys

is

mod

ality

(IC

-HD

, PD

, H

ome-

PD)

-7 m

ale:

5

fem

ale

-Age

rang

e of

23

to 7

7 ye

ars,

med

ian

age

62 y

ears

ol

d.-H

ighe

st

leve

ls o

f ed

ucat

ion

atta

ined

:H

igh

scho

ol

(33%

), co

llege

(5

0%),

and

post

grad

uate

de

gree

(1

7%),.

Mul

tidis

cipl

inar

y pr

e-di

alys

is

educ

atio

n

Educ

atio

nal

supp

orts

in

clud

ed:

-Kid

ney

Foun

datio

n of

Can

ada

bind

er, L

ivin

g W

ith K

idne

y D

isea

se, 4

th

editi

on,

-4 m

ultim

odal

sm

all g

roup

cl

asse

s,

-pat

ient

par

tner

s,

-and

a li

st o

f tru

sted

CKD

on

line

reso

urce

s

The

4 cl

asse

s co

vere

d:-s

elf-

man

agem

ent,

-livi

ng w

ith

CKD

, -st

ages

of

chan

ge,

-vid

eos

and

dem

onst

ratio

ns

of e

ach

dial

ysis

m

odal

ity,

-a p

atie

nt p

anel

, -v

ascu

lar a

cces

s,

-and

a to

ur o

f the

di

alys

is u

nit

Res

ults

:3

over

arch

ing

them

es in

fluen

ced

the

mod

ality

dec

isio

n-m

akin

g pr

oces

s:

v

Patie

nt F

acto

rs (i

ndiv

idua

lisat

ion,

aut

onom

y, an

d em

otio

ns),

v

Educ

atio

nal F

acto

rs (t

ailo

red

educ

atio

n, a

ppro

pria

te ti

me/

info

rmat

ion,

and

ava

ilabl

e re

sour

ces)

, v

and

Supp

ort S

yste

ms

(par

tner

ship

with

hea

lth c

are

team

(HC

T) a

nd fa

mily

/frie

nds)

.

Patie

nt F

acto

rsa.

Indi

vidu

alis

atio

n-In

divi

dual

circ

umst

ance

s in

clud

ing

trans

porta

tion,

leve

l of a

ctiv

ity, l

ivin

g si

tuat

ion,

and

sup

port

syst

ems

b.A

uton

omy

-Var

ying

leve

ls o

f pat

ient

’s in

depe

nden

ce, a

bilit

y an

d w

illing

ness

to e

ngag

e, a

nd p

refe

rred

diffe

rent

qua

ntiti

es o

f in

form

atio

n.c.

Emot

ions

-with

out a

dequ

ate

unde

rsta

ndin

g of

thei

r cur

rent

hea

lth s

tate

, pat

ient

s ex

perie

nced

fear

, den

ial,

regr

et, a

nger

, an

d sh

ock.

Educ

atio

nal F

acto

rsa.

Tai

lore

d ed

ucat

ion

-Pat

ient

s te

nded

to re

ceiv

e in

form

atio

n m

ore

effe

ctiv

ely,

with

act

ive

enga

gem

ent a

nd m

otiv

atio

n to

lear

n w

hen

prov

ided

in a

ccor

danc

e w

ith th

eir p

refe

rred

lear

ning

sty

les.

-Dem

ogra

phic

and

gen

erat

iona

l var

ianc

e w

as a

ppar

ent i

n th

e w

ay c

erta

in p

artic

ipan

ts w

ishe

d to

rece

ive

info

rmat

ion.

-Pat

ient

s’ re

ques

ts to

impr

ove

the

curre

nt e

duca

tiona

l sup

port

incl

uded

mor

e fa

ce-to

-face

edu

catio

n fr

om

clin

icia

ns a

nd p

atie

nts,

vid

eos

on d

ialy

sis,

onl

ine

educ

atio

nal c

lass

es, a

nd w

ritte

n in

form

atio

n vi

a pa

mph

lets

. b.

App

ropr

iate

tim

e an

d in

form

atio

n-P

rovi

ding

tim

e an

d re

peat

ed e

xpos

ure

to in

form

atio

n en

hanc

ed p

atie

nt-in

form

ed d

ecis

ion

mak

ing

-App

ropr

iate

am

ount

of t

ime

diffe

rs a

mon

g pa

tient

s. W

hen

not g

iven

eno

ugh

time,

pat

ient

s fe

lt ru

shed

, bar

rage

d w

ith in

form

atio

n, a

nd o

verw

helm

ed-P

atie

nts

also

repo

rted

feel

ing

they

did

not

rece

ive

bala

nced

info

rmat

ion

in te

rms

of b

oth

bene

fits

and

draw

back

s of

eac

h m

odal

ity a

nd d

esire

d a

mor

e pr

agm

atic

app

roac

h-O

ne p

atie

nt h

ad 2

clin

icia

ns p

rovi

ding

info

rmat

ion,

one

pre

sent

ing

optio

ns in

a h

opef

ul m

anne

r, w

hile

the

othe

r w

as m

ore

real

istic

abo

ut li

fe o

n di

alys

is. T

he p

atie

nt p

refe

rred

the

latte

r app

roac

hc.

Ava

ilabl

e re

sour

ces

-Edu

catio

nal s

uppo

rts u

tilis

ed b

y pa

tient

s ha

d a

sign

ifica

nt im

pact

on

thei

r per

cept

ion

of e

ach

mod

ality

. How

ever

, no

t all

reso

urce

s w

ere

acce

ssed

, eve

n w

hen

offe

red

-The

mul

tidis

cipl

inar

y te

ams

wer

e in

fluen

tial i

n su

ppor

ting

patie

nts

thro

ugh

the

pre-

dial

ysis

per

iod

and

in d

ialy

sis

mod

ality

cho

ice.

Pat

ient

s be

nefit

ed fr

om g

roup

lear

ning

and

sha

red

patie

nt e

xper

ienc

es a

nd p

erce

ptio

ns.

-The

hae

mod

ialy

sis

unit

tour

hel

ped

set e

xpec

tatio

ns, e

ase

fear

s, a

nd in

crea

se c

omfo

rt le

vels

. The

KFo

C

bind

er a

nd C

KD w

ebsi

tes

appe

ared

to p

lay

a la

rger

role

in im

prov

ing

patie

nts’

unde

rsta

ndin

g of

CKD

, the

m

odal

ity o

ptio

ns a

vaila

ble,

and

pro

mpt

ing

ques

tions

to a

sk th

e H

CT,

rath

er th

an d

irect

ly im

pact

ing

thei

r mod

ality

de

cisi

on.

Supp

ort s

yste

ms

a.Pa

rtne

rshi

p w

ith H

CT.

-N

ephr

olog

ists

pla

y a

sign

ifica

nt ro

le in

mod

ality

edu

catio

n an

d de

cisi

on m

akin

g- W

hen

a tru

stin

g pa

rtner

ship

was

est

ablis

hed,

pat

ient

s ha

d an

enh

ance

d se

nse

of im

porta

nce,

con

trol,

and

resp

ect.

b.Fa

mily

and

frie

nds.

-P

atie

nts

relie

d on

fam

ily a

nd fr

iend

s, a

nd la

ck o

f sup

port

ofte

n in

fluen

ced

the

deci

sion

for I

C-H

D o

ver a

hom

e-ba

sed

ther

apy.

-Som

e pa

tient

s re

lied

on fa

mily

mem

bers

to e

duca

te th

emA

utho

rs c

oncl

usio

n:M

odal

ity s

elec

tion

is a

com

plex

pro

cess

requ

iring

an

indi

vidu

aliz

ed a

ppro

ach

for e

ach

patie

nt. P

atie

nts’

deci

sion

s on

rena

l rep

lace

men

t the

rapy

are

influ

ence

d th

roug

h th

eir o

wn

pref

eren

ces

and

valu

es, t

he e

duca

tion

deliv

ered

to th

em, a

nd th

e su

ppor

t sys

tem

s av

aila

ble

to th

em. P

atie

nt e

duca

tion

can

be im

prov

ed th

roug

h th

e st

anda

rdis

atio

n of

a C

KD c

urric

ulum

and

the

esta

blis

hmen

t of a

pat

ient

-HC

T pa

rtner

ship

. Con

side

ratio

n of

eac

h pa

tient

’s un

ique

situ

atio

n an

d va

lues

will

allo

w e

duca

tiona

l cha

lleng

es to

be

iden

tified

and

ove

rcom

e, a

chie

ving

in

form

ed, s

hare

d de

cisi

on m

akin

g.

Educ

atio

n by

te

am, m

ater

ials

an

d sm

all g

roup

se

ssio

ns

Evid

ence

Tab

le :

Soci

etal

impl

icat

ions

(PAT

IEN

TS’ S

ATIS

FAC

TIO

N)

Que

stio

n : W

hat a

re th

e so

ciet

al im

plic

atio

ns o

f Pre

-dia

lysi

s Ed

ucat

ion

Prog

ram

me

for a

dvan

ced

CKD

pat

ient

s?

83



Evid

ence

Tab

le :

Soci

etal

impl

icat

ions

(PAT

IEN

TS A

ND

STA

FF IN

SIG

HTS

)Q

uest

ion

: Wha

t are

the

soci

etal

impl

icat

ions

of P

re-d

ialy

sis

Educ

atio

n Pr

ogra

mm

e fo

r adv

ance

d C

KD p

atie

nts?

Bibl

iogr

aphi

c C

itatio

nSt

udy

Type

/Met

hods

LEN

umbe

r of

Patie

nts

& Pa

tient

C

hara

cter

istic

Inte

rven

tion

Com

paris

onLe

ngth

of

Follo

w U

p O

utco

me

Mea

sure

s/Ef

fect

Siz

eG

ener

al

Com

men

ts

1. C

ombe

s G

, Se

in K

, Alle

n K.

How

doe

s pr

e-di

alys

is

educ

atio

n ne

ed

to c

hang

e?

Find

ings

from

a

qual

itativ

e st

udy

with

sta

ff an

d pa

tient

s. B

MC

N

ephr

ol.

2017

;18(

1):3

34.

UK

Qua

litat

ive

stud

y

Obj

ectiv

eTo

repo

rt fin

ding

s re

leva

nt to

PD

E fro

m a

larg

er m

ixed

m

etho

ds s

tudy

, pro

vidi

ng in

sigh

ts in

to w

hat s

taff

and

patie

nts

thin

k ne

eds

to im

prov

e.

