Leading the way – best practice in psychosocial care for cancer patients

Author: Karen Luxford and Jane Fletcher
Details:

1. National Breast Cancer Centre
2. National Cancer Control Initiative

Email address: Karen.Luxford@nbcc.org.au

Abstract

Australia has taken an international lead in recognition of the importance of psychosocial care for cancer patients and in the associated development of evidence-based best practice recommendations. The guidelines provide practical advice to health professionals about effective psychosocial interventions to alleviate the significant burden experienced by patients. Strategies have been undertaken nationally to promote adoption of best practice recommendations across a number of psychosocial guideline areas. Current and future initiatives should aim to further promote the integration of psychosocial care into mainstream cancer care.


The diagnosis and treatment of cancer is associated with significant emotional morbidity.1 Research indicates that cancer patients experience elevated levels of depression and anxiety.1,2 Although the psychological consequences of cancer are significant, they frequently go undetected and untreated.3 Australia has taken a leadership role in promoting the importance of psychosocial issues for cancer patients and in many areas has established world-first best practice recommendations.

Australian initiatives

In recognition of the importance of psychosocial issues, the National Breast Cancer Centre (NBCC) launched the Psychosocial Clinical Practice Guidelines: information, support and counselling for women with breast cancer in 2000.4 These guidelines provided the first comprehensive overview of the emotional impact of breast cancer and included evidence-based recommendations about the provision of optimal psychosocial care.

Many of the psychosocial concerns of women with breast cancer are also key issues for adults with other cancers. Hence, the NBCC and the National Cancer Control Initiative (NCCI) developed the Clinical practice guidelines for the psychosocial care of adults with cancer,3 which were launched by the then Federal Health Minister Kay Patterson in August 2003. Based on the NBCC’s guidelines for psychosocial care of women with breast cancer, the generic psychosocial guidelines were funded by the Australian Government Department of Health and Ageing (DoHA). Both sets of National Health and Medical Research Council (NHMRC) approved guidelines were developed by multidisciplinary working groups, with consumer involvement, based on systematic reviews of research and benefited from the NHMRC recommended public consultation process and independent review.

Clinical practice guidelines for the psychosocial care of adults with cancer3 were the first of their kind in the world to describe the emotional, psychological and practical impacts of Australia’s leading forms of cancer including breast, colorectal, gynaecological, lung, melanoma, prostate, urogenital and non-Hodgkin’s lymphoma. Pancreatic and head and neck cancers were also included given the high mortality attached to pancreatic cancer and the high morbidity to head and neck cancer. Typically, best practice recommendations focus on the diagnostic or treatment aspects of care. It is recognised that the oncological aspects of care are changing with increasing rapidity, with new research emerging daily. Hence, it was intended that the psychosocial guidelines should be of practical value, summarise key research and include evidence-based recommendations to assist health professionals who deal with cancer patients from diagnosis through treatment and palliative care. The importance of uptake of these recommendations is emphasised by the fact that there appears to be a greater amount of high level evidence about beneficial psychosocial interventions than there is for many traditional aspects of care management such as treatment.

The guidelines provide information about how to improve psychosocial outcomes using techniques to increase patient recall and understanding, prepare patients for procedures they are about to undergo and identify patients at risk of psychosocial distress. They also include cognitive behavioural techniques to decrease anxiety, distress and reduce symptom burden (eg. pain control) and discuss the management of depression through combined therapies including supportive psychotherapy and pharmacotherapy. In addition they cover appropriate service referral and issues requiring specialist consideration.

The guidelines have received international attention with the International Union Against Cancer (UICC) acknowledging their international significance. Several countries have requested permission to use them in their own local programs to encourage improvement in psychosocial care.

Promoting awareness and uptake of best practice

Clinical practice guidelines for the psychosocial care of adults with cancer3 have been widely disseminated and well received to date. Added to an effective dissemination strategy, active implementation of the guidelines was seen as paramount to their success.

