Quality in Health Care 1994;3:79-85

Evaluation of patients' knowledge aboutanticoagulant treatment

Fiona C Taylor, Mary E Ramsay, Grace Tan, John Gabbay, Hannah Cohen

Health CareDevelopment Unit,Academic Departmentof Public Health,St Mary's HospitalMedical School,London W2 1PGMary E Ramsay, lecturerin public health medicineJohn Gabbay, seniorlecturer in public healthmedicine

Research Unit,Royal College ofPhysicians,London NW1 4LEFiona C Taylor, researchassistantGrace Tan, clinicalresearch fellow

Departments ofHaematology,St Mary's HospitalMedical School,London W2 1PG andCentral MiddlesexHospital,London NW1O 7NSHannah Cohen, seniorlecturerCorrespondence to:Ms F C Taylor,Health Care DevelopmentUnit, Academic Departmentof Public Health, CentralMiddlesex Hospital, ActonLane, London NW10 7NS

Accepted for publication23 June 1994

AbstractObjective-To develop a questionnaireto evaluate patients' knowledge ofanticoagulation.Design-Anonymous self completedquestionnaire study based on hospitalanticoagulant guidelines.Setting-Anticoagulant clinic in a 580 beddistrict general hospital in London.Subjects-70 consecutive patients newlyreferred to the anticoagulant clinic over

six months.Main measures-Information received bypatients on six items of anticoagulationcounselling (mode of action of warfarin,adverse effects of over or under anti-coagulation, drugs to avoid, action ifbleeding or bruising occurs, and alcoholconsumption), the source of such infor-mation, and patients' knowledge aboutanticoagulation.Results-Of the recruits, 36(51%) were

male; 38(54%) were aged below 46 years,

22(31%) 46-60, and 10(14%) over 75. 50(71%) questionnaires were returned. Inall, 40 respondents spoke English at homeand six another language. Most patientsreported being clearly advised on five ofthe six items, but knowledge aboutanticoagulation was poor. Few patientscould correctly identify adverse con-

ditions associated with poor control ofanticoagulation: bleeding was identifiedby only 30(60%), bruising by 23(56%), andthrombosis by 18(36%). Only 26(52%)patients could identify an excessive levelof alcohol consumption, and only seven

(14%) could identify three or more selfprescribed agents which may interferewith warfarin.Conclusion-The questionnaire provideda simple method of determining patients'knowledge of anticoagulation, and itsresults indicated that this requiresimprovement.Implications-Patients' responses sug-

gested that advice was not always givenby medical staff, and use of counsellingchecklists is recommended. Reinforce-ment of advice by non-medical coun-

sellors and with educational guides suchas posters or leaflets should be con-

sidered. Such initiatives are currentlybeing evaluated in a repeat survey.(Quality in Health Care 1994;3:79-85)

IntroductionOral anticoagulants, such as warfarin, are

widely used for preventing and treatingvascular and thromboembolic disease. The

therapeutic range is narrow, I and com-plications, such as life-threatening bleedingand re-thrombosis, can occur if patients areover anticoagulated or underanticoagulated.The efficacy of warfarin can be adverselyaffected by many factors, including thepatients' concurrent drug treatment, change indiet or alcohol intake, and physical illness.2 3 Itis therefore essential that patients are welladvised and fully recognise the risks of anti-coagulant treatment. Previous reports indicatethat patients receiving oral anticoagulantscommonly do not know the potential com-plications and risks of their treatment.4 Theobjectives of this study were to develop aquestionnaire to determine patients' reports ofinformation received and to evaluate patients'knowledge of anticoagulation treatment.

MethodsThe study site was a 580 bed district generalhospital with an anticoagulant clinic attendedby over 60 patients a week. The hospital'sguidelines on managing anticoagulation weredrawn up by the consultant haematologist,based on those issued by the British Societyfor Haematology6 and after discussion at thehospital physicians' audit meetings.7 Theyrecommend that patients undergoing anti-coagulant treatment should be given astandard information card8 on anticoagulationand should be counselled by the ward doctoron six items before discharge. These itemsinclude the mode of action of warfarin, adverseeffects associated with over or under anti-coagulation, what drugs to avoid, what actionto take if bleeding or bruising occurs, andalcohol consumption. In addition, the calendarmethod as outlined in the current Departmentof Health anticoagulant treatment booklet9should be explained. This simple method wasdeveloped to improve compliance and entailspatients ticking off on a calendar the days onwhich warfarin is taken. Although not outlinedin the guidelines, doctors in the anticoagulantclinic should reinforce the information onthese six items at the patient's first clinicattendance and should also distribute the anti-coagulant treatment booklet.We designed a questionnaire based on the

six items of advice outlined in the guidelinesfor patients to complete after their firstappointment with the anticoagulant clinic'sdoctor. The questionnaire asked patients forpersonal and clinical details, what informationthey had been given on each of the six items,and the source of this information. Patients'knowledge of the information contained in theDepartment of Health booklet was tested witha "quiz" section with multiple choice questions

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in which patients were asked to tick the true,false, or don't know options. The question-naire was piloted in the clinic, and the finalquestionnaire (appendix 1) was found to besuitable, according to the Fog density index,for use by respondents who had received sixyears of schooling.'0

Seventy consecutive patients newly referredto the anticoagulant clinic were recruited to thestudy over six months. All were given an anony-mous questionnaire by the doctor in the clinicat the first consultation. The doctor explainedthe purpose of the study to the patient, whowas asked to complete the questionnaire athome and return it by post. Reminders weresent out by post two weeks later.

ResultsSTUDY POPULATION

Of the patients recruited to the study,36(51%) were male; 38(54%) were aged lessthan 46 years, 22(31%) were aged 46-60, and10(14%) were aged over 75. Fifty (710%) ofthe 70 questionnaires administered werereturned. Of the 50 respondents, 40(80%)spoke English at home, six (12%) spokeanother language, and four (8%) did notspecify. Nineteen respondents (38%) wereretired, 1 1(22%) were in full time employ-ment, 11 (22%) either were claiming statebenefit or were unemployed, and nine (18%)gave no information. Thirty eight (76%) hadbeen recent inpatients at the study hospitaland six (12%) at another hospital, five (10%)were referred from the outpatient departmentand one (2%) from their general practitioner.

CLINICAL DETAILS

Of the 50 respondents, 29(58%) reportedhaving venous thromboembolic disease, six(12%) heart disease or surgery, five (10%)stroke, eight (16%) multiple or other diag-noses, and two (4%) did not specify.Seventeen (34%) patients had been receivinganticoagulant treatment for fewer than twoweeks, 16(32%) for two to three weeks,and the remaining 17(34%) for more thanfour weeks. In all, 34(68%) of patientsexpressed concern about receiving anti-coagulant treatment. Nineteen (38%) wouldhave liked more medical advice, but onlyfive (26%) felt unable to obtain sufficientmedical advice.

Thirty two (64%) patients reported takingother medicines and of these, eight (16%)were currently taking drugs that can adverselyaffect anticoagulation treatment. These drugshad been self prescribed in one patient,prescribed by other hospital doctors in sixpatients, and by the general practitioner in theremaining patient.

PATIENTS REPORTS OF INFORMATIONRECEIVED

Apart from the calendar method, mostpatients reported receiving clear informationon each of the six items (table 1). Among the38 inpatients in the study hospital, however,only 19(50%) reported having been given an

information card and 10(26%) reported

Table I Patients reporting clear advice given on sixitems from any source (n = 50)

Items No (°0) of patients

Calendar method 22 (44)How warfarin works 38 (76)Action if bleeding or bruising occurs 25 (50)Problems with anticoagulant treatment 31 (62)Drugs to avoid 37 (74)Alcohol 41 (82)

receiving clear advice on three items or morefrom the ward doctor. This compares with19/50(38%) respondents who reportedreceiving such advice from the doctor in theanticoagulant clinic. Of the 50 respondents,only 10(20%) reported other sources of infor-mation, which included ward nurses, otherhospital medical staff, general practitioners,and written literature.

PATIENTS' KNOWLEDGE OF ANTICOAGULATION

Although 46(92%) of patients correctlyanswered that warfarin "thinned" the blood,knowledge of the possible side effects of poorcontrol of anticoagulant treatment was low(table 2). Only 27(54%) patients were able toidentify correctly three or more of the sixgenuine effects from a list of 13 conditions,and 18(36%) chose one or more of the sevenunrelated conditions. In the quiz 33(66%)patients correctly reported that a new treat-ment could affect anticoagulant treatment, butonly 26(52%) knew that changing the dose ofconcurrent tratment could also affect anti-coagulation. Patients' knowledge of selfprescribed treatment which can affect anti-coagulant control was mixed (table 3); from alist of 11 self prescribed agents, only seven(14%) patients were able to identify three ormore of the six agents which could adverselyaffect anticoagulation and, 11(22%) patientsnamed as harmful one or more of the five"safe" agents listed.

Forty one patients reported having beenclearly advised on alcohol (82%), but, only26(52%) patients could correctly identify anexcessive level of alcohol consumption, and19(38%) patients thought that alcohol wouldnot affect anticoagulant treatment.

DiscussionThis study used patients' reports to evaluatethe completeness of counselling about anti-coagulation given at the study hospital and the

Table 2 Patients identifying conditions associated withpoor control of anticoagulant treatment (n = 50)

Condition No (%o) ofpatients

Associated effectsBlood in stools 20 (40)Nose bleeds 26 (52)Prolonged bleeding 30 (60)Bruising 23 (56)Blood in urine 18 (36)Blood clots 18 (36)

Non-associated effectsSleeplessness 5 (10)Weakness 9 (18)Loss of appetite 7 (14)Ringing in the ears 4 (8)Nausea 7 (14)Nervousness 7 (14)High blood pressure 9 (18)

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Table 3 Patients identifying self prescribed agents whichshould be avoided when taking anticoagulants (n = 50)

Self prescribed agent No (Oo) of patients

To be avoidedAspirin 40 (80)Cough medicines 9 (18)Nurofen 11 (22)Codliver oil 4 (8)Garlic capsules 2 (4)Health shop remedies 7 (14)

Ma, be usedVitamin C 0 (0)Throat lozenges 2 (4)Optrex 1 (2)TCP (Trichlorophenol) 0 (0)Antacids* 8 (16)

*The safety of antacids in warfarin treatment is controversial.

outcome of such counselling in terms ofpatients' knowledge. Recent inpatients at thehospital reported receiving little informationon the risks and complications of anti-coagulant treatment from the ward doctors.According to patients' reports, the doctors inthe anticoagulant clinic were better at givingadvice, but as the questionnaire was admin-istered at the first clinic appointment, patientswould be expected to have better recall ofinformation given at this time.

This study also highlights a substantial gapbetween the information patients reportedhaving received and the outcome in terms oftheir knowledge of anticoagulant treatment.For example, even though most patientsreported having been advised on the problemsassociated with oral anticoagulants, only asmall proportion were correctly able toidentify most of the adverse events and somepatients were confused about other sideeffects. This lack of knowledge was apparentdespite virtually all patients knowing thatwarfarin "thins" the blood.

Patients' knowledge about anticoagulationwas disappointing and there are two possibleexplanations for these findings. The first isthat ward doctors at the study hospital are notgiving all the information recommended inthe guidelines. Previous audits of inpatientmanagement and of the referral processshowed poor compliance of ward doctorswith other aspects of the guidelines on anti-coagulant treatment,1 1 12 and compliance withthe recommended counselling may also bepoor. In this study 14% of patients had beenprescribed treatment which can interferewith warfarin, which accords with the resultsof a previous study which showed poorknowledge among doctors of which drugscan interact with oral anticoagulants. A lackof knowledge among medical staff maycontribute to a reluctance to advise patientsabout the risks and complications of anti-coagulation. More widespread disseminationof guidelines to medical staff is required, withspecific instructions on counselling patientsreceiving anticoagulation.The second explanation, supported by the

gap between patients' reports of advicereceived and their knowledge, is that patientsare unable to understand and retain theadvice they are given, as shown in previousstudies.'3 14 The poor quality of doctor patient

communication has been well described inother chronic conditions,15-17 and training incommunication skills for doctors has receivedlittle emphasis in medical schools untilrecently.' More effective communicationarises from understanding patients' expec-tations, involving patients in negotiating theirtreatment plan,'5 and continuity and accessi-bility of staff.'5 Better levels of patientknowledge may also be achieved if informationis reinforced by simple measures such asrepetition or using written material.'9 Theavailability of a non-medical counsellor, suchas a clinical pharmacist or nurse practitioner,has also been shown to increase patients'knowledge about medical treatments.20 2Non-medical staff may be better able to offercontinuing support, to talk with the patient,and to ensure that written information hasbeen read and understood.The relative importance of the two

explanations for the poor level of patients'knowledge was not addressed in this study.That would require independent observationof the consultation or inclusion of the doctors'perspective and would be difficult to replicatein routine practice. Our questionnaire focusedon the patients' perspective and could berepeated at the study hospital to evaluatechanges in practice or adopted for use at othersites.This study's aim was not to relate patients'

levels of knowledge to clinical outcome. A pre-vious small study was unable to demonstrate arelation between a structured programme ofeducation and rate of complications or thera-peutic control.23 Therefore, patient educationforms only one part of effective anticoagulantcontrol; we are currently developing methodsto audit other aspects of management.

RecommendationsTo improve patients' knowledge it is import-ant to focus on the process of giving infor-mation. To increase the number of patientsbeing counselled about anticoagulant treat-ment by ward doctors, the guidelines havebeen disseminated through the computersystem and through the development of con-densed guidelines in the form of practicepoints.24 For doctors in the anticoagulantclinic a checklist for counselling has beenincorporated into the clinic history sheets forall new patients. Doctors often omit importantitems of advice,25 and the checklist can act asan "aide memoire" (appendix 2).To reinforce counselling and to provide on-

going education a trained health care assistantasks each patient attending the anticoagulantclinic five key questions. These questionshighlight the most important potential com-plications; changes in medication, hospitaladmission, episodes of bleeding or bruising,attendances at the accident and emergencydepartment, or forthcoming surgery. Theassistant also distributes and explains writteninformation in the form of a leaflet whichfocuses on these key points.The use of written educational guides may

also successfully alert patients to the possible

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risks and complications of treatment. Suchguides, including posters and leaflets, havebeen instructive in other conditions andpromote positive changes in patients' well-being and improve compliance.18 26 Clearexplanation of the rationale for and potentialproblems with anticoagulant treatment mayhelp to improve patients' compliance withadvice given. For the anticoagulant clinic atthe study hospital, a poster and a patientleaflet based on the information contained inthe Department of Health anticoagulant treat-ment booklet9 have been devised.The questionnaire was successful in

evaluating the level of patients' knowledge

about anticoagulant treatment. A repeat surveyof patients at the anticoagulant clinic is beingperformed to evaluate the effects of changes inpractice at the hospital. The questionnaireproved easy to administer and has beenshortened to concentrate on the importantaspects of education, which are reinforced ateach visit. The method has also been adaptedand is currently being used at other clinic sitesin North West Thames region.

We thank the Research Unit, Royal College of Physicians(London), headed by Dr Anthony Hopkins, for funding thiswork; Mrs Millie Simpson, anticoagulant clinic coordinator forhelping in data collection; and Dr Adrian Renton for advice onthe manuscript.

Appendix 1

Patient questionnaireSection A: This section tells us about your general health and the anticoagulanttreatment (for example, warfarin or phenindione) that you are now receiving1 Since starting anticoagulant treatment, would you say that your general health has:

(Please tick)Improved D Worsened D Stayed the same D

2 How long ago was your present anticoagulant treatment started?Less than 1 week DBetween 1-2 weeks LiiBetween 2-4 weeks LMore than 4 weeks DCan't remember ElIf more than 4 weeks, please state how long

3 As far as you know, which of the following are reasons for your present anticoagulant treatment?(Please tick Yes, No, or Not sure for each item)

a Deep venous thrombosis (DVT) - blood clot in leg veinb Pulmonary embolus (PE) - blood clot in lungc Heart diseased Heart surgerye StrokeAnything else?

Yes No-II

Fo:

Notsure

Do-Ii

Lii

4 About your present anticoagulant treatment:a Have you wanted to approach anyone for medical advice?

Yes E No Db Have you been able to?

Yes El No Lc If YES, who?

5 Do you worry about being on anticoagulant treatment?A lot E A little E Not at all LiiIf so, what are your concems?

6 Please list ALL medications, tablets, and remedies you are taking now. Please include those obtained withand without a prescription (eg from your GP, hospital, health shops and chemists). Please also statewhether taken regularly OR only when you think you need to

Name of preparation (Please tick one or other) For how many Started by whom?weeks/months/years (eg GP, hospital,

Taken regularly Taken when needed have you been taking it? anticoagulant clinic,self, pharmacist)

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Evaluation of patients' knowledge about anticoagulant treatment

Section B: The questions in this section are about the time you spent in the wardas a patient at Central Middlesex Hospital1 Were you recently an inpatient in a ward at Central Middlesex Hospital?

Yes R No CPlease answer question 2 only ifyou started anticoagulant treatment while in the ward at Central MiddlesexHospital

2 a When you left the ward were you handed a white card "Advice for patients on anticoagulanttreatment"?Yes R No R Not sure D

b Was the information on the card:Too complicated? DToo simple? DJust right? D

c Please state any problems you had with the white card:

Section C: The questions in this section are about the information you may havebeen given about your anticoagulant treatment1 a Were you told how anticoagulant treatment works, and was this clear to you?

Yes, and clear E Yes, but not clear D No Db Who told you?

Doctor in the anticoagulant clinic LI Doctor in the ward LI Don't know LIWho else (for example, GP, nurse, other clinic staff) Please state:

2 a Were you told of the problems with anticoagulant treatment, and was this clear to you?Yes, and clear LI Yes, but not clear LI No L

b Who told you?Doctor in the anticoagulant clinic EI Doctor in the ward L Don't know LI

Who else (for example, GP, nurse, other clinic staff) Please state:

3 a Were you told what to do if you have a nosebleed or are bruising, and was this clear to you?Yes, and clear LI Yes, but not clear LI No LI

b Who told you?Doctor in the anticoagulant clinic L Doctor in the ward L Don't know LI

Who else (for example, GP, nurse, other clinic staff) Please state:

4 a Were you told of the calendar method to check your anticoagulant treatment, and was this clearto you?Yes, and clear L Yes, but not clear El No L

b Who told you?Doctor in the anticoagulant clinic L Doctor in the ward L Don't know L

Who else (for example, GP, nurse, other clinic staff) Please state:

5 a Were you told what drugs to avoid, and was this clear to you?Yes, and clear LI Yes, but not clear LI No LI

b Who told you?Doctor in the anticoagulant clinic aI Doctor in the ward LI Don't know LI

Who else (for example, GP, nurse, other clinic staff) Please state:

6 a Were you given advice on drinking alcohol, and was this clear to you?Yes, and clear EI Yes, but not clear LI No LI

b Who told you?Doctor in the anticoagulant clinic LI Doctor in the ward LI Don't know LI

Who else (for example, GP, nurse, other clinic staff) Please state:

Section D: This section is a miniquiz because we would like to find out how well patientshave been informed about anticoagulant treatment and the problems it may cause1 How does warfarin work?

(Please tick Yes or No for each statement)Yes No

a Warfarin does not affect the blood E] LIb Warfarin thins the blood LI LIc Warfarin thickens the blood LI LI

2 Could starting a new treatment or any other preparation affect your anticoagulant treatment?Yes LI No LI Don't know LI

3 Could changing the dose of a treatment you are already taking affect your anticoagulant treatment?Yes LI No LI Don't know LI

4 The following are statements about any patient drinking alcohol when receiving anticoagulanttreatment(Please tick Yes or No for each statement) Yes No

Alcohol does not affect anticoagulant treatment L LAlcohol must be avoided totally L LI8 units of alcohol a night is OK (for example, 4 pints of beer or 8 glasses of wine) El L1 unit of alcohol a night is OK (for example, 2 pint of beer or 1 glass of wine) L L

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Taylor, Ramnsay, Tant, GabbaY, Cohen

5 Of the list below, which drugs should be avoided when receiving anticoagulant treatment? Pleasedo not be alarmed, some of the drugs listed below should not be avoided(Please tick True, False, or Don't know for each item)

Don't know True FalseAspirin L Li LiCough medicines Li Li LNurofen L Li LiAntacids (for example, Rennie, Settlers) Li L LiOptrex (eye solution) Li Li LiCodliver oil Li Li LiGarlic capsules Li Li LiTCP/Dettol Li Li LiVitamin C tablets Li Li LiThroat lozenges Li Li LiHealth shop remedies E Li Li

6 Which of the following could be possible side effects of taking the wrong (too little or too much)amount of anticoagulant treatment? Please do not be alarmed, some of the items are wrong(Please tick True, False, or Don 't know for each item,)

Don't know True FalseBlood in stools LL LiNose bleeds L Li LSleeplessness L Li LProlonged bleeding after cuts LL LiBruising without injury Ei Li E]Weakness Li Li LiLoss of appetite EL L CiRinging in the earsNauseaBlood in urineNervousnessBlood clotsHigh blood pressure

L-iL-iL-iL-iLiLi

G] F

Li LiL

Patient details CONFIDENTIALSo that we can be sure that this questionnaire reaches a cross section of patients we would appreciatethe following informationa Are you replying on behalf of:

Yourself Li Somebody else Lib If somebody else, please explain:

i) Your relationship to the patient:ii) The reason your help is needed:

Ifyou are completinlg this form on7 behalf of the patient please anszwer the following qitestion as they applyi to hiin /herb Are you (the patient):

Male Li Female Lic Which of the following age groups are you (the patient) in:

Under 16 Li16-30 Li31-45 Li46-60 Li61-70 2i71 and over Li

d What language do you (the patient) speak at home?English Li Other (please specify)

e Which of the following best describes your (the patient's) employment status?Employed full time Li Employed part time LiUnemployed Li Long term sick leave or benefit LiStudent Li Retired Li

Thank you very much for taking the time to complete this questionnaire

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2 Standing Advisory Committee for Haematology of theRoyal College of Pathologists. Drug interaction withcoumarin derivative anticoagulants. BMJ 1982;285:274.

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Appendix 2

Checklist for patient counsellingPlease tick to confirm that the use of the yellow Department of Healthanticoagulant treatment book has been explained to the patient E

Please tick the boxes to confirm that you have counselled the patient onthe following items:

1 Compliance (the calendar method) D2 Rationale for treatment E3 Mode of action of warfarin D4 Obtaining supply of warfarin from general practitioner I5 Possible effects of poor control of anticoagulation

Bleeding or severe bruising LRecurrence of thromboembolism L

6 Appropriate action if bleeding or bruising occurs LI7 Appropriate action if patient has diarrhoea or is vomiting L8 Starting new treatment and changing dose of current treatment L9 Self prescribed drugs:

Avoid aspirin LIAvoid Nurofen C]Avoid health shop remedies LIAsk pharmacist, doctor for advice L

10 Alcohol intake LI11 Contraception, pregnancy, and hormone replacement therapy

(if relevant) LI12 Surgical procedures (including dental work) LI13 Injections LI14 Leisure activities ElCounselled by: Date:

14 Roddie A, Pollock A. Therapeutic control of anti-coagulation: how important is patient education? CGinLab Haematol 1988;10:109-12.

15 Wikblad K. Patient's perspectives of diabetes care andeducation. Jf Adv Nursing 1991 ;16:837-44.

16 Mechanic D. Health and illness behaviour and patient-practitioner relationships. Soc Sci Med 1992;12:1345-50.

17 Greenfield S. Sherrie H, Kaplan H, Ware J, Martin E,Harrison J. Patients' participation in medical care. _7 GenIntern Med 1988;3:448-57.

18 McManus I, Vincent C, Thom S, Kidd J. Teachingcommunication skills to clinical students. BMJ 1993;306:1322-7.

19 Kitchen J. Patient information leaflets - the state of the art.J R Soc Med 1990;83:298-300.

20 Dodds L. Industry produced patient information leaflets:are hospital pharmacies making use of them? Pharm .71993;243:311-2.

21 Vogt BH, Kapp C. Patient education in primary carepractice. Patient Education 1987;81:273-7.

22 Kornblit P, Senderoff J, Davis-Erikson M, Zenk J. NursePractitioner 1990;15:21-33.

23 Wyness MA. Evaluation of an educational programme forpatients taking warfarin. _7 Adv Nursing 1990;15:1052-63.

24 Taylor F, Ramsay M, Renton A, Cohen H. Referral ofpatients to an anticoagulant clinic. Quality in Health Care1994;3: 120.

25 Wells F. Patient information - the present and the future..7 R Soc Med 1990;83:300-2.

26 Siminioff L. Improving communications with cancerpatients. Oncology (Huntingt) 1992;10:83-9.

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