Met

hods

-Mix

ed m

etho

ds w

as u

sed

to lo

ok a

t qua

ntita

tive

chan

ges

in h

ome

dial

ysis

upt

ake

rate

s an

d qu

alita

tive

case

stu

dies

to e

xplo

re b

arrie

rs a

nd s

ucce

ss fa

ctor

s fo

r hom

e di

alys

is-F

our h

ospi

tal r

enal

uni

ts, s

elec

ted

from

sev

en W

est

Mid

land

s un

its-P

atie

nt p

opul

atio

n w

as d

ialy

sis

patie

nts

aged

18+

st

artin

g th

eir c

urre

nt tr

eatm

ent w

ithin

12

mon

ths,

-Sem

i stru

ctur

ed o

ne-to

-one

inte

rvie

ws

wer

e un

derta

ken

with

dia

lysi

s pa

tient

s an

d cl

inic

al a

nd

man

ager

ial s

taff

-For

pat

ient

s, th

e to

pic

guid

e co

vere

d:

v

how

pat

ient

s ca

me

to b

e on

dia

lysi

s;

v

expe

rienc

es o

f pre

-dia

lysi

s an

d di

alys

is

path

way

s;

v

sugg

estio

ns fo

r im

prov

emen

t.

-For

sta

ff, th

e to

pic

guid

e co

vere

d:

v

curre

nt p

ract

ice,

v

how

wel

l the

pre

-dia

lysi

s an

d di

alys

is

path

way

s w

ork;

v

how

the

team

had

bee

n w

orki

ng to

in

crea

se u

ptak

e of

hom

e di

alys

is;

v

sugg

estio

ns fo

r im

prov

emen

t

- If p

atie

nts/

sta

ff di

d no

t spo

ntan

eous

ly ta

lk a

bout

th

e pr

e-di

alys

is p

erio

d, th

ey w

ere

prom

pted

with

an

open

-end

ed q

uest

ion

abou

t how

trea

tmen

t dec

isio

ns

wer

e m

ade

-Sem

i-stru

ctur

ed q

ualit

ativ

e te

leph

one

inte

rvie

ws

wer

e un

derta

ken

with

20–

25 p

atie

nts

per s

ite u

ntil

satu

ratio

n w

as a

chie

ved.

-S

taff

popu

latio

n w

as c

linic

al s

taff

wor

king

with

CKD

st

age

5 pa

tient

s an

d m

anag

eria

l sta

ff.

-Sem

i-stru

ctur

ed q

ualit

ativ

e fa

ce-to

-face

inte

rvie

ws

wer

e un

derta

ken

on-s

ite w

ith 2

0–30

sta

ff pe

r site

unt

il sa

tura

tion

was

ach

ieve

d.

-Inte

rvie

ws

last

ed fo

r 30–

60 m

in a

nd w

ere

unde

rtake

n in

priv

ate

with

onl

y th

e in

terv

iew

er a

nd in

terv

iew

ee

pres

ent

-All

inte

rvie

ws

wer

e au

dio

reco

rded

and

wer

e tra

nscr

ibed

ver

batim

by

a sp

ecia

list t

rans

crip

tion

team

. -T

rans

crip

ts w

ere

chec

ked

by re

sear

cher

s bu

t not

pa

rtici

pant

s-T

he w

ritte

n an

d au

dio-

visu

al P

DE

mat

eria

ls u

sed

in

each

site

wer

e al

so re

view

ed-D

ata

was

ana

lyse

d us

ing

them

atic

fram

ewor

k an

alys

is.

Sem

i-st

ruct

ured

in

terv

iew

s in

fo

ur h

ospi

tals

w

ith 9

6 cl

inic

al a

nd

man

ager

ial

staf

f and

93

dia

lysi

s pa

tient

s

Pre-

dial

ysis

ed

ucat

ion

(PD

E)

Form

al P

DE

in a

ll fo

ur s

ites

incl

uded

:

-one

or m

ore

one-

to-o

ne

sess

ions

with

a

spec

ialis

t nu

rse;

-a g

roup

in

form

atio

n se

ssio

n,

incl

udin

g ta

lks

from

pat

ient

s on

RRT

; -a

nd w

ritte

n m

ater

ials

/D

VDs

whi

ch

patie

nts

took

ho

me.

-In s

ever

al

site

s,

spec

ialis

t nu

rses

un

derto

ok

hom

e vi

sits

w

here

they

di

scus

sed

treat

men

t op

tions

with

pa

tient

s.

-Doc

tors

als

o di

scus

sed

treat

men

t op

tions

with

pa

tient

s du

ring

out-p

atie

nt

appo

intm

ents

.

Res

ults

:-M

ost s

taff

mad

e fa

vour

able

com

men

ts a

bout

PD

E an

d va

lued

the

role

of s

peci

alis

t nur

sing

sta

ff in

ed

ucat

ing

and

supp

ortin

g pa

tient

s’ tre

atm

ent d

ecis

ions

. -M

ost p

atie

nts

reca

lled

taki

ng u

p pa

rt or

all

of th

e fo

rmal

PD

E on

offe

r and

repo

rted

findi

ng it

hel

pful

ov

eral

l. -3

them

es re

late

d to

impr

ovin

g PD

E id

entifi

ed:

v

sub-

optim

al e

duca

tion;

v

diffe

rent

per

spec

tives

bet

wee

n pa

tient

s an

d st

aff;

v

influ

ence

of p

atie

nt e

xper

ienc

e

a. S

ub-o

ptim

al e

duca

tion

Res

tric

ted

rang

e of

teac

hing

mat

eria

ls a

nd m

etho

dsv

In m

akin

g tre

atm

ent d

ecis

ions

, som

e pa

tient

s fe

lt th

ey u

nabl

e to

use

info

rmat

ion

give

n be

caus

e th

e hi

gh v

olum

e an

d co

mpl

exity

of i

nfor

mat

ion

mea

nt

v

From

sta

ff pe

rspe

ctiv

e, w

ritte

n m

ater

ials

wer

e de

sign

ed s

o th

at p

atie

nts

had

info

rmat

ion

to

take

hom

e an

d co

nsid

er o

ver t

ime.

v

How

ever

, it s

eem

ed th

at s

ome

patie

nts

wer

e un

able

to ta

ke a

dvan

tage

of t

his

posi

tive

inte

ntio

nv

Anot

her p

ersp

ectiv

e on

teac

hing

mat

eria

ls c

ame

from

pat

ient

s w

ho th

ough

t tha

t the

y w

ere

not ‘

real

’ eno

ugh,

and

stru

ggle

d to

app

ly th

e in

form

atio

n to

thei

r ow

n liv

es.

v

Seei

ng d

iffer

ent t

reat

men

ts b

eing

und

erta

ken

by re

al p

atie

nts

wer

e al

l sug

gest

ed a

s w

ays

of im

prov

ing

the

educ

atio

n

-Thi

s su

gges

ts th

at p

atie

nts

wou

ld b

enefi

t fro

m th

e us

e of

a w

ider

rang

e of

teac

hing

met

hods

, inc

ludi

ng

inte

ract

ive

met

hods

.B

ias

in th

e pr

esen

tatio

n of

info

rmat

ion

and

trea

tmen

t opt

ions

v

Som

e pa

tient

s th

ough

t tha

t all

treat

men

t opt

ions

wer

e pr

esen

ted

fairl

y an

d w

ith e

qual

em

phas

is, o

ther

s fe

lt no

t all

optio

ns h

ad b

een

pres

ente

d to

them

and

that

they

had

onl

y fo

und

out a

bout

via

ble

alte

rnat

ives

onc

e th

ey w

ere

on d

ialy

sis.

v

Som

e of

thes

e pa

tient

s th

ough

t tha

t opp

ortu

nitie

s to

talk

to p

atie

nts

alre

ady

on

trea

tmen

t mig

ht h

ave

help

ed to

giv

e th

em a

mor

e ba

lanc

ed v

iew

of w

hat l

ife o

n di

alys

is

mig

ht b

e lik

e.

v

Staf

f wer

e al

so a

war

e of

the

pote

ntia

l for

bia

sv

How

ever

, all

staf

f gro

ups

thou

ght t

hat t

he fi

rst c

onve

rsat

ion

that

doc

tors

hav

e w

ith p

atie

nts

abou

t tre

atm

ent o

ptio

ns is

cru

cial

in in

fluen

cing

trea

tmen

t cho

ice

b. D

iffer

ent p

ersp

ectiv

es b

etw

een

patie

nts

and

staf

f Th

e im

port

ance

of i

nfor

mal

edu

catio

nv

Staf

f wer

e le

ss a

war

e th

an p

atie

nts

of h

ow in

form

al s

taff-

patie

nt c

onve

rsat

ions

can

in

fluen

ce p

atie

nts’

treat

men

t dec

isio

n-m

akin

g.

v

Som

e pa

tient

s m

ay h

ave

atyp

ical

exp

erie

nces

or b

e bi

ased

aga

inst

cer

tain

trea

tmen

ts

Educ

atio

n on

e to

one

se

ssio

ns

+ gr

oup

sess

ions

+

writ

ten

mat

eria

ls

84


Bibl

iogr

aphi

c C

itatio

nSt

udy

Type

/Met

hods

LEN

umbe

r of P

atie

nts

& Pa

tient

Cha

ract

eris

ticIn

terv

entio

nC

ompa

rison

Leng

th o

f Fo

llow

Up

Out

com

e M

easu

res/

Effe

ct S

ize

Gen

eral

C

omm

ents

1. V

an d

en B

osch

J,

War

ren

DS,

Rut

herfo

rd

PA. R

evie

w o

f pr

edia

lysi

s ed

ucat

ion

prog

ram

s: a

nee

d fo

r st

anda

rdiz

atio

n. P

atie

nt

Pref

er A

dher

ence

. 20

15;9

:127

9-12

91.

Syst

emat

ic re

view

Obj

ectiv

e:

To re

view

evi

denc

e on

effe

ctiv

e co

mpo

nent

s of

pre

-dia

lysi

s ed

ucat

ion

prog

ram

mes

as

rela

ted

to m

odal

ity c

hoic

e an

d se

lect

ed c

linic

al

outc

omes

.

Met

hod:

-Sys

tem

atic

sea

rch

was

per

form

ed o

n Pu

bMed

M

EDLI

NE,

Coc

hran

e Li

brar

y, an

d O

vid

(from

Ja

nuar

y 1,

199

5 to

Dec

embe

r 31,

201

3)

-Incl

usio

n cr

iteria

app

lied:

v

Adul

ts o

nly

v

Pre-

dial

ysis

edu

catio

n fo

r CKD

pa

tient

s st

age

III, I

V, a

nd V

v

Plan

ned

star

t pat

ient

s, u

npla

nned

st

art p

atie

nts,

and

pat

ient

s on

di

alys

is, i

e, in

cide

nt a

nd p

reva

lent

pa

tient

s.v

Det

aile

d de

scrip

tion

of p

rogr

amm

ev

Mul

tiple

ses

sion

sv

Mul

tidis

cipl

inar

y pr

ogra

mm

e in

volv

ing

phys

icia

ns, n

urse

s,

diet

icia

ns, e

tc.

-Out

com

es in

clud

ed:

v

Dia

lysi

s m

odal

ity c

hoic

e an

d th

e nu

mbe

rs o

f pat

ient

s ch

oosi

ng e

ach

mod

ality

v

Any

clin

ical

out

com

e as

soci

ated

w

ith p

re-d

ialy

sis

educ

atio

n v

Hea

lth-re

late

d qu

ality

of l

ife

v

Mea

sure

s as

soci

ated

with

pat

ient

ch

oice

v

Fina

ncia

l im

pact

of p

atie

nts

choo

sing

mor

e ho

me

ther

apie

s v

Patie

nt s

atis

fact

ion

-Lite

ratu

re a

lso

revi

ewed

for a

ny in

form

atio

n on

pr

oces

ses,

pat

hway

s, a

nd o

rgan

izat

ion

of th

e pr

e-di

alys

is e

duca

tion

prog

ram

mes

I29

rele

vant

stu

dies

:19

qua

si-e

xper

imen

tal

desi

gn10

nar

rativ

e re

view

s

-19

stud

ies

wer

e an

alys

ed fo

r effe

ctiv

e co

mpo

nent

s of

pre

-di

alys

is e

duca

tion

prog

ram

me

-Des

crip

tions

of

the

educ

atio

nal

proc

ess

varie

d an

d in

clud

ed in

divi

dual

an

d gr

oup

educ

atio

n,

mul

tidis

cipl

inar

y in

terv

entio

n, a

nd v

aryi

ng

dura

tion

and

frequ

ency

of

ses

sion

s.

Pre-

dial

ysis

ed

ucat

ion

prog

ram

sR

esul

ts

Patie

nt k

now

ledg

e-4

of 1

9 qu

asi-e

xper

imen

tal s

tudi

es

repo

rted

on m

easu

res

of p

atie

nt

know

ledg

e.

v

Gom

ez e

t al.

(199

9)v

King

et a

l. (2

008)

v

Klan

g et

al.

(199

9)v

Man

ns e

t al.

(200

5)

-All

repo

rted

high

er le

vels

of k

now

ledg

e of

end

-sta

ge re

nal d

isea

se a

nd o

f di

ffere

nt tr

eatm

ent o

ptio

ns fo

r pat

ient

s re

ceiv

ing

pre-

dial

ysis

edu

catio

n co

mpa

red

to u

nedu

cate

d pa

tient

s.

Mos

tly w

ithou

t co

ntro

l gro

up

Evid

ence

Tab

le :

Effe

ctiv

enes

s Q

uest

ion

: How

effe

ctiv

e is

Pre

-dia

lysi

s Ed

ucat

ion

Prog

ram

me

for a

dvan

ced

CKD

pat

ient

s?

85



Evid

ence

Tab

le :

Psyc

holo

gica

l/Soc

ieta

l im

plic

atio

ns (P

ATIE

NTS

’ KN

OW

LED

GE)

Que

stio

n : W

hat a

re th

e ps

ycho

logi

cal/s

ocie

tal i

mpl

icat

ions

of P

re-d

ialy

sis

Educ

atio

n Pr

ogra

mm

e fo

r adv

ance

d C

KD p

atie

nts?

Bibl

iogr

aphi

c C

itatio

nSt

udy

Type

/Met

hods

LEN

umbe

r of

Patie

nts

& Pa

tient

C

hara

cter

istic

Inte

rven

tion

Com

paris

onLe

ngth

of

Follo

w U

p O

utco

me

Mea

sure

s/Ef

fect

Siz

eG

ener

al

Com

men

ts

2. D

angu

ilan

R A

, Cab

anay

an-

Cas

asol

a C

B, E

vang

elis

ta

N N

et a

l. An

edu

catio

n an

d co

unse

ling

prog

ram

fo

r chr

onic

kid

ney

dise

ase:

st

rate

gies

to im

prov

e pa

tient

kn

owle

dge.

Kid

ney

Inte

rnat

iona

l Su

pple

men

ts.2

013;

3(2)

:215

-218

.

Philip

pine

s

Pre-

and

pos

t-int

erve

ntio

n st

udy

Obj

ectiv

e:To

revi

ew th

e ef

ficac

y of

pre

-dia

lysi

s ed

ucat

ion

prog

ram

me

and

coun

sellin

g pr

ogra

m in

impr

ovin

g ch

roni

c ki

dney

dis

ease

(CKD

) kno

wle

dge

Met

hods

:-In

cide

nt C

KD p

atie

nts

not y

et o

n R

RT fr

om J

une

2009

to

Feb

ruar

y 20

10 a

nsw

ered

que

stio

nnai

res

deve

lope

d to

det

erm

ine

heal

th-s

eeki

ng b

ehav

iour

, per

ceiv

ed, a

nd

actu

al C

KD k

now

ledg

e.-A

n ev

alua

tion

tool

was

adm

inis

tere

d be

fore

and

afte

r the

ed

ucat

ion

mod

ules

to d

eter

min

e its

effi

cacy

in im

prov

ing

CKD

kno

wle

dge

-Tra

ined

CKD

edu

cato

rs, a

nur

se a

nd a

psy

chol

ogis

t, co

nduc

ted

stru

ctur

ed e

duca

tiona

l mod

ules

acc

ordi

ng to

C

KD s

tage

-Afte

r eac

h m

odul

e pa

tient

s w

ere

inst

ruct

ed to

retu

rn a

fter

ever

y ou

t-pat

ient

follo

w-u

p fo

r com

plet

ion

of th

e ed

ucat

ion

mod

ules

and

furth

er c

ouns

ellin

g-P

atie

nts

wer

e gi

ven

take

-hom

e m

ater

ials

afte

r eac

h vi

sit

and

wer

e in

stru

cted

abo

ut th

e re

com

men

ded

com

plet

ion

times

for t

he m

odul

es:

v

with

in 3

–4 m

onth

s fo

r CKD

sta

ges

1–3,

v

with

in 1

–2 m

onth

s fo

r CKD

sta

ge 4

, v

and

with

in 1

mon

th fo

r CKD

sta

ge 5

,

in o

rder

to im

prov

e th

e re

tent

ion

of th

e in

form

atio

n pr

ovid

ed fo

r thi

s gr

oup

-Eva

luat

ion

tool

s co

nsis

ted

of fo

ur s

elf-a

dmin

iste

red

ques

tionn

aire

s:

v

a 30

-item

tool

: 22

item

s on

gen

eral

CKD

kn

owle

dge

and

8 ite

ms

on R

RT;

v

thre

e 10

-item

tool

s co

verin

g le

sson

s le

arne

d fro

m e

ach

of th

e th

ree

CKD

Clin

ic v

isits

; v

an 8

-item

tool

on

patie

nts’

heal

th-c

are

seek

ing

beha

viou

r prio

r to

cons

ulta

tion

at

our h

ospi

tal;

v

and

a 4-

item

que

stio

nnai

re o

n pe

rcei

ved

CKD

kno

wle

dge.

-The

30-

item

tool

eva

luat

ed p

atie

nts’

base

line

or a

ctua

l kn

owle

dge

(ove

rall

pre-

test

) and

aga

in a

fter t

he p

atie

nt

com

plet

ed a

ll th

e ed

ucat

ion

mod

ules

(ove

rall

post

-test

). -T

he 1

0-ite

m to

ols

wer

e ad

min

iste

red

afte

r eac

h vi

sit t

o re

info

rce

the

less

ons

lear

ned.

-Ove

rall

pre-

and

pos

t-tes

t sco

res

wer

e co

mpa

red

to

dete

rmin

e if

ther

e w

as im

prov

emen

t in

the

patie

nt’s

CKD

kn

owle

dge.

II-3

299

CKD

pa

tient

s:

-60%

mal

es,

-mea

n ag

e 49

ye

ars,

-a

nd 3

7%

wer

e hi

gh-

scho

ol

grad

uate

s.

-60%

CKD

St

age

5 an

d 19

% S

tage

4.

-Onl

y a

few

wer

e fro

m e

arlie

r st

ages

: 10%

St

age

3, 1

%

Stag

e 2,

and

2%

Sta

ge 1

.

Pre-

dial

ysis

ed

ucat

ion

prog

ram

me

Stru

ctur

ed

educ

atio

nal

mod

ules

acc

ordi

ng

to C

KD s

tage

:-C

KD

sta

ges

1–3:

Vi

sit 1

—m

odul

es

1–5

on re

nal

anat

omy

and

func

tion,

type

s of

kid

ney

failu

re,

CKD

aet

iolo

gy, a

nd

stag

es, s

igns

and

sy

mpt

oms,

nut

ritio

n,

and

med

icat

ions

pr

escr

ibed

to C

KD

patie

nts.

Vi

sit 2

—m

odul

es

6–8

on la

bora

tory

te

sts

in C

KD,

met

abol

ic e

ffect

s of

CKD

suc

h as

an

aem

ia, b

one

dise

ase,

and

oth

er

com

plic

atio

ns,

pres

erva

tion

of

kidn

ey fu

nctio

n.

Visi

t 3—

mod

ules

9–

13 o

n R

RT

optio

ns a

nd

treat

men

t cos

t.

-CK

D s

tage

s 4

and

5:

Visi

t 1—

mod

ules

1–

5 an

d 9–

13.

Thes

e w

ere

disc

usse

d si

mul

tane

ousl

y to

gi

ve th

e pa

tient

s tim

e to

mak

e an

in

form

ed d

ecis

ion

abou

t the

trea

tmen

t op

tions

for t

heir

illnes

s, s

ince

at

this

late

sta

ge th

e re

quire

men

t for

R

RT w

as im

min

ent.

Visi

t 2—

mod

ules

6–

8.

6 m

onth

sR

esul

ts:

Perc

eive

d C

KD k

now

ledg

ev

Maj

ority

(34%

) had

no

know

ledg

e ab

out C

KD, 3

0%

had

little

, 28%

som

e, a

nd 8

% c

laim

ed a

gre

at d

eal o

f kn

owle

dge.

v

Mos

t wer

e un

awar

e of

RRT

opt

ions

; 70%

, 64.

2%,

and

54.2

% h

ad n

o kn

owle

dge

of p

erito

neal

dia

lysi

s,

haem

odia

lysi

s, a

nd tr

ansp

lant

atio

n, re

spec

tivel

y. v

No

sign

ifica

nt a

ssoc

iatio

n be

twee

n C

KD s

tage

and

kn

owle

dge

of R

RT.

Actu

al C

KD k

now

ledg

ev

90%

sco

red

<60%

on

gene

ral k

now

ledg

e of

CKD

v

90%

sco

red

<50%

on

the

actu

al k

now

ledg

e of

ESR

D

treat

men

t opt

ions

. v

Amon

g pa

tient

s w

ho c

laim

ed th

at th

ey h

ad e

xten

sive

C

KD k

now

ledg

e, a

ll sc

ored

<60

% in

the

actu

al

know

ledg

e qu

estio

nnai

re.

Effic

acy

of e

duca

tion

mod

ules

v

Onl

y 83

out

of 2

99 p

atie

nts

(28%

) com

plet

ed th

e m

odul

es w

ithin

6-m

onth

follo

w-u

p pe

riod.

v

Mos

t pat

ient

who

did

not

com

plet

e th

e pr

ogra

m

(83%

), no

long

er p

rese

nted

for f

/up

afte

r 3 m

onth

s (p

oor c

ompl

ianc

e du

e to

fina

ncia

l, ca

me

only

fo

r dia

gnos

is, t

oo il

l to

retu

rn fo

r f/u

p, la

ck o

f un

ders

tand

ing,

low

prio

rity

give

n)v

Sign

ifica

nt in

crea

se in

mea

n ov

eral

l pre

-test

sc

ores

of C

KD

kno

wle

dge

from

7.0

±5.1

1 (m

axim

um

scor

e 30

) to

23.0

±4.5

(max

imum

sco

re 3

0) p

oint

s in

th

e ov

eral

l pos

t-tes

t, w

ith 6

9% (5

7 ou

t of 8

3 pa

tient

s)

scor

ing

≥75%

(P<0

.000

01).

v

An in

crea

se in

num

ber o

f pat

ient

s (5

8%) w

ho g

aine

d kn

owle

dge

on th

e di

ffere

nt a

spec

ts o

f CKD

afte

r co

mpl

etin

g th

e ed

ucat

iona

l mod

ules

exc

ept f

or th

e to

pic

on s

igns

and

sym

ptom

s of

CKD

. v

Patie

nts

aged

<50

yea

rs h

ad s

igni

fican

tly h

ighe

r pre

- an

d po

st-te

st re

sults

com

pare

d to

old

er a

ge g

roup

s (P

=0.0

07).

v

Pre-

test

sco

res

wer

e si

gnifi

cant

ly h

ighe

r in

at le

ast

high

sch

ool g

radu

ates

(P<0

.03)

v

Sex

and

CKD

sta

ge w

ere

not a

ssoc

iate

d w

ith b

ette

r te

st s

core

s.

Aut

hors

con

clus

ion:

The

CKD

edu

catio

n an

d co

unse

lling

prog

ram

was

effe

ctiv

e in

im

prov

ing

patie

nts’

know

ledg

e of

thei

r dis

ease

. Eld

erly

and

non

-hi

gh-s

choo

l gra

duat

es o

f a fi

nanc

ially

dis

adva

ntag

ed p

opul

atio

n m

ay n

eed

spec

ially

des

igne

d ed

ucat

ion

mod

ules

to im

prov

e th

eir

com

preh

ensi

on

72%

(2

15 p

ts) d

id n

ot

com

plet

e th

e m

odul

es

Educ

atio

n by

mul

tiple

in

divi

dual

ised

se

ssio

ns

86


Evid

ence

Tab

le :

Psyc

holo

gica

l im

plic

atio

ns (A

DH

EREN

CE,

DEP

RES

SIO

N A

ND

AN

XIET

Y LE

VEL)

Que

stio

n : W

hat a

re th

e ps

ycho

logi

cal i

mpl

icat

ions

of P

re-d

ialy

sis

Educ

atio

n Pr

ogra

mm

e fo

r adv

ance

d C

KD p

atie

nts?

Bibl

iogr

aphi

c C

itatio

nSt

udy

Type

/Met

hods

LEN

umbe

r of P

atie

nts

& Pa

tient

Cha

ract

eris

ticIn

terv

entio

nC

ompa

rison

Leng

th o

f Fo

llow

Up

Out

com

e M

easu

res/

Effe

ct S

ize

Gen

eral

C

omm

ents

1. G

arcí

a-Ll

ana

H,

Rem

or E

, del

Pes

o G

et

al.

Mot

ivat

iona

lin

terv

iew

ing

prom

otes

adh

eren

ce

and

impr

oves

w

ellb

eing

in p

re-

dial

ysis

pat

ient

sw

ith a

dvan

ced

chro

nic

kidn

ey

dise

ase.

J

Clin

Psy

chol

M

ed S

ettin

gs.

2014

;21(

1):1

03-1

5.

Spai

n

Pre-

and

pos

t- in

terv

entio

n st

udy

Obj

ectiv

e:To

det

erm

ine

the

effe

ctiv

enes

s of

an

indi

vidu

al, p

re-d

ialy

sis

inte

rven

tion

prog

ram

in

term

s of

adh

eren

ce, e

mot

iona

l sta

te

and

heal

th re

late

d qu

ality

of l

ife (H

RQ

L) in

pr

e-di

alys

is p

atie

nts

with

adv

ance

d ch

roni

c ki

dney

dis

ease

Met

hod:

-All

52 p

atie

nts

in th

e st

udy

sam

ple

met

the

follo

win

g el

igib

ility

crite

ria:

v

olde

r tha

n 18

yea

rs;

v

diag

nosi

s of

adv

ance

d C

KD

unde

r pre

-dia

lysi

s tre

atm

ent;

v

GFR

of 2

0 m

l/min

or l

ess;

v

no D

SM IV

psy

chia

tric

diag

nose

s;

v

able

to re

ad a

nd s

peak

Sp

anis

h;

v

and

had

acce

pted

and

sig

ned

an in

form

ed c

onse

nt fo

rm to

pa

rtici

pate

in th

e pr

ogra

m

-10

patie

nts

drop

ped

out o

f the

pro

gram

for

the

follo

win

g re

ason

s:v

1 pa

tient

cha

nged

hos

pita

l,v

5 pa

tient

s in

itiat

ed H

D,

v

3 pa

tient

s in

itiat

ed P

D,

v

1 pa

tient

die

d

-42

patie

nts

com

plet

ed th

e pr

ogra

m a

nd

wer

e in

clud

ed in

the

anal

ysis

-Ass

essm

ents

wer

e ad

min

iste

red

prio

r to

the

inte

rven

tion

and

afte

r the

inte

rven

tion.

-Pat

ient

s w

ere

eval

uate

d fo

r adh

eren

ce,

depr

essi

on, a

nxie

ty a

nd H

RQ

L w

ith

stan

dard

ised

sel

f-rep

ort q

uest

ionn

aire

s.

-Bio

chem

ical

mar

kers

wer

e al

so re

gist

ered

.

II-3

42 p

atie

nts

adva

nced

ch

roni

c ki

dney

dis

ease

in

clud

ed

-Ave

rage

age

68y

ears

old

-Mos

t wer

e m

en

(60%

), m

arrie

d (5

9%),

unem

ploy

ed (6

9%)

Pre-

dial

ysis

in

terv

entio

n pr

ogra

m

-6-m

onth

indi

vidu

al

prog

ram

was

m

anag

ed b

y a

train

ed h

ealth

ps

ycho

logi

st.

-Eve

ry p

atie

nt

ente

ring

the

stud

y at

tend

ed

thei

r reg

ular

ap

poin

tmen

ts

with

nep

hrol

ogis

t, th

e nu

rse

and

nutri

tioni

st

-Eac

h pa

tient

re

ceiv

ed 6

in

divi

dual

mon

thly

fa

ce-to

-face

se

ssio

ns (9

0-m

in

dura

tion)

with

hea

lth

psyc

holo

gist

-Eve

ry s

essi

on h

ad

two

dist

inct

aim

s:a.

firs

t 45

min

of

sess

ions

pro

vide

d tra

inin

g in

ski

lls

that

faci

litat

ed th

e pa

tient

’s ad

apta

tion

to th

e AC

KD a

nd it

s tre

atm

ents

, b.

last

45

min

he

lped

impr

ove

adhe

renc

e to

m

edic

atio

n th

roug

h m

otiv

atio

nal

inte

rvie

win

g

6 m

onth

sR

esul

ts:

Afte

r the

inte

rven

tion,

pat

ient

s re

porte

d si

gnifi

cant

ly h

ighe

r lev

els

of

adhe

renc

e, lo

wer

dep

ress

ion

and

anxi

ety

leve

ls, a

nd b

ette

r HR

QL

(i.e.

, ge

nera

l hea

lth a

nd e

mot

iona

l rol

e do

mai

ns).

Adhe

renc

e le

vel

v

Patie

nts

repo

rted

bette

r adh

eren

ce to

trea

tmen

ts a

fter t

he

indi

vidu

al s

essi

on p

rogr

am a

s m

easu

red

by th

e ad

here

nce

to tr

eatm

ent s

urve

y (H

ighe

r sco

re in

dica

tes

grea

ter d

egre

e of

trea

tmen

t adh

eren

ce)

Mea

n sc

ore

(SD

) ran

ge;

Pre-

test

27.

12 (2

.74)

, 22–

33 v

s Po

st-te

st 3

1.45

(2.0

5),

26–3

3 (P

<0.0

01) a

nd b

y th

e M

oris

ky–G

reen

–Lev

ine

Test

(p

<0.0

01).

v

Rat

es o

f non

-adh

eren

ce to

ora

l med

icat

ion,

as

mea

sure

d by

the

Mor

isky

–Gre

en–L

evin

e Te

st, d

ecre

ased

sig

nific

antly

fro

m b

efor

e th

e in

terv

entio

n (2

9 %

) to

afte

r the

inte

rven

tion

(16%

).

Dep

ress

ion

and

anxi

ety

leve

lv

Dep

ress

ion

leve

ls s

igni

fican

tly d

ecre

ased

from

bef

ore

(M

= 10

.92)

to a

fter (

M =

8.8

6) th

e in

terv

entio

n,

v

as d

id a

nxie

ty le

vels

(fr

om M

= 1

8.22

to M

= 1

4.41

)

Hea

lth-re

late

d qu

ality

of l

ife (H

RQ

L)

v

Hea

lth-re

late

d qu

ality

of l

ife (H

RQ

L) s

core

s on

the

Gen

eral

H

ealth

sub

scal

e in

crea

sed

sign

ifica

ntly

(fro

m M

= 3

7.19

to

M =

45.

97),

as d

id s

core

s on

the

Emot

iona

l Rol

e su

bsca

le

(from

M =

71.

82 to

M =

77.

57).

v

No

effe

cts

wer

e fo

und

in o

ther

dom

ains

of H

RQ

L (p

hysi

cal

func

tion,

phy

sica

l rol

e, b

odily

pai

n, v

italit

y, so

cial

func

tion,

m

enta

l hea

lth)

Clin

ical

mar

kers

of a

dvan

ced

CKD

pat

ient

s in

pre

-dia

lysi

s be

fore

and

afte

r th

e pr

ogra

mv

Bioc

hem

ical

par

amet

ers

wer

e co

ntro

lled

sign

ifica

ntly

bet

ter

afte

r the

inte

rven

tion,

exc

ept f

or iP

TH.

Aut

hors

con

clus

ion:

Thes

e fin

ding

s hi

ghlig

ht th

e po

tent

ial b

enefi

t of a

pply

ing

indi

vidu

al

psyc

ho-e

duca

tiona

l int

erve

ntio

n pr

ogra

ms

base

d on

mot

ivat

iona

l in

terv

iew

ing

and

usin

g th

e st

ages

of c

hang

e m

odel

to p

rom

ote

adhe

renc

e an

d w

ellb

eing

in a

dvan

ced

CKD

pat

ient

s.

Smal

l sam

ple

size

,

Educ

atio

n by

mul

tiple

in

divi

dual

se

ssio

ns

87



Evid

ence

Tab

le :

Cos

t-effe

ctiv

enes

sQ

uest

ion

: Is

Pre-

dial

ysis

edu

catio

n pr

ogra

mm

e co

st-e

ffect

ive

for a

dvan

ced

CKD

pat

ient

s?Bi

blio

grap

hic

Cita

tion

Stud

yTy

pe/M

etho

dsLE

Num

ber o

f Pat

ient

s &

Patie

nt C

hara

cter

istic

Inte

rven

tion

Com

paris

onLe

ngth

of

Follo

w U

p O

utco

me

Mea

sure

s/Ef

fect

Siz

eG

ener

al

Com

men

ts

1. Y

u YJ

, Wu

IW,

Hua

ng C

Y et

al.

Mul

tidis

cipl

inar

y pr

edia

lysi

s ed

ucat

ion

redu

ced

the

inpa

tient

an

d to

tal m

edic

alco

sts

of th

e fir

st 6

m

onth

s of

dia

lysi

s in

in

cide

nt h

emod

ialy

sis

patie

nts.

PLo

SO

ne.

2014

;9(1

1):e

1128

20.

Taiw

an

Ran

dom

ised

con

trolle

d tri

al w

ith c

ost-a

naly

sis

Obj

ectiv

e:To

ana

lyse

the

med

ical

exp

endi

ture

and

util

isat

ion

incu

rred

durin

g th

e fir

st

6 m

onth

s of

dia

lysi

s in

itiat

ion

in 4

25 in

cide

nt h

aem

odia

lysi

s pa

tient

s w

ho

wer

e ra

ndom

ised

into

mul

tidis

cipl

inar

y pr

e-di

alys

is e

duca

tion

(MPE

) and

no

n-M

PE g

roup

s be

fore

reac

hing

ESR

D.

Met

hods

:-A

tota

l of 2

280

patie

nts

wer

e en

rolle

d in

the

stud

y an

d w

ere

rand

omly

di

vide

d in

to th

e M

PE g

roup

and

the

non-

MPE

gro

up b

y us

ing

a ra

ndom

ta

ble

at s

tudy

ent

ry.

-445

pat

ient

s re

ache

d ES

RD

nee

ding

hae

mod

ialy

sis

afte

r a m

ean

follo

w-u

p of

33±

2.6

mon

ths:

v

232

patie

nts

in th

e M

PE g

roup

v

213

patie

nts

in th

e no

n-M

PE g

roup

--Pro

gram

con

sist

ed o

f an

inte

grat

ed c

ours

e in

volv

ing

indi

vidu

al le

ctur

es o

n re

nal h

ealth

, del

iver

ed b

y th

e ca

se-m

anag

emen

t nur

se-L

ectu

res

focu

sed

on n

utrit

ion,

life

styl

e, n

ephr

otox

in a

void

ance

, die

tary

pr

inci

ples

, and

pha

rmac

olog

ical

regi

men

s.

-Cas

e-m

anag

emen

t nur

se c

onta

cted

the

patie

nts

to e

nsur

e tim

ely

follo

w-u

p-F

or S

tage

IV C

KD p

atie

nts;

the

prog

ram

incl

uded

v

disc

ussi

ons

on th

e m

anag

emen

t of c

ompl

icat

ions

ass

ocia

ted

with

CKD

, v

indi

catio

ns o

f ren

al re

plac

emen

t the

rapy

, v

and

eval

uatio

n of

vas

cula

r or p

erito

neal

acc

ess.

-For

Sta

ge V

CKD

: v

mon

itor f

or ti

mel

y in

itiat

ion

of re

nal r

epla

cem

ent t

hera

pies

, v

the

care

of v

ascu

lar o

r per

itone

al a

cces

s,

v

dial

ysis

-ass

ocia

ted

com

plic

atio

ns,

v

and

regi

stra

tion

for i

nclu

sion

in th

e re

nal t

rans

plan

tatio

n w

aitin

g lis

t.

-All

patie

nts

rece

ived

die

tary

cou

nsel

ling

bian

nual

ly fr

om a

die

titia

n.

-Cas

e-m

anag

emen

t nur

se o

ften

cont

acte

d th

e pa

rtici

pant

s by

tele

phon

e to

enc

oura

ge th

em to

info

rm th

eir n

ephr

olog

ists

of t

heir

sym

ptom

s an

d to

re

info

rce

the

impo

rtanc

e of

med

ical

vis

its.

-The

MPE

pro

gram

was

dis

cont

inue

d on

ce re

nal r

epla

cem

ent t

hera

pies

w

ere

initi

ate

-Med

ical

exp

endi

ture

and

util

izat

ion

in th

e fir

st 6

mon

ths

of in

itiat

ion

of h

aem

odia

lysi

s in

thes

e 44

5 pa

tient

s w

ere

accu

rate

ly re

cord

ed a

nd

com

pare

d be

twee

n M

PE a

nd n

on-M

PE p

atie

nts

-Med

ical

ser

vice

util

isat

ion

was

cal

cula

ted

as th

e fre

quen

cy o

f out

patie

nt

visi

ts a

nd th

e fre

quen

cy a

nd le

ngth

of h

ospi

taliz

atio

n.-M

edic

al s

ervi

ce e

xpen

ditu

res

incl

uded

out

patie

nt e

xpen

ditu

res

(all

cost

s in

clud

ing

phys

icia

ns’ a

nd n

ursi

ng fe

es, e

xam

inat

ions

, sur

gery

, and

m

edic

atio

n) a

nd in

patie

nt e

xpen

ditu

res

(all

cost

s in

clud

ing

labo

rato

ry

test

ing,

imag

ing

test

ing,

med

icat

ions

, sur

gery

and

con

sulti

ng, w

ard

and

adm

inis

trativ

e, n

asog

astri

c tu

be fe

edin

g, a

nd h

aem

odia

lysi

s fe

es)

-The

exp

endi

ture

s fo

r eac

h pa

rtici

pant

wer

e to

talle

d to

com

pute

the

sum

of

ambu

lato

ry a

nd in

patie

nt m

edic

al s

ervi

ce u

tiliz

atio

n co

sts

and

expe

nditu

res.

-A

naly

sis

of c

osts

onl

y in

clud

ed th

ose

med

ical

cos

ts fo

r whi

ch o

ur h

ospi

tals

m

ade

reim

burs

emen

t cla

ims

to th

e N

HI.

-The

sal

arie

s, o

verh

eads

, and

adm

inis

trativ

e co

sts

of th

e ca

re te

am w

ere

not i

nclu

ded.

II-2

445

adva

nced

CKD

pa

tient

s: v

232

patie

nts

in M

PE

grou

p

v

213

patie

nts

in n

on-

MPE

gr

oup

-Mea

n ag

e of

pat

ient

s w

as 6

3.8±

13.2

yea

rs,

and

221

(49.

7%) o

f th

em w

ere

men

-Mea

n eG

FR 7

.49

± 3.

1 M

PE g

roup

and

mea

n eG

FR 7

.87±

3.6

in th

e no

n-M

PE g

roup

Mul

tidis

cipl

inar

y pr

e-di

alys

is

educ

atio

n (M

PE)

-MPE

pro

gram

co

mpr

ised

a

nurs

e fo

r cas

e m

anag

emen

t, so

cial

wor

kers

, di

etiti

ans,

ha

emod

ialy

sis,

pe

riton

eal

dial

ysis

pat

ient

vo

lunt

eers

and

10

nep

hrol

ogis

ts

Non

-MPE

-Sam

e gr

oup

of

neph

rolo

gist

s in

stru

cted

pa

tient

s ab

out

rena

l fun

ctio

n,

eval

uatio

n of

la

bora

tory

dat

a,

and

clin

ical

in

dica

tors

of

chro

nic

rena

l fa

ilure

, and

st

rate

gies

for i

ts

mx

and

tx-G

ener

al

prin

cipl

es o

f HD

an

d PD

exp

lain

ed

whe

n pa

tient

s at

St

age

4 C

KD

6 m

onth

s of

dia

lysi

s in

itiat

ion

Res

ults

:H

ospi

talis

atio

n an

d va

scul

ar a

cces

s re

late

d su

rger

iesv

MPE

pat

ient

s ha

d si

gnifi

cant

ly fe

wer

an

d sh

orte

r len

gths

of h

ospi

talis

atio

n (m

edia

n (IQ

R) 0

(15)

vs.

8 (2

7) d

ays,

p<

0.00

1] th

an n

on-M

PE p

atie

nts.

v

Eigh

ty-e

ight

(37.

9%) p

atie

nts

in

the

MPE

gro

up h

ad a

t lea

st o

ne

hosp

italis

atio

n, c

ompa

red

with

127

pa

tient

s (5

9.6%

) in

the

non-

MPE

gr

oup

(p<0

.001

).v

Parti

cipa

tion

in M

PE p

rogr

am re

duce

d ca

rdio

vasc

ular

hos

pita

lisat

ion

in fi

rst

6 m

onth

s po

st d

ialy

sis

(18.

53%

vs.

29

.58%

, p=0

.007

). v

MPE

gro

up w

ere

mor

e lik

ely

to

have

few

er v

ascu

lar a

cces

s re

late

d su

rger

ies

durin

g th

e fir

st a

dmis

sion

[3

5 pa

tient

s (1

5.09

%) v

s. 5

5 (2

5.82

%),

p=0.

005]

.

Med

ical

Cos

tv

MPE

pat

ient

s te

nded

to h

ave

low

er

tota

l med

ical

cos

t in

the

first

6

mon

ths

afte

r hae

mod

ialy

sis

initi

atio

n (9

147.

6 ±

0.1

USD

/pat

ient

vs.

111

90.6

±

0.1

USD

/pat

ient

, p=0

.003

)v

med

ical

cos

t of i

npat

ient

ser

vice

was

si

gnifi

cant

ly lo

wer

in M

PE p

atie

nts

mea

n 22

61.8

± 5

635.

8) U

SD/p

atie

nt

in M

PE p

atie

nts

vs. m

ean

3698

.8

± 55

40.9

) USD

/pat

ient

in n

on-M

PE

patie

nts,

resp

ectiv

ely,

p<0.

001,

ow

ing

to re

duce

d ca

rdio

vasc

ular

ho

spita

lisat

ion

and

vasc

ular

acc

ess–

rela

ted

surg

erie

s.

v

The

decr

ease

d in

patie

nt a

nd to

tal

med

ical

cos

t ass

ocia

ted

with

MPE

w

ere

inde

pend

ent o

f pat

ient

s’ de

mog

raph

ic c

hara

cter

istic

s,

conc

omita

nt d

isea

se, b

asel

ine

bioc

hem

istry

and

use

of d

oubl

e-lu

men

ca

thet

er a

t ini

tiatio

n of

hem

odia

lysi

s.

Aut

hors

con

clus

ion:

Parti

cipa

tion

of m

ultid

isci

plin

ary

educ

atio

n in

pr

e-di

alys

is p

erio

d w

as in

depe

nden

tly a

ssoc

iate

d w

ith re

duct

ion

in th

e in

patie

nt a

nd to

tal m

edic

al

expe

nditu

res

of th

e fir

st 6

mon

ths

post

-dia

lysi

s ow

ing

to d

ecre

ased

inpa

tient

ser

vice

util

izat

ion

seco

ndar

y to

car

diov

ascu

lar c

ause

s an

d va

scul

ar

acce

ss–r

elat

ed s

urge

ries.

Educ

atio

n by

indi

vidu

al

sess

ions

with

te

am

88


Evid

ence

Tab

le :

Cos

t-effe

ctiv

enes

sQ

uest

ion

: Is

Pre-

dial

ysis

edu

catio

n pr

ogra

mm

e co

st-e

ffect

ive

for a

dvan

ced

CKD

pat

ient

s?Bi

blio

grap

hic

Cita

tion

Stud

yTy

pe/M

etho

dsLE

Num

ber o

f Pa

tient

s &

Patie

nt

Cha

ract

eris

tic

Inte

rven

tion

Com

paris

onLe

ngth

of

Follo

w U

p O

utco

me

Mea

sure

s/Ef

fect

Siz

eG

ener

al

Com

men

ts

2. W

ei S

Y,

Cha

ng Y

Y, M

au

LW e

t al.

Chr

onic

kid

ney

dise

ase

care

pr

ogra

m

impr

oves

qua

lity

of p

re-e

nd-

stag

e re

nal

dise

ase

care

an

d re

duce

s m

edic

al c

osts

. N

ephr

olog

y (C

arlto

n).

2010

;15(

1):1

08-

115.

Taiw

an

Ret

rosp

ectiv

e co

hort

stud

yw

ith c

ost-a

naly

sis

Obj

ectiv

e:

To e

valu

ate

the

effe

ctiv

enes

s of

CKD

car

e pr

ogra

m o

n pr

e-en

d-st

age

rena

l dis

ease

(E

SRD

) car

e

Met

hod:

-Tot

al o

f 140

inci

dent

ESR

D p

atie

nts,

who

sta

rted

HD

in th

e pe

riod

from

Aug

ust

2004

to J

uly

2005

from

the

two

stud

y ho

spita

ls w

ere

retro

spec

tivel

y re

view

ed-S

tudy

sub

ject

s di

vide

d in

to:

v

‘CK

D C

are

Gro

up’

(71

inci

dent

HD

pat

ient

s w

ho re

ceiv

ed th

e C

KD c

are

prog

ram

in

terv

entio

n fo

r at l

east

6 m

onth

s be

fore

initi

atio

n of

HD

), v

‘Nep

hrol

ogis

t Car

e G

roup

’ (69

inci

dent

HD

pat

ient

s w

ho w

ere

care

d fo

r by

neph

rolo

gist

s al

one

for a

t lea

st 6

mon

ths

befo

re in

itiat

ion

of

dial

ysis

)

-CKD

Car

e Pr

ogra

m in

clud

ed n

ephr

olog

ists

, ren

al n

urse

s an

d di

etic

ians

as

the

core

m

embe

rs o

f a m

ultid

isci

plin

ary

team

resp

onsi

ble

for c

arin

g fo

r pat

ient

s at

diff

eren

t C

KD s

tage

s.

-CKD

pat

ient

s, in

vite

d to

join

the

care

pro

gram

by

the

neph

rolo

gist

, wer

e re

ferre

d to

w

ell-t

rain

ed re

nal n

urse

s an

d di

etic

ians

. -D

iffer

ent g

oals

and

edu

catio

n co

nten

ts, a

ccor

ding

to s

tage

s of

CKD

and

pre

-set

cl

inic

al p

roto

cols

, wer

e pl

anne

d an

d de

liver

ed s

yste

mat

ical

ly a

ppro

xim

atel

y 30

–45

min

at e

ach

visi

t. -E

very

pat

ient

rece

ived

follo

w-u

p vi

sits

with

clin

ical

eva

luat

ion,

labo

rato

ry

exam

inat

ions

, nur

sing

and

die

tary

edu

catio

n, w

hich

was

take

n ev

ery

3 m

onth

s fo

r C

KD s

tage

s 3

and

4, a

nd e

very

1–2

mon

ths

for s

tage

5 p

atie

nts.

-Prim

ary

goal

s in

clud

ed:

v

slow

ing

dow

n th

e de

terio

ratio

n of

rena

l fun

ctio

n,

v

early

pre

para

tions

for d

ialy

sis,

v

redu

cing

of r

isk

of c

ompl

icat

ions

,v

and

ensu

ring

the

proc

ess

of e

nter

ing

dial

ysis

sm

ooth

ly a

nd s

afel

y.

-Nep

hrol

ogis

t Car

e G

roup

wer

e al

l tre

ated

by

neph

rolo

gist

s fro

m th

e sa

me

depa

rtmen

t, bu

t the

y di

d no

t rec

eive

nur

sing

edu

catio

n an

d di

etar

y co

unse

lling

by

CKD

nur

ses

and

diet

icia

ns.

-Prin

cipl

e of

CKD

car

e, in

clud

ing

med

icat

ions

and

ear

ly p

repa

ratio

n of

vas

cula

r ac

cess

, wer

e ro

utin

ely

deliv

ered

to p

atie

nts

by th

e ne

phro

logi

sts

-End

-poi

nt o

f obs

erva

tion

was

dia

lysi

s in

itiat

ion.

-Q

ualit

y in

dica

tors

for e

valu

atio

n in

clud

ed:

v

Stat

us o

f rec

ombi

nant

hum

an e

ryth

ropo

ietin

(rH

uEPO

) tre

atm

ent,

v

Vasc

ular

acc

ess

prep

arat

ion

v

Hos

pita

lisat

ion

for i

nitia

tion

of d

ialy

sis

whi

ch w

ere

com

pare

d be

twee

n tw

o gr

oups

-Med

ical

ser

vice

s ut

ilisat

ion

and

cost

s w

ere

anal

ysed

from

6 m

onth

s be

fore

initi

atio

n of

dia

lysi

s to

the

time

of th

e fir

st H

D, a

nd th

e tim

e pe

riods

wer

e di

vide

d in

to ‘6

m

onth

s be

fore

dia

lysi

s’, ‘

at d

ialy

sis

initi

atio

n’, a

nd th

e su

m o

f the

two

perio

ds a

s th

e ‘to

tal p

erio

d of

obs

erva

tion’

. -In

dica

tors

of s

ervi

ce u

tilis

atio

n in

clud

ed:

v

Aver

age

outp

atie

nt v

isits

bef

ore

dial

ysis

, v

Freq

uenc

y of

hos

pita

lisat

ion

befo

re d

ialy

sis,

v

Perc

enta

ge o

f pat

ient

hos

pita

lisat

ion

at d

ialy

sis

initi

atio

n,

v

Aver

age

leng

th o

f sta

y (L

OS)

- Mea

sure

men

t of c

osts

in th

is s

tudy

onl

y in

clud

ed d

irect

med

ical

cos

ts fo

r whi

ch th

e st

udy

hosp

itals

mad

e cl

aim

s to

the

NH

I for

reim

burs

emen

t-S

alar

ies,

ove

rhea

ds a

nd in

dire

ct c

osts

of t

he c

are

team

wer

e no

t inc

lude

d

II-2

140

inci

dent

ES

RD

pa

tient

s w

ho s

tarte

d di

alys

is a

nd

divi

ded

into

:

-CKD

Car

e G

roup

(71

patie

nts)

-Nep

hrol

ogis

t C

are

Gro

up

(69

patie

nts)

-Mea

n eG

FR,

mL/

min

per

1.

73 m

2 3.

8 ±

1.3

in C

KD

Car

e G

roup

, 3.

7 ±

1.5

in

Nep

hrol

ogis

t ca

re g

roup

CKD

car

e pr

ogra

m

Nep

hrol

ogis

t C

are

Gro

up6

mon

ths

befo

re d

ialy

sis

Res

ults

:

Qua

lity

of p

re-E

SRD

car

ePr

epar

atio

n at

dia

lysi

s in

itiat

ion:

EPO

trea

tmen

t-N

o si

gnifi

cant

diff

eren

ce o

n pe

rcen

tage

s of

pat

ient

s w

ho

rece

ived

rHuE

PO tr

eatm

ent a

t ini

tiatio

n of

HD

and

the

aver

age

mon

thly

dos

age

of rH

uEPO

Prep

arat

ions

at d

ialy

sis

initi

atio

n: v

ascu

lar a

cces

s-V

ascu

lar a

cces

s ha

d be

en c

reat

ed b

efor

e H

D in

57.

7%

of p

atie

nts

in th

e C

KD C

are

Gro

up v

s. o

nly

37.7

% o

f the

N

ephr

olog

ist C

are

Gro

up (P

= 0

.017

). -P

erce

ntag

e of

pat

ient

s w

ho s

tarte

d H

D w

ith c

reat

ed v

ascu

lar

acce

ss w

ithou

t the

inse

rtion

of d

oubl

e lu

men

cat

hete

r was

50

.7%

in th

e C

KD C

are

Gro

up, v

s. 2

9.0%

in th

e N

ephr

olog

ist

Car

e G

roup

(P

= 0

.009

)

Prep

arat

ions

at d

ialy

sis

initi

atio

n: h

ospi

talis

atio

n-P

erce

ntag

e of

pat

ient

s w

ho w

ere

not h

ospi

talis

ed fo

r ini

tiatio

n of

HD

was

40.

8% in

CKD

Car

e G

roup

, vs.

18.

8% in

the

Nep

hrol

ogis

t Car

e G

roup

(P <

0.0

05).

-Mos

t pat

ient

s in

Nep

hrol

ogis

t Car

e G

roup

(81.

2%) h

ad th

eir

first

HD

thro

ugh

inpa

tient

HD

.

Freq

uenc

y of

ser

vice

s ut

ilisat

ion

Perio

d of

‘6 m

onth

s be

fore

dia

lysi

s’-M

ore

frequ

ent o

utpa

tient

vis

its in

CKD

Car

e G

roup

(9.9

± 5

.5

vs 5

.5 ±

5.5

P<0

.001

), bu

t the

freq

uenc

y of

hos

pita

lisat

ion

and

leng

th o

f sta

y ha

d no

diff

eren

ce w

ith N

ephr

olog

ist C

are

Gro

up.

Perio

d of

‘at d

ialy

sis

initi

atio

n’-L

ower

per

cent

age

of h

ospi

talis

atio

n fo

r ini

tiatio

n of

dia

lysi

s in

th

e C

KD C

are

Gro

up (5

9.2%

vs

81.2

%, P

= 0.

005)

, -L

engt

h of

sta

y in

hos

pita

l muc

h sh

orte

r for

CKD

Car

e G

roup

.(6

.6da

ys ±

16.

2 vs

. 16.

2day

s ±

16.2

, P

<0.0

01)

Med

ical

cos

tsv

Parti

cipa

tion

in C

KD c

are

prog

ram

, tho

ugh

with

hi

gher

cos

ts d

urin

g th

e 6

mon

ths

befo

re d

ialy

sis

($U

S142

8 +/

- 204

9 vs

US$

675

+/- 9

62/p

atie

nt,

P <

0.00

1),

v

was

sig

nific

antly

ass

ocia

ted

with

low

er m

edic

al

cost

s at

dia

lysi

s in

itiat

ion

($U

S942

+/-

1941

vs

$US2

410

+/- 2

481/

patie

nt, P

< 0

.001

) v

and

for t

he to

tal p

erio

d of

obs

erva

tion

($U

S267

4 +/

- 278

0 vs

$U

S387

2 +/

- 327

0/pa

tient

, P =

0.0

09)

-The

cos

t-sav

ing

effe

ct c

ame

thro

ugh

the

early

pre

para

tion

of v

ascu

lar a

cces

s an

d th

e la

ck o

f hos

pita

lizat

ion

at d

ialy

sis

initi

atio

n.

Aut

hors

con

clus

ion:

CKD

car

e pr

ogra

m s

ucce

ssfu

lly h

elps

pre

-ESR

D p

atie

nts

to p

roce

ed in

to d

ialy

sis

initi

atio

n w

ith b

ette

r pre

pare

dnes

s,

whi

ch re

duce

s th

e pr

obab

ility

of e

mer

genc

y di

alys

is th

roug

h ho

spita

lizat

ion

and

save

s he

ath

dolla

rs fr

om C

KD to

ESR

D

Educ

atio

n by

mul

tiple

in

divi

dual

se

ssio

ns

89



Appendix 5LIST OF EXCLUDED STUDIES


2. de Oliveira JGR, Askari M, Fahd MGN et al. Chronic Kidney Disease and the Use of Social Media as Strategy for Health Education in Brazil. Studies in health technology and informatics. 2019;264:1945-1946.

3. Cassidy BP, Getchell LE, Harwood L et al. Barriers to Education and Shared Decision Making in the Chronic Kidney Disease Population: A Narrative Review. Canadian Journal of Kidney Health & Disease.5:2054358118803322.

4. Chen NH, Lin YP, Liang SY et al. Conflict when making decisions about dialysis modality. Journal of Clinical Nursing.27(1-2):e138-e146.

5. Noorkhairina SS, Norhasyimah G, ‘Ain IN et al. Educational Needs Assessment and the Management of Chronic Kidney Disease in a Malaysian Setting: A Review. Int J Care Scholars. 2018;1(1):34-38.

6. Ng CY, Lee ZS, Goh KS. Cross-sectional study on knowledge of chronic kidney disease among medical outpatient clinic patients. The Medical journal of Malaysia. 2016;71(3):99-104.

7. Javaid MM, Khan BA et al. Sustained Increase in Peritoneal Dialysis Prevalence through a Structured PD Initiation Service. Peritoneal Dialysis International.38(5):374-376.

8. Li WY, Wang YC, Hwang SJ et al. Comparison of outcomes between emergent-start and planned-start peritoneal dialysis in incident ESRD patients: a prospective observational study. BMC Nephrology.18(1):359.

9. Berkhout-Byrne N, Gaasbeek A, Mallat MJK et al. Regret about the decision to start dialysis: a cross-sectional Dutch national survey. Netherlands Journal of Medicine.75(6):225-234.

10. Lovell S, Walker RJ, Schollum JB et al. To dialyse or delay: a qualitative study of older New Zealanders’ perceptions and experiences of decision-making, with stage 5 chronic kidney disease. BMJ Open.7(3):e014781.

11. Winterbottom A, Bekker H, Mooney A. Dialysis modality selection: physician guided or patient led? Clin Kidney J. 2016;9(6):823-825.

12. Pugh J, Aggett J, Annwen G et al. Frailty and comorbidity are independent predictors of outcome in patients referred for pre-dialysis education. Clinical Kidney Journal. 2016;9:324-329.

13. Molnar AO, Hiremath S, Brown PA, Akbari A. Risk factors for unplanned and crash dialysis starts: a protocol for a systematic review and meta-analysis. Syst Rev. 2016;5(1):117.

14. Begum R, Khan TM, Ming LC. Burden of chronic kidney disease and its risk factors in Malaysia. Journal of epidemiology and global health. 2016;6(4):325-326.

15. Chiang PC, Hou JJ, Jong IC et al. Factors Associated with the Choice of Peritoneal Dialysis in Patients with End-Stage Renal Disease. BioMed Research International.2016:5314719.

16. Phuphaibul R, Teamprathom W, Puckpinyo A et al. Can a community-based multidisciplinary intervention effectively restore renal function? A non-randomized clinical trial. Nursing & Health Sciences.18(4):533-538.

17. Bavanandan S, Ahmad G, Teo AH, Chen L, Liu FX. Budget Impact Analysis of Peritoneal Dialysis versus Conventional In-Center Hemodialysis in Malaysia. Value in health regional issues. 2016;9:8-14.

18. Jha V, Wang AY, Wang H. The impact of CKD identification in large countries: the burden of illness. Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association. 2012;27 Suppl 3:iii32-38.

19. Salman M, Khan AH, Adnan AS et al. Attributable causes of chronic kidney disease in adults: a five-year retrospective study in a tertiary-care hospital in the northeast of the Malaysian Peninsula. Sao Paulo medical journal = Revista paulista de medicina. 2015;133(6):502-509.

20. Brown PA, Akbari A, Molnar AO et al. Factors Associated with Unplanned Dialysis Starts in Patients followed by Nephrologists: A Retropective Cohort Study. PloS one.

90


2015;10(6):e0130080.21. Karkar A, Hegbrant J, Strippoli GF. Benefits and implementation of home hemodialysis: A

narrative review. Saudi Journal of Kidney Diseases & Transplantation.26(6):1095-1107.22. Hussain JA, Flemming K, Murtagh FE et al. Patient and health care professional decision-

making to commence and withdraw from renal dialysis: a systematic review of qualitative research. Clinical Journal of The American Society of Nephrology: CJASN.10(7):1201-1215.

23. Pajek J. Overcoming the Underutilisation of Peritoneal Dialysis. BioMed Research International.2015:431092.

24. Winterbottom AE, Gavaruzzi T, Mooney A et al. Patient Acceptability of the Yorkshire Dialysis Decision Aid (YoDDA) Booklet: A Prospective Non-Randomized Comparison Study Across 6 Predialysis Services. Peritoneal Dialysis International.36(4):374-381.

25. Fortnum D, Ludlow M, Morton RL. Renal unit characteristics and patient education practices that predict a high prevalence of home-based dialysis in Australia. Nephrology (Carlton, Vic). 2014;19(9):587-593.

26. Smart NA, Dieberg G, Ladhani M et al. Early referral to specialist nephrology services for preventing the progression to end-stage kidney disease. The Cochrane database of systematic reviews. 2014(6):Cd007333.

27. Walker RC, Marshall MR. Increasing the uptake of peritoneal dialysis in New Zealand: a national survey. Journal of Renal Care.40(1):40-48.

28. Davis JS, Zuber K. Implementing patient education in the CKD clinic. Adv Chronic Kidney Dis. 2013;20(4):320-325.

29. Hooi LS, Ong LM, Ahmad G et al. A population-based study measuring the prevalence of chronic kidney disease among adults in West Malaysia. Kidney Int. 2013;84(5):1034-1040.

30. Kurella Tamura M, Li S, Chen SC et al. Educational programs improve the preparation for dialysis and survival of patients with chronic kidney disease. Kidney Int. 2014;85(3):686-692.

31. Fabian J, Van Jaarsveld K, Maher HA et al. Early survival on maintenance dialysis therapy in South Africa: evaluation of a pre-dialysis education programme. Clinical & Experimental Nephrology.20(1):118-125.

32. Griva K HLZ, Yuanhong Lai A et al. Perspectives of patients, families, and health care professionals on decision-making about dialysis modality-the good, the bad, and the misunderstandings! Perit Dial Int. 2013;33(3): 280–289.

33. Strand H, Parker D. Effects of multidisciplinary models of care for adult pre-dialysis patients with chronic kidney disease: a systematic review. International journal of evidence-based healthcare. 2012;10(1):53-59.

34. Harwood L, Clark AM. Understanding pre-dialysis modality decision-making: A meta-synthesis of qualitative studies. International journal of nursing studies. 2013;50(1):109-120.

35. Chan YM, Zalilah MS, Hii SZ. Determinants of compliance behaviours among patients undergoing hemodialysis in Malaysia. PloS one. 2012;7(8):e41362.

36. Chanouzas D, Ng KP, Fallouh B et al. What influences patient choice of treatment modality at the pre-dialysis stage? Nephrology Dialysis Transplantation.27(4):1542-1547.

37. Maffei S, Savoldi S, Triolo G. When should commence dialysis: focusing on the predialysis condition. Nephrourology Monthly.5(2):723-727.

38. Castledine C, Gilg J, Rogers C et al. UK Renal Registry 13th Annual Report (December 2010): Chapter 15: UK renal centre survey results 2010: RRT incidence and use of home dialysis modalities. Nephron.119 Suppl 2:c255-267.

39. Bastos MG, Kirsztajn GM. Chronic kidney disease: importance of early diagnosis, immediate referral and structured interdisciplinary approach to improve outcomes in patients not yet on dialysis. Jornal Brasileiro de Nefrologia.33(1):93-108.

40. Demoulin N, Beguin C, Labriola L, Jadoul M. Preparing renal replacement therapy in stage 4 CKD patients referred to nephrologists: a difficult balance between futility and insufficiency. A cohort study of 386 patients followed in Brussels. Nephrology Dialysis Transplantation.26(1):220-226.

41. Chiou CP, Chung YC. Effectiveness of multimedia interactive patient education on knowledge, uncertainty and decision-making in patients with end-stage renal disease. Journal of Clinical Nursing.21(9-10):1223-1231.

91



42. Fadem SZ, Walker DR, Abbott G et al. Satisfaction with renal replacement therapy and education: the American Association of Kidney Patients survey. Clinical journal of the American Society of Nephrology : CJASN. 2011;6(3):605-612.

43. Covic A, Bammens B, Lobbedez T et al. Educating end-stage renal disease patients on dialysis modality selection: clinical advice from the European Renal Best Practice (ERBP) Advisory Board. Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association. 2010;25(6):1757-1759.

44. Morton RL, Howard K, Webster AC et al. Patient information about options for treatment: Methods of a national audit of information provision in chronic kidney disease. Nephrology.15(6):649-652.

45. Jennette C, Derebail V, Baldwin J et al. Renal replacement Therapy and Barriers to choice: using a Mixed Methods approach to explore the Patient’s Perspective. The Journal of Nephrology Social Work.32:15-26.

46. Yen M, Huang JJ, Teng HL. Education for patients with chronic kidney disease in Taiwan: a prospective repeated measures study. Journal of Clinical Nursing.17(21):2927-2934.

47. Chen YR, Yang Y, Wang SC et al. Effectiveness of multidisciplinary care for chronic kidney disease in Taiwan: a 3-year prospective cohort study. Nephrology Dialysis Transplantation.28(3):671-682.

48. Van Biesen W, Verbeke F, Vanholder R. We don’t need no education ... . (Pink Floyd, The Wall ) Multidisciplinary predialysis education programmes: pass or fail? Nephrology Dialysis Transplantation.24(11):3277-3279.

49. Mason J, Khunti K, Stone M et al. Educational interventions in kidney disease care: a systematic review of randomized trials. American journal of kidney diseases : the official journal of the National Kidney Foundation. 2008;51(6):933-951.

50. Thomas M. Pre-dialysis education for patients with chronic kidney disease. Nephrology. 2007;12:S46-S48.

51. Elizabeth JL, Hanna L, Walker D, Milo E, Koupatsiaris T, De Vos JY, et al. Pre-dialysis education and patient choice. J Ren Care. 2006;32(4):214-220.

52. Owen JE, Walker RJ, Edgell L et al. Implementation of a pre-dialysis clinical pathway for patients with chronic kidney disease. International Journal for Quality in Health Care.18(2):145-151.

53. Devins GM, Mendelssohn DC, Barre PE et al. Predialysis psychoeducational intervention extends survival in CKD: a 20-year follow-up. American journal of kidney diseases : the official journal of the National Kidney Foundation. 2005;46(6):1088-1098.

54. Goldstein M, Yassa T, Dacouris N et al. Multidisciplinary predialysis care and morbidity and mortality of patients on dialysis. American journal of kidney diseases : the official journal of the National Kidney Foundation. 2004;44(4):706-714.

55. Hostetter T, Gladstone EH, Sica DA. National Kidney Disease Education Program in 2004: a program in evolution. Journal of Clinical Hypertension.6(6):299-302.

56. Devins GM, Mendelssohn DC, Barre PE et al. Predialysis psychoeducational intervention and coping styles influence time to dialysis in chronic kidney disease. American journal of kidney diseases : the official journal of the National Kidney Foundation. 2003;42(4):693-703.

57. Golper T. Patient education: can it maximize the success of therapy? Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association. 2001;16 Suppl 7:20-24.

58. Devins GM, Hollomby DJ, Barre PE, Mandin H, Taub K, Paul LC, et al. Long-term knowledge retention following predialysis psychoeducational intervention. Nephron. 2000;86(2):129-134.

59. Harris LE, Luft FC, Rudy DW, Kesterson JG, Tierney WM. Effects of multidisciplinary case management in patients with chronic renal insufficiency. The American journal of medicine. 1998;105(6):464-471.

92


Appendix 6 SURVEY QUESTIONNAIRE Title of Survey: Pre-dialysis Education Programme for Chronic Kidney Disease (CKD) Patients: How would you like it to be?

Available at: https://tinyurl.com/predialysissurvey

Purpose of survey

The purpose of this survey is to understand the preferences of patients, carers and healthcare staff for pre-dialysis education so that we can develop a programme that better meet their needs. This survey would take no more than 10 minutes.

Informed consent

Your participation in this survey is voluntary. You may choose not to participate. If you decide to participate in this survey, you may withdraw at any time. If you decide not to participate in this survey or if you withdraw from participating at any time, you will not be penalized. Your responses in this survey will be anonymous and confidential.

I have read the above information and I voluntarily agree to be part of this survey and to provide necessary information to the doctor, nurse, or other staff members, as requested.

Yes No

Kindly fill in your name.………………………...

Section 1 of 3: Socio-demographics

1. How old are you?………………………...

2. What is your gender?MaleFemaleOther: ………………………...

3. What is your level of education?Primary schoolSecondary schoolTertiary education (college, university)None

93



Section 2 of 3: Patients’ or carers’ treatment experience

4. Are you currently a patient diagnosed with chronic kidney disease (CKD); a carer of family member/ partner/ child diagnosed with CKD or a part of healthcare team for CKD patients?

PatientCarerHealthcare staff (skip question 6 and 7)

5. (If patient or carer) Which hospital are you (or the patient you are caring for) currently under follow-up?

(If healthcare staff) Where do you work?Hospital Kuala LumpurHospital AmpangHospital Tengku Ampuan Rahimah, Klang

6. Did you (or the patient you are caring for) receive pre-dialysis education prior to initiation of dialysis?

Yes No

7. How long have you (or the patient you are caring for) been on dialysis?< 6 months6-12 months12-18 months> 18 monthsNot on dialysis

Section 3 of 3: Patients’ or carers’ preferences

8. Who do you think should be the one to provide pre-dialysis education to CKD patients? (You may select one or more)

Doctor NurseMedical assistantOther: ………………………...

9. Do you think CKD patients would also benefit from receiving counselling or advice from the following healthcare professionals? (You may select one or more)

DieticianPsychologistPharmacistSocial workerPatient representativeOther: ………………………...

94


10. What type of information do you think is important for CKD patients to know prior to starting dialysis? (You may select one or more) How dialysis is performed Advantages and disadvantages of each treatment option (dialysis, kidney transplantation, conservative care without dialysis) Side effects of dialysis Costs associated with each treatment option (dialysis, kidney transplantation, conservative care without dialysis) Dietary advice (e.g. what to eat before, during and after dialysis) How to dress for dialysis access How dialysis may affect daily life (family, work, school, or leisure activities) Medications & supplements associated with each treatment option (dialysis, kidney transplantation, conservative care without dialysis) Other: ………………………...

11. How do you think pre-dialysis education should be conducted? Individually (one-to-one) GroupSD session (2-5 people) Group session (5-10 people) Other: ………………………...

12. Should it be conducted in a single session or multiple sessions? One single session with one single educator (for example: doctor or nurse) One single session with multiple educators (for example: doctor, nurse, pharmacist, dietician and psychologist) Multiple sessions with each educator by appointment (for example: doctor, nurse, pharmacist, dietician and psychologist) Multiple sessions with each educator upon request only (for example: doctor, nurse, pharmacist, dietician and psychologist) Other: ………………………...

13. What education material(s) should be included in the pre-dialysis education? (You may select one or more) Leaflet / Pamphlet Audio-visual tools such as videos or slide presentations Information about useful online websites or videos to refer at your own free time Hands-on session to show how each dialysis option works Other: ………………………...

14. How soon do you think CKD patients should start receiving pre-dialysis education prior to dialysis? 1 month before 2 months before 3 months before 5 months before 6 months before Not sure

95



15. How long should each pre-dialysis education session be?< 15 minutes15-30 minutes30-45 minutes45-60 minutes> 60 minutes

16. How frequent do you think pre-dialysis education should be given?Once a monthOnce every 2 monthsOnce every 3 monthsOnce every 6 monthsOnce a yearOther: ………………………...

17. Which of the venue below would be suitable for pre-dialysis education? (You may select one or more)

HospitalCommunity clinicOne-stop centreDialysis centreOther: ………………………...

18. Do you think it would be helpful to be part of a patient support group to discuss about solving problems faced in real life?

YesNoMaybe

19. Do you have any other comments/suggestions to improve pre-dialysis education?……………………….........................................................................................................................……………………………………………………………………………………....................……………………………………………………………………………………..

20. Following pre-dialysis education, do you think it is important that the doctor shares the decision-making about starting dialysis with the patient?

YesNoMaybe

That’s the end of our survey. Thank you for taking the time to complete this survey.

Your contribution is much appreciated!

96


Appendix 7

SUGGESTIONS TO IMPROVE PRE-DIALYSIS EDUCATION PROGRAMME

1. Programme must be well-organised according to planned schedule and shouldac commodate the patient’s schedule so that the patient’s own time is not affected.

2. Emotional and spiritual information or support should be provided.3. Educators must be sensitive and provide more human touch to address patients’

needs and emotions as CKD patients may be fragile and depressed during the pre- dialysis stage.

4. Weekend sessions are preferred to minimise interference with daily work.5. Family members should attend pre-dialysis education session with patients toimprove

understanding of the disease and treatment. Family members are very important for patients throughout the CKD journey.

6. There should be consistent attendance from the same family member/partner or friend.7. Carers need to know how to help the patient make decisions.8. Education should be extended to carers as they should know about symptoms of kidney

failure.9. Education to carers should be provided.10. Educators must be qualified and knowledgeable to teach and answer questions correctly.11. Nurses must have sufficient experience before educating patients.12. Good communication between healthcare staff and patients especially before starting

each dialysis is important to ensure accuracy of information such as body weight, dry weight and dietary intake.

13. Prevention of CKD should be included in the module.14. There should be early education on disease progression and preventive measures to

avoid ESRD.15. Counselling by a psychologist can be given by appointment for patients who need it.16. Contents of the module should be comprehensive and include demonstration.17. Pre-dialysis education is very important as it can help patients feel more comfortable to

start dialysis.18. PDEP can be organised with any campaign in other clinics.

KEMENTERIAN KESIHATAN MALAYSIA

Malaysian Health Technology Assessment Section (MaHTAS)Medical Development Division, Ministry og Health Malaysia,

Level 4, Block E1, Complex E, Precint 1,Federal Goverment Administrative Centre

62590, Putrajaya, Malaysia.

Tel: 03-88831229

e ISBN 978-967-2887-12-6

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2020 - Kementerian Kesihatan Malaysia

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