Although there is some evidence about the implementation of clinical practice guidelines, most of the data relates to guidelines that focus on the diagnostic or treatment factors of specific diseases.5 Implementation of the Clinical practice guidelines for the psychosocial care of adults with cancer3 poses a unique challenge. Unlike other implementation strategies, the aim when implementing guidelines such as these is to enhance knowledge and awareness of health professionals who may not regard psychosocial care as their core business.6 In effect the aim of implementation is three-fold: to raise awareness of psychosocial issues; to improve knowledge about effective interventions; and to assist in the provision of strategies to deliver these outcomes.

Given the importance of the material contained in the guidelines and the challenges of implementation, DoHA provided support to the NCCI in early 2003 to develop, in conjunction with the NBCC, an active multifaceted implementation strategy. A multidisciplinary steering committee was established and a four-module implementation strategy developed. This strategy included interactive educational workshops (module 1), health professional summary cards (module 2), consumer strategy (module 3) and a rural and remote strategy (module 4).  Funding for modules 1 and 2 of the four-module strategy was approved in July 2004.

In late 2004, a nationwide series of interactive educational workshops was conducted to promote the guidelines. These workshops were undertaken in New South Wales, the Northern Territory, Queensland, South Australia, Tasmania, Victoria and Western Australia. Over 300 clinical and allied health professionals attended the workshops. The primary audience was medical specialists, such as medical and radiation oncologists and surgeons. They focused on education relating to the psychosocial issues faced by cancer patients and their families. The secondary audience for the workshops comprised other health professionals including general practitioners, nurses, social workers, psychologists, psychiatrists, occupational therapists, physiotherapists and pharmacists. The workshops were open to all health professionals dealing with cancer patients. The same format was used in each state and territory with each workshop including a local consumer speaking about their cancer journey. This was followed by presentations on the emotional impact of cancer, gaps in service delivery and the development of the guidelines. Two case vignettes were presented and the second hour of each workshop contained a multidisciplinary panel discussion around a hypothetical case. Panel members represented the wide range of disciplines involved in psychosocial care in an oncology setting.

Pre and post evaluation of the educational workshops was based on improvements in attendees’ attitudes, knowledge and confidence in dealing with psychosocial issues. The evaluation, using self-report questionnaires, was performed at three time points: pre workshop, immediately post workshop and three months post workshop. Familiarity with the guidelines improved post workshop and was maintained at three-months. Improvements were seen on questions relating to knowledge of psychosocial risk factors and treatments, referral networks, the identification of minor and major disorders and the psychosocial outcomes of cancer.  Improvements in confidence in relation to referral, the assessment of suicide risk and the identification and management of depression and anxiety among cancer patients were observed.

In addition to the interactive educational workshops, health professional summary cards were developed. Given the size of the guidelines it was seen as unrealistic to expect all clinicians involved in cancer care to read the full version of the document.  In addition there is evidence to suggest that increased uptake of guideline information can be achieved if the key points are distilled into a useable format.7,8 Therefore the card contains summaries of key sections within the guidelines and includes information on the psychosocial issues facing people with cancer, communication skills, types of interventions available, referral for specialist care and prompts to explore and respond to specific concerns. The card represents a concise summary of the guidelines and has been developed using a multifaceted approach, including extensive focus group testing and consultation with the target audiences.

The card is suitable for use by a wide range of health professionals including general practitioners, medical and radiation oncologists, surgeons, nurses, occupational therapists, physiotherapists, psychiatrists, psychologists, social workers and any other health professionals dealing with oncology patients. It has been disseminated to these and other relevant groups.

Evaluation of the health professional summary card was undertaken by self-report questionnaire distributed with the August 2005 edition of Marryalyan, the COSA newsletter. Increased familiarity with psychosocial issues, knowledge of psychosocial risk factors, treatment, referral for specialised care and psychosocial issues in relation to cancer were reported as a result of reading the summary card. Confidence in the ability to identify distress, communicate with patients and refer to an external service was also increased. The majority of respondents rated usefulness, relevance, layout, readability and content of the summary card in a positive manner.

A further application has been made to DoHA for funding of a consumer and rural and remote strategy to implement the guidelines. At present other funding options are being considered.

Additional strategies to promote psychosocial care

Psychosocial care was considered an integral component of the national multidisciplinary care demonstration project conducted by the NBCC. To promote an integrated approach to patient care participating hospitals were encouraged to include supportive care staff (such as breast care nurses or psychologists) as core team members at care planning meetings. At the completion of the project, staff reported that patients were more frequently referred for psychosocial care and patients reported that coordination of care and provision of support and information for women had increased. The follow-up survey demonstrated that many changes initiated in this project were sustained.

The NBCC has promoted the evidence of benefit gained from this Australian project and studies from overseas in a recent national forum series for professionals and service administrators, which included highlighting the importance of psychosocial care in multidisciplinary teams. The forums were well attended with participants suggesting local and state level strategies to improve care provision.

Other guidelines

Following on from recommendations about early breast cancer, the NBCC developed Clinical practice guidelines for the management of advanced breast cancer.9 In recognition of the importance of psychosocial care, extensive information about the psychosocial impact of advanced breast cancer appears first in the guidelines before the expected recommendations about management of clinical issues. The guidelines are supported by a literature review of the emotional impact of advanced breast cancer.

To promote the adoption of the guidelines a national seminar series was conducted. An interactive panel discussion was held at each seminar, including open discussion about the psychosocial impact of advanced breast cancer for women and their families. This discussion enabled health care professionals to raise issues experienced with local service delivery and to consider ways in which these services might be improved.

In addition to guidelines and education for clinicians, the NBCC includes information on effective supportive care approaches in guides developed for women diagnosed with breast cancer.

The need to integrate conventional patient management with psychosocial care is clearly illustrated in the NBCC Clinical practice guidelines for the management and support of younger women with breast cancer.10 Released in 2004, the NHMRC approved guidelines acknowledge that the impact of a diagnosis of breast cancer and the treatment considerations for a woman aged 40 years or younger may be quite different from those of an older woman with this disease. Younger women are also more likely to experience psychological distress. Issues of body image, sexuality and fertility are especially significant for younger women.

Focusing on a specific patient characteristic (in this case, younger age), the guidelines follow the patient journey from pre-diagnosis (risk factors and detection), through diagnosis and treatment, to transition to palliative care. At each stage of the journey the psychosocial aspects are also addressed. For example, information about systemic adjuvant therapy for younger women is accompanied by information about younger women experiencing poorer adjustment than older women and recommendations about advising younger women about the consequences of therapy for their fertility.

The guidelines also recognise that clinicians managing younger patients can in turn experience elevated levels of stress. Research indicates that doctors often distance themselves in this situation and the guidelines recommend participation in communication skills training to assist with knowing how to respond to specific patient needs. The NBCC will be holding training workshops in 2006 specifically aimed at helping health professionals communicate with younger patients.

Where to from here?

There is still some way to go before we have a truly comprehensive multidisciplinary approach to cancer care. Although this approach is already undertaken by a number of the larger cancer centres and specialist clinics across the country, in many places psychosocial care is still considered an ‘after thought’ or optional extra ‘time permitting’. Given the major burden these issues represent – with up to 30% of cancer patients experiencing clinically significant anxiety disorders and up to 35% experiencing depression,1,2 and that patient satisfaction with their care is improved when supportive care issues are addressed, it would appear timely to consider active approaches to integrating all aspects of care.

As a new initiative the NBCC is currently developing a tool to encourage discussion of psychosocial issues at multidisciplinary treatment planning meetings for cancer patients. The tool will provide a checklist to promote discussion during the meeting of factors highlighted in the psychosocial guidelines as putting patients at increased risk of psychosocial problems (eg. young age, advanced disease). The tool also aims to encourage appropriate referral of patients considered at high risk of adverse psychosocial outcomes.

Currently, we know very little about the national state of psychosocial care for Australian cancer patients. There has been considerable focus in recent years on minimum clinical data sets and clinical audits, but these data collections typically fail to include items reflecting significant psychosocial aspects of patient care. In recognition of this gap, the NBCC is developing a limited number of generic psychosocial items that could be included nationally in clinical data sets to benchmark and review progress in supportive care provision.

There is also a growing interest in the interdisciplinary training of clinicians to better reflect the work environment of many health professionals. Although we are already witnessing this approach in some undergraduate courses, it rarