PSYCHO-ONCOLOGY

Psycho-Oncology 12: 521–531 (2003)Published online 20 May 2003 in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/pon.690

IMPROVING SUPPORTIVE CARE FOR WOMENWITH BREAST CANCER IN AUSTRALIA: THE

CHALLENGE OF MODIFYING HEALTH SYSTEMS

SALLY REDMANa,*, JANE TURNERb and CINDY DAVIScaNational Breast Cancer Centre, Sydney, Australia

bUniversity of Queensland, Brisbane, AustraliacUniversity of Tennessee, USA

SUMMARY

Although the benefits of many psychosocial support strategies in improving well being in women with breast cancerhave been demonstrated, few women receive these programs as part of routine care. This paper provides somerecommendations, based on experience in Australia, about how access to evidence-based supportive care strategiesmight be improved through modification of health systems.It demonstrates the paucity of research about the costs and health service implications of psychosocial support

strategies, which is vital to health planning and service delivery change. It outlines the systematic approach taken inAustralia to improving psychosocial support nationally by: the development of research reviews; preparation ofguidelines about supportive care; implementation of programs to foster the adoption of guidelines throughmodification of policy, health service delivery and clinician training; and monitoring programs. Coalitions ofgovernment, health care professionals and consumers are key to effective lobbying for change. If all women withbreast cancer are to receive better supportive care, there is a need for approaches which: refocus the research effort inpsycho-oncology; develop more strategic approaches to generating change in health systems and health policy andfoster partnerships to advocate for improved resources. Copyright # 2003 John Wiley & Sons, Ltd.

THE CHALLENGE OF IMPROVINGHEALTH SERVICE DELIVERY

Over the past 30 years, a growing body of evidencehas demonstrated that information, counsellingand supportive care can increase well being andhealth outcomes in women with breast cancer.Many of these studies are methodologicallyrigorous randomized trials (McArdle et al., 1996;Burton et al., 1995); there are also several metaanalyses providing level 1 evidence that supportivecare interventions are of value (Meyer and Mark,1995; Devine and Westlake, 1995; Johnston andVoegele, 1993).

Despite the wealth of research, which oftenexceeds that available for clinical interventions, it

is evident that many of these programs are notroutinely implemented in practice. For example,there is evidence of benefit of access to a specialistbreast nurses (level 2) (McArdle et al., 1996;Maguire et al., 1980); provision of an audiotapedrecord of the consultation (level 2) (Burton et al.,1995; Tattersall et al., 1994); and offer of breastreconstruction (Brandberg et al., 2000). However,in a national population-based sample of Austra-lian women with early breast cancer, only 14%reported access to specialist breast nurses, 4%received an audiotape of their consultation and8% of women who had a mastectomy had breastreconstruction (Williams et al., 2002). Only a smallproportion of cancer patients who are clinicallydepressed or anxious are identified by theironcologists (Newell et al., 1999) and even fewerare referred for counselling or support (Pascoeet al., 2000).

If the information and support needs of cancerpatients are to be met, there is a need to change

Copyright # 2003 John Wiley & Sons, Ltd. Received 13 March 2002Accepted 25 September 2002

*Correspondence to: National Breast Cancer Centre, Sydney,Australia.

health-care systems to encourage the adoption ofsupportive care programs with demonstratedefficacy into routine practice. It will be necessaryto focus at the population level on modifyingservices and policy and to consider the effective-ness of programs in practice rather than just theirefficacy under trial conditions.

This paper will outline several factors which willinfluence our success in attempting to encouragebetter supportive care at the population level.There will be a need to refocus our research effort,to develop more strategic approaches to generat-ing change in health systems and policy and tofoster partnerships for advocacy for improvedresources.

The paper is based primarily on the experienceof the National Breast Cancer Centre in Australia.The Australian National Breast Cancer Centrewas established in 1995 to coordinate a nationalapproach to improving evidence-based care forwomen with breast cancer. The Centre works withconsumers, clinicians, policy makers and cancerorganizations to review research, develop clinicalpractice guidelines and implement evidence-basedprograms to improve practice and policy.

IMPROVING OUR HEALTH SERVICERESEARCH BASE

There is an extensive research base about suppor-tive care for women with breast cancer. However,much of this research is less than optimally usefulto those seeking to improve health services at thepopulation level. Health service planners needinformation about the costs of services and abouthow programs might operate in the context oftheir systems. Studies that demonstrate the bene-fits and costs of different approaches to providingcare are of much greater value to policy makersthan those which describe the needs of cancerpatients or which demonstrate the efficacy of aprogram without consideration of its feasibility orthe costs of delivery to a whole population.

The need to refocus psycho-oncology researchto collect such data is illustrated by an analysis ofrecent papers about supportive care for womenwith breast cancer. A Medline search for allarticles published between August 1999 and July2000 was undertaken using the search words breastcancer� communication, needs, quality of life,

interventions, counselling, education, nurses, mul-tidisciplinary care, policy, education.

In total, 513 articles were located using thissearch strategy; of these, 56 had no abstracts, 76were reviews or comment rather than original datapublications and 251 were not relevant to suppor-tive care. The remaining 130 articles were coded byone of the authors (SR, CD) or by a third personaccording to a pre-determined coding schedule. Allthree coders have published significantly in peerreview journals in relation to supportive care andhealth and also have practice and policy experi-ence. A subsample of papers were recoded by adifferent member of the coding team and there wasa high degree of reliability in the coding. Articleswere coded into one of five categories: surveys orqualitative studies of the psychosocial needs ofwomen (Needs Assessment); descriptive studiesaddressing issues other than the needs of women,such as those assessing satisfaction with care (OtherDescriptive Studies); trials of treatments of thetumour which included assessment of the impact ofthe treatment on psychosocial well being or qualityof life (Tumour Treatment Studies); interventionstudies assessing the impact of psychologicalinterventions (Psychosocial Interventions) or studiesexploring health services or health system factors(Health Services/systems). Studies were also classi-fied according to the numbers of women included,whether the study was based on a populationsample and whether cost data were collected. Fivestudies could not be coded into only one of thesecategories.

Figure 1 shows the numbers and proportion ofstudies coded into each category. It is evident thata greater proportion of papers (32%) werecategorized as Needs Assessment than into anyother category; these papers were primarilydescribing the supportive care needs of womenwith breast cancer. Of the 42 studies in thiscategory, 23 (55%) had small samples of less than100 patients. Although 18 (43%) had sample sizesof more than 100 patients, only one study waspopulation based attempting to survey all womenwith breast cancer in a geographic area. Non-population based studies can provide biasedestimates of need}for example, women treatedat major teaching hospitals may receive bettersupportive care than those managed in smallerhospitals. Population-based information is vitalfor planning health service delivery, since it willtruly quantify the extent of demand and indicatewhere services are most needed.

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Figure 1 also shows that 14 (11%) of studieswere Psychosocial lnterventions exploring the im-pact of supportive care or psychosocial programsdesigned to improve quality of life or psychosocialwell being. Such studies are very important inhelping develop effective supportive care interven-tions. However, these 14 studies taken alone areunlikely to have a major impact on health servicedelivery or policy; they were all efficacy studiesexploring the impact of an intervention under idealtrial conditions. Only one of the 14 studiesincluded an economic evaluation or a costcomponent, despite the fact that this informationwill be vital in determining whether the interven-tion is adopted in practice.

Only two of the 130 coded studies examinedhealth systems or the community effectiveness ofan intervention program. These studies providethe most readily generalizable information forpolicy makers and planners.

The Medline database was selected because itincludes most journals that are commonly read byclinicians and policy makers. In undertaking thisanalysis, we were interested in the extent to whichresearch into supportive care provided informa-tion that could be readily used by clinicians andpolicy makers to modify policy or practice.Although some specialist social science journalsmay not be included in Medline, papers in thesejournals will be unlikely to influence policy orpractice since they will not be read by relevantpractitioners or policy makers. The search wasrepeated in the PsychINFO database to check forreliability; of papers with a substantial sample size(over 90), only four were not included in theMedline database and all of these were descriptivestudies; inclusion of these studies would not havealtered the conclusions of the review.

While there is a considerable research effort insupportive care for cancer patients, it is notoptimally focused in collecting information tounderpin improvements in health service deliveryor health policy. Similar findings have beenreported from analyses of research in other areas.For example, the review from the CochraneEffective Practice and Organization of Care Re-view Group concluded that it is striking how littleis known about the effectiveness and cost effec-tiveness of interventions that aim to change theproactice or delivery of health care (Bero et al.,1998); similarly a recent review of the impact ofprinted education materials found that only onestudy included an economic analysis (Freemantleet al., 1996). If real gains in the well being ofwomen with breast cancer are to be made, agreater emphasis on implementation of supportivecare programs in the real world and on the servicedelivery, policy and cost implications will benecessary.

DEVELOPING A SYSTEMATIC EVIDENCE-BASED APPROACH TO IMPROVING

SUPPORTIVE CARE

If changes to health service systems are to occur,systematic and strategic approaches to changinghealth systems will be necessary. There are specialchallenges in changing health service deliverysystems and improving supportive care in Aus-tralia; there is a mixed health system withapproximately 50% of women with breast cancerbeing treated in the private sector and theremainder in the public sector (Hill et al., 1999).Private sector care is often provided in the

Figure 1. Proportion of articles classified in each research category.

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individual rooms of clinicians rather than in aclinic. Thirty percent of Australian women withbreast cancer live in rural or remote parts ofAustralia (Hill et al., 1999) which are sparselypopulated and where some health-care services,including supportive care services, are oftenunavailable. There is a division of responsibilityfor health between states and the federal govern-ment.

Figure 2 shows the systematic approach toencouraging changes in health service delivery tosupport evidence-based supportive care developedby the National Breast Cancer Centre as part ofthe effort to improve supportive care in Australia.It outlines a four stage iterative process to impactat the health service and policy levels.

Review research

If programs for supportive care are to beadopted into routine practice, they must be basedon evidence of benefit. The National BreastCancer Centre undertook 16 separate reviews ofevidence about different aspects of supportive careas a first step (e.g. Burke and Kissane, 1998;Turner et al., 1998). These reviews highlighted thewealth of evidence about the efficacy of differentinterventions to improve supportive care forwomen with breast cancer; there was level 1 (metaanalysis) or level 2 (randomized trial evidence) tosupport the benefit of 18 different supportive careinterventions in women with breast cancer. Thesereviews have been used to challenge the perception

among some clinicians and policy makers thatsupportive care is somehow the ‘soft’ end ofpractice lacking in hard evidence of benefit.

Develop guidelines. Guidelines provide summa-ries of evidence and assist in translating researchinto recommendations for practice and policy.There is evidence that clinical practice guidelinescan be effective in changing both the process ofcare and health outcomes (Grimshaw and Russell,1993).

The Centre has published guidelines aboutthe provision of supportive care to women withbreast cancer, Psychosocial clinical practiceguidelines: information support and counsellingfor women with breast cancer (National Healthand Medical Research Council and the NationalBreast Cancer Centre, 2000). The target audiencefor the guidelines are clinicians involved in themanagement of women with breast cancer}the guidelines are designed to provide evidence-based recommendations about how the treatmentteam can improve supportive care. The guidelineswere developed by a multidisciplinary groupincluding clinicians, consumers and those withpsychosocial expertise and reviewed by relevantprofessional colleges. The level of evidence sup-porting each of the recommendations is indica-ted}some examples of key recommendations areshown in Table 1.

The guidelines have been endorsed by the peakhealth body in Australia, the National Health andMedical Research Council; the endorsement pro-cess includes two rounds of public consultationand rigorous independent review of the evidencesupporting the recommendations and the processused to develop the document (NHMRC, 1995).Endorsement by NHMRC ensures that the guide-lines are perceived as highly credible and suchendorsement has been shown to increase uptake(Curry, 2000).

The guidelines outline an agreement about whatconstitutes best supportive care for women withbreast cancer based on the most recent research;they therefore constitute an invaluable tool foradvocating for improvements in health servicesand in policy. They are beginning to be adopted asthe standard of care in major health servicedelivery programs. For example, relevant compo-nents of the guidelines have been included inthe accreditation standards for the nationalmammographic screening program (BreastScreenFigure 2. A systematic approach to improving care.

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Australia, 2002) and they are being used to guide afederally funded national program to improve carefor rural women, Strengthening support for womenwith breast cancer.

Copies of the guidelines have been sent toall clinicians managing women with breastcancer in Australia along with a ‘champion’ letterfrom a relevant influential clinician, which hasbeen shown to increase adoption (Borbas et al.,2000).

The guidelines have also been found to be inaccord with women’s expressed needs (Rankinet al., 2000); perhaps for this reason, consumershave been willing to lobby for the implementationof the guidelines.

Implementing the recommendations

There is ample evidence that guidelines alonewill not improve care (Oxman et al., 1995). If anevidence-based approach is truly to be adoptedinto practice, changes in health systems will oftenbe needed. As outlined in Figure 2, if care is to beimproved on a national basis, systemic change willbe required including changes to health policy,health service delivery, clinician training, continu-ing education and quality assurance programs.

Policy and service delivery change to enable thefull adoption of the recommendations in thePsychosocial clinical practice guidelines will requireeffort over many years. However, three examplesof current work to foster national changes intraining programs, policy and health servicedelivery are provided as illustrations of the typesof approach that are likely to be necessary.

Communication skills: building nationaltraining capacity

Interactive training can improve clinicians’communication skills (Fallowfield et al., 1998). InAustralia, surgeons recognize the need for im-proved training, with only 29% of a sample of 143believing they are very competent in areas likebreaking bad news (Girgis et al., 1997). Eightypercent of this sample believed there was a needfor formal training and assessment in skills inbreaking bad news. In 1996, the Centre establisheda communication skills training program based onthe model developed in the United Kingdom(Fallowfield et al., 1998). During a 2-year period,over 120 clinicians managing women with breastcancer took part in the program. Fifty clinicianswere surveyed about their responses to thecommunication skills program and 100% indi-cated that they would recommend the trainingprogram to their colleagues and would be inter-ested in attending future programs.

Although clinicians were positive about theirparticipation in the program, it seemed unlikelythat it was making a significant difference toimproving communication between doctors andwomen with breast cancer across Australia. It isestimated that there are at least 800 surgeons,radiation and medical oncologists managing wo-men with breast cancer in Australia}it is evidentthat only a relatively small proportion haveparticipated in the communication skills training

Table 1. Recommendations from the Psychosocial Clinical

Practice guidelines: some examples

Level of

evidence*

Women’s understanding recall and/or

satisfaction with care increases when

techniques such as the following are used:

* Taping of the consultation II* General information tapes II* A summary letter as a follow up to the

consultation

II

* The presence of a specialist breast nurse II

Discussions with a specialist breast nurse reduce

psychological morbidity and increase under-

standing of breast cancer, recall of information

and perceptions of support for women with

breast cancer

II

Providing women with information about the

procedure they are about to undergo reduces

emotional distress and improves psychological

and physical recovery

I

Appropriate counselling improves the well being

of women with breast cancer

I

*The levels of evidence are those used by the National Healthand Medical Research Council in Australia (Quality of Careand Health Outcomes Committee):

Level I}a systematic review of all relevant randomized

controlled studies.

Level II}at least one properly designed randomized controlled

trial.

Level III}well-designed controlled trials without randomiza-

tion, well-designed cohort or case control studies or multiple

time series.

Level IV}descriptive studies.

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program and they are likely to be those alreadymost interested in issues of communication.Further, it appears that clinicians are likely toneed repeated opportunities to participate incommunication skills training rather than a oneoff workshop, if it is to make a real difference totheir practice (Razavi et al., 1993).

If the recommendations in the Psychosocialclinical practice guidelines about communicationbetween doctors and patients are going to changecare for women across Australia, there is a need isto build national infrastructure to support com-munication skills training. The goal of theprogram must be to ensure that all clinicians canaccess high quality training close to where theypractice and on repeated occasions. If it is toattract many clinicians, there must also beincentives for participation in the program.

A national communication skills training strategywas established. It provides written evidence-basedmodules around key topics such as tellinga woman she has a breast cancer, discussingprognosis, discussing treatment options andpreparing women for potentially threateningprocedures. It includes a national train-the-trainer program to increase the availability ofthose with expertise in communication skillstraining and strategies to enable local groups toaccess the names of these trainers. Funding of alocal grant program to support communicationskills training by organizations such as hospitalsand professional colleges across Australia is aninnovative approach to developing training whichaddresses the unique needs of different profes-sional groups within their own context. It alsoenables more clinicians to participate in training ina cost effective manner. For example, in the firstround of local grant funding, $15 000 was allo-cated and almost 100 clinicians participated intraining.

At the same time, there have been otherstructural changes designed to encourage partici-pation in communication skills training. TheMedical Oncology Group of the Royal Australa-sian College of Physicians has made communica-tion skills training compulsory for trainees and theRoyal Australasian College of Surgeons willshortly make it compulsory for breast surgerytrainees.

Over time, it is intended that the development ofthis infrastructure will extend communicationskills training from small programs for interestedclinicians to a systematic national approach in

which most clinicians managing women withbreast cancer will take part.

Changing policy in relation to supportive care.Evidence from five randomized control trialsshows that specialist breast nurses can improvewomen’s understanding, recall, satisfaction withcare and continuity of care (McArdle et al., 1996;Maguire et al., 1980; Clacey et al., 1988; Maguireet al., 1983; Watson et al., 1988). Breast nurses canreduce psychological morbidity and anxiety andincrease the identification of women with depres-sion.

However, few women in Australia report havingaccess to a specialist breast nurse program and itseems likely that the relatively small number ofspecialist breast nurse positions in Australia isattributable to a lack of information about thebenefits and costs of these nurses within theAustralian context. The diverse geography andmixed health-care system mean that the researchfrom urban clinics in the United Kingdom maynot be readily generalizable.

To help policy makers consider the role ofspecialist breast nurses in the Australian context, anational demonstration project was conducted toexplore the feasibility, acceptability, cost andimpact of specialist breast nurses across Australia(Liebert et al., 2000). The project was conducted infour diverse sites including both inner metropoli-tan health networks and remote parts of Australia.For example, one site was a major urban teachinghospital responsible for providing care to womenliving up to 2620 km away through remote parts ofAustralia with a significant indigenous population.Another site was an inner metropolitan networkincluding four private and public hospitals. Theaim was to provide information about howspecialist breast nurses might work within verydiverse service delivery contexts.

The demonstration project found that thespecialist breast nurses were perceived as veryuseful by both women and health-care providers inall sites; the project documented the costs ofimplementing the positions under different condi-tions and demonstrated within a pre-post designthat some aspects of care were improved (Specia-list Breast Nurse Project Team, 2000; Parle et al.,2001).

The demonstration project provided an evidencebase for considering policy change in relation tospecialist breast nurses. The data have been used

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by consumer groups to advocate for the establish-ment of specialist breast nurse positions. As aresult of the demonstration project and of theadvocacy, specialist breast nurses were included ina comparative cost analysis funded by the govern-ment exploring the relative cost effectiveness of anumber of possible new programs in cancer(Carter et al., 2001). The cost analysis usedprogram budgetting and marginal analysis techni-ques to explore health gain, effectiveness, equityand likelihood of successful implementation. Thedemonstration project was key because onlyprograms about which sufficient data exist canbe included in such an analysis. Specialist breastnurses were ranked highly within this evaluationbeing the fourth most cost effective measure of the13 examined. This has meant that funding forspecialist breast nurse positions has been includedas part of a national Priorities for Action inCancer Control document, developed by theNational Cancer Strategies Group in Australia(National Cancer Strategies Group, 2001). TheCancer Strategies Group is the national forumwhere the Federal, State and Territory Govern-ments come together with cancer organizations tomake recommendations for consideration byAustralian Health Ministers. This is particularlyimportant in Australia since the implementation ofhealth programs is primarily within the jurisdic-tion of State and Territory Governments.

In addition, the Federal government has allo-cated funds to improve supportive care for womenwith breast cancer, particularly those living inrural areas. This program has resulted in theestablishment of a number of specialist breastnurse positions particularly in rural and remoteparts of Australia.

Modifying local service delivery. Many decisionsabout resource allocation are made at the hospitallevel; if improvements in supportive care are tooccur, there will be a need to increase the resourcesat the local level. There has been little researchabout the most effective ways encouraging hospi-tals to place greater emphasis on supportive care.

A randomized trial was conducted to investigatethe impact of a kit-based approach to encouragingthe adoption of clinical practice guidelines. The kitincluded recommendations about supportive care.In the trial, 20 hospitals were randomly allocatedto control and intervention groups. In the inter-vention group, the Chief Executive Officer (CEO)

of the hospital received a letter from the fundingagency (government or private sector) encourag-ing participation in the trial. A kit outlining stra-tegies for change and providing concrete resources(such as a job description for a specialist breastnurse) was provided. Intervention hospitalswere encouraged to establish multidisciplinarygroups to review current care and identify areaswhere change was required.

Seven of the 10 sites decided to improvesupportive care; the programs established includedstrategies such as the appointment of a breastnurse, improving support and information provi-sion and the establishment of a local supportivecare directory.

At the end of the trial, intervention sites careprovided care which was more in accord with theguidelines than did the control sites (Luxford et al.,under editorial review). Significantly, three siteshad appointed a specialist breast nurse as a resultof participation in the trial. Participating cliniciansreported that the profiling of breast cancerthrough involvement of the study had enabledthem to seek resources and to implement changeswithin the hospital that they had already recog-nized as important. They identified the involve-ment of the funding agencies and of the CEO ofthe hospitals as critical in redirecting resources.

These three programs illustrate that changes intraining, policy and local resource use are possibleand demonstrate the need for such programs if realimprovements in supportive care are to occur.

Monitoring supportive care. In order to identifythe needs for additional programs and to explorethe effectiveness of programs to improve care,Figure 2 identifies the fourth step in the cycle asestablishing a monitoring program.

In Australia, this has been achieved through apopulation-based interview with women with earlybreast cancer (Williams et al., 2002). The cancerregistries were used to identify a representativesample of women who were invited to take part ina national audit of care. In total, 544 women wereinterviewed to explore the extent to which theyreceived information and supportive care in linewith recommendations in the Psychosocial clinicalpractice guidelines and with other clinical practiceguidelines.

The audit indicated that care was in accord withmany of the guideline recommendations, forexample, most women were told their diagnosis

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by a senior doctor and most felt they had enoughinformation about treatment. The audit alsoindicated gaps in care; for example, few womenreceived information about clinical trials andmany felt that support for their families was notadequate.

This survey provides data about the quality ofcare across Australia and is therefore a vital tool inprogram planning. It identified gaps in currentcare where programs should be targetted toimprove health service delivery. Regular repeatsof the audit will enable improvements in suppor-tive care to be mapped over time. Considerableeffort is often directed at monitoring those aspectsof care designed to remove or limit the growthof the tumour; real improvements in supportivecare will require the development of similarroutine audit of service delivery and patientoutcomes.

CREATING A CLIMATE FOR MODIFYINGHEALTH SERVICE DELIVERY:

PARTNERSHIPS

Even with more focused research and a systematicapproach to building programs, supportive carestrategies will have to compete with other prioritiesfor scarce health service resources.

The development of effective partnerships willbe vital for creating a climate where supportivecare programs are considered a priority. In theAustralian experience, it has been possible tocreate partnerships around supportive care forbreast cancer with clinicians, government andconsumer groups. Without these partnerships,little could be achieved.

In 1995, the Federal government released areport by the House of Representatives Inquiryinto the Management and Treatment of BreastCancer (House of Representatives StandingCommittee on Public Affairs, 1995). The Inquiryconcluded that:

Despite the proven high incidence of seriouspsychosocial morbidity in breast cancer patients,in Australia at least very little has been done toeither investigate the extent and severity of thatmorbidity or to provide a suitable means of addres-sing it either as a preventive measure or as atherapeutic measure.

This Inquiry made 43 recommendations aboutimproving care}several of these focused onsupportive care. For example, the Inquiry recom-mended that there be a review of medical teachingof undergraduates regarding the psychosocialcontext of breast cancer and that counsellingservices be an integral part of multi-disciplinaryteams including access to counselling for familymembers. The Inquiry therefore indicated govern-ment support for improving supportive careservices for women with breast cancer.

Clinicians have also endorsed the importance ofimprovements in supportive care. For them, theexistence of strong evidence base to the recom-mendations has been vital as has their involvementin the development of the guidelines and recom-mendations. For example, clinicians have led thecommunication skills training program andthrough this participation have advocated for itsadoption into the training programs of profes-sional bodies.

If supportive care is to improve, consumersmust be active partners with clinicians and cancerorganizations in working towards change. Con-sumers are natural partners in advocating forsupportive care because these issues are often veryimportant to them. In the early stages, there maybe a need to foster consumer organizations}forexample, the National Breast Cancer Centreauspiced a conference attended by almost 350consumers which resulted in a report identifyingpriorities from their perspective (National BreastCancer Centre, 1998). Consumer science andadvocacy training can also help to ensure thatconsumers are informed and effective partners(Davis et al., 2001).

Consumer groups across Australia have usedthe Making a difference report to lobby for changeat the national, state and local levels. As a result ofconsumer advocacy, a national meeting was heldto stimulate research into lymphoedema. Themeeting received high level government supportand resulted in the establishment of a network ofresearchers, a population-based prevalence studyof 800 women (McCredie et al., 2001), theestablishment of a national sentinel node biopsytrial and special government research funding todevelop measures of lymphoedema including itsimpact on quality of life.

Similarly, advocacy from consumer groupsmade a significant contribution to the recentdecision in Australia to include Herceptin on thepharmaceutical benefits schedule.

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LESSONS FOR OTHER COUNTRIES

This paper has described the experience of devel-oping and implementing guidelines for the provi-sion of supportive care in Australia. In developingand implementing guidelines, countries will facedifferent challenges depending on their healthsystem, demographics, availability of professionalswith psychosocial expertise and the attitudes andskills of clinicians. These differences betweencountries emphasise the need for a systematicapproach to improving evidence-based care asshown in Figure 2. Several recent papers (e.g.Grol, 1997; Grol and Grimshaw, 1999) havehighlighted the need to build programs to fosteran evidence-based approach on careful situationalanalysis which will differ from country to country.

Nonetheless, many aspects of the Australianexperience are generalizable to other countriesinterested in improving evidence-based supportivecare. The recently published NCCN practiceguidelines for the management of psychosocialdistress have some aspects in common with theAustralian guidelines (National ComprehensiveCancer Network, 1999); the challenge in imple-menting these guidelines include the need tochange attitudes, skills and health service deliverysystems has been noted (Holland, 1997).

In addition to the role of a systematic approach,several lessons from the Australian experience maybe of particular relevance:

* It appears that a central coordination agencylike the National Breast Cancer Centreencourages more rapid and systematicchange. A national coordination agency canbring authority in advocating for change andcan work consistently, systematically andwith a broad range of agencies. It has beensuggested that a national plan developed by amultidisciplinary consortium to establish anagenda for clinical, education and researchactivities would assist in encouraging theadoption of the NCCN practice guidelinesfor the management of psychosocial distress(Holland, 1997).

* The Australian experience has highlightedthe need to ensure that clinicians such assurgeons, oncologists and radiologists under-stand the importance of adequate supportivecare. Although those with expertise in

psychosocial issues can advocate for change,they are unlikely to be optimally effectivewithout the support of other disciplines. Ofthe clinical disciplines, surgeons and oncolo-gists spend most time with patients andtherefore encouraging their active participa-tion in supportive care programs will be vital.The multidisciplinary approach used by theNational Breast Cancer Centre meant thatsurgeons and oncologists were actively ex-posed to the evidence about psychosocialissues. The focus on an evidence-basedapproach resulted in a greater commitmentfrom clinicians and greater credibility for theguidelines and associated programs. A multi-disciplinary and evidence-based approachwill be important in all countries seeking toimprove supportive care.

* In Australia, the advocacy of women withbreast cancer was vital to fostering change. Itseems likely that consumer pressure will beimportant in all countries; in the US, theNational Breast Cancer Coalition has al-ready demonstrated its effectiveness in lob-bying for more research and improved carefor women with breast cancer (NationalBreast Cancer Coalition, 1999).

CONCLUSIONS

An excellent research base demonstrating theimportance and value of psychosocial interven-tions for cancer patients has been established. Thechallenge for the future is to ensure that what hasbeen learned is adopted into routine practice. Thiswill require a refocusing of our research effort toprovide data that are of more immediate use tohealth service planners. It will also requireprograms that are systematically focused onbringing about change at the health system leveland finally it will require psycho-oncologists towork closely with other partners to generate aclimate for change.

ACKNOWLEDGEMENTS

This work was undertaken by the National BreastCancer Centre which is funded by the Australian

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Commonwealth Department of Health and Ageing. Thesupport of AMP Foundation for the National Commu-nication Skills Training Program and the assistance ofMs Michelle McGovern and Dr Matthew Dobson incoding articles is gratefully acknowledged.

REFERENCES

Bero LA et al. 1998. Closing the gap between researchand practice: An overview of systematic reviews ofinterventions to promote the implementation ofresearch findings. BMJ 317: 465–468.

Borbas C, Morris N, McLaughlin B, Asinger R, GobelF. 2000. The role of clinical opinion leaders inguideline implementation and quality improvement.Chest 118: 24S–32S.

Brandberg Y, Malm M, Bloquist L. 2000. A prospectiveand randomised study ‘SVEA’, comparing effects ofthree methods for delayed breast reconstruction onquality of life, patient defined problem areas of lifeand cosmetic result. Plast Reconstructive Surg 105:66–74.

BreastScreen Australia. 2003. National AccreditationStandards BreastScreen Australia Quality Improve-ment Program. BreastScreen Australia: Canberra,Australia.

Burke S, Kissane DW. 1998. Psychosocial Support forBreast Cancer Patients: A Review of Interventions bySpecialist Providers. A Summary of the Literature1976–1996. NHMRC National Breast Cancer Centre:Sydney.

Burton MV, Parker RW, Farrell A et al. 1995. Arandomised controlled trial of preoperative psycholo-gical preparation for mastectomy. Psycho-Oncology 4:1–19.

Carter et al. 2001. Trial of Program Budgeting andMarginal Analysis (PBMA) to assist cancer controlplanning in Australia. Department of Health andAgeing, unpublished.

Clacey R, Thomas C, Pearson H. 1988. Does counsellingby nurses for mastectomy patients work? In Psycho-social Oncology, Watson M, Greer S, Thomas C (eds).Pergamon: Oxford, 159–168.

Curry SJ. 2000. Organisation interventions to encourageguidelines implementation. Chest 118: 40S–46S.

Davis C, Salo L, Redman S. 2001. Evaluating theeffectiveness of advocacy training for breast canceradvocates in Australia. European J Cancer Care 10(2):82–86.

Devine EC, Westlake SK. 1995. The effects of psychoe-ducational care provided to adults with cancer: Meta-analysis of 116 studies. Oncol Nurs Forum 22(9):1369–1381.

Fallowfield L, Lipkin M, Hall A. 1998. Teaching senioroncologists communication skills: Results from phase

1 of a comprehensive longitudinal program in theUnited Kingdom. J Clin Oncol 16(5): 1961–1968.

Freemantle N, Harvey E, Grimshaw J et al. 1996. Theeffectiveness of printed educational materials inchanging the behaviour of healthcare professionals.In Effective Professional Practice Module, FreemantleN, Bero L, Grilli R, Grimshaw J, Oxman A (eds). TheCochrane database of systematic reviews, issue 3.

Girgis A, Sanson-Fisher R, McCarthy W. 1997. Com-munication with patients: Surgeons’ perceptions oftheir skills and need for training. Austr N Z J Surg 67:775–780.

Grimshaw J, Russell I. 1993. Effect of clinical guidelineson medical practice: A systematic review of rigorousevaluations. Lancet 342: 1317–1321.

Grol R. 1997. Personal paper: Beliefs and evidence inchanging clinical practice. BMJ 315: 418–421.

Grol R, Grimshaw J. 1999. Evidence based implementa-tion of evidence-based medicine. J Qual Improvement25: 503–513.

Hill D, Jamrozik K, White V et al. 1999. SurgicalManagement of Breast Cancer in Australia in 1995.National Breast Cancer Centre: Woolloomooloo(NSW).

Holland JC. 1997. Preliminary guidelines for thetreatment of distress. Oncology 11(11A): 109–114.

House of Representatives Standing Committee onCommunity Affairs. 1995. Report on the Managementand Treatment of Breast Cancer in Australia. Aus-tralian Government Publishing Service: Canberra.

Johnston M, Voegele C. 1993. Benefits of psychologicalpreparation for surgery: A meta-analysis. Ann BehavMed 15: 245–256.

Liebert B, Pare M, White K, Rodgers A. 2000.Establishing an evidence base for the specialist breastnurse: A model for Australian breast care. AustrHealth Rev 24(1): 192–199.

Luxford K, Zapart S, Davis K, Boyle, Redman S.A quality improvement strategy for promoting bestpractice in health services: Results of a randomisedcontrolled trial. Under editorial review.

Maguire P, Tait A, Brooke M et al. 1980. Effect ofcounselling on the psychiatric morbidity associatedwith mastectomy. BMJ 281: 1454–1456.

Maguire P, Brooke M, Tait A, Thomas C, Sellwood R.1983. Effect of counselling on physical disability andsocial recovery after mastectomy. Clin Oncol 9:319–324.

McArdle JMC, George WD, McArdle CS et al. 1996.Psychological support for patients undergoing breastcancer surgery: A randomised study. BMJ 1996.312(7034): 813–816.

McCredie MRE, Dite GS, Porter L et al. 2001.Prevalence of arm morbidity following treatment forbreast cancer in the Australian Breast Cancer FamilyStudy. Breast 10: 515–522.

Meyer TJ, MarkMM. 1995. Effects of psychosocial inter-ventions with adult cancer patients: A meta-analysis

S. REDMAN, J. TURNER AND C. DAVIS530

Copyright # 2003 John Wiley & Sons, Ltd. Psycho-Oncology 12: 521–531 (2003)

of randomised experiments. Health Psychol 14(2):101–108.

National Breast Cancer Centre. 1998. Making aDifference, Report from the Conference: ActionsRecommended by Women with Breast Cancer for theBenefit of the Australian Community. Australia’s FirstNational Breast Cancer Conference for Women;October 16–18. Canberra, Australia

National Breast Cancer Coalition. 1999. Second WorldConference on Breast cancer Advocacy}InfluencingChange, Washington, DC.

National Cancer Strategies Group. 2001. Priorities forAction in Cancer Control 2001–2003. Department ofHealth and Ageing: Canberra.

National Comprehensive Cancer Network. 1999.NCCN practice guidelines for the management ofpsycho-social distress. Oncology 13(5A): 113–147.

National Health and Medical Research Council’sQuality of Care and Health Outcomes Committee.1995. Guidelines for the development and implementa-tion of clinical practice guidelines. Australian Govern-ment Publishing Service, Canberra.

National Health and Medical Research Council and theNational Breast Cancer Centre. 2000. The Psychoso-cial Clinical Practice Guidelines: Providing Informa-tion, Support and Counselling to Women with BreastCancer. National Breast Cancer Centre: Woolloo-mooloo (NSW).

Newell S, Sanson-Fisher RW, Girgis A, Ackland S.1999. The physical and psycho-social experiences ofpatients attending an outpatient medical oncologydepartment: A cross-sectional study. Eur J CancerCare 8(2): 73–82.

Oxman A, Thompson M, Davis D, Haynes R. 1995. Nomagic bullets: A systematic review of 102 trials ofinterventions to improve professional practice. CanMed Assoc J 153: 1423–1431.

Pascoe S, Edelman S, Kidman A. 2000. Prevalence ofpsychological distress and use of support services bycancer patients at Sydney hospitals. Aust N Z JPsychiatry 34(5): 785–791.

Parle M, Gallagher J, Gray C, Akers G, Liebert B. 2001.From evidence to practice: Factors affecting thespecialist breast nurse’s detection of psychologicalmorbidity in women with breast cancer. Psycho-Oncology 10: 503–510.

Rankin N, Newell S, Sanson-Fisher R. 2000. Consumerparticipation in the development of psychosocialclinical practice guidelines. European J Cancer 9(2):97–104.

Razavi D, Delvaux N, Marchal A, Bredart A, Far-acques C, Paesmans M. 1993. The effects of a 24-hpsychological training program on attitudes, commu-nication skills and occupational stress in oncology.European J Cancer 29A(13): 1858–1863.

Tattersall MHN, Butow PN, Griffin AM et al. 1994.The take home message: Patients prefer consultationaudio tapes to summary letters. J Clin Oncol 12(6):1305–1311.

Turner J, Wooding S, Neil C. 1998. Psychosocial Impactof Breast Cancer: A review of the Literature 1986–1996. NHMRC National Breast Cancer Centre:Sydney.

Specialist Breast Nurse Project Team. 2000. SpecialistBreast Nurses: An Evidence-based Model forAustralian Practice. National Breast Cancer Centre:Woolloomooloo.

Watson M, Denton S, Baum M, Greer S. 1988.Counselling breast cancer patients: A specialistnurse service. Counselling Psychol Quart 1(1):25–34.

Williams P, Rankin N, Redman S et al. 2002. Is care inaccord with clinical guidelines: A consumer audit.Breast 11(6): 509–515.

IMPROVING SUPPORTIVE CARE FOR WOMEN 531

Copyright # 2003 John Wiley & Sons, Ltd. Psycho-Oncology 12: 521–531 (2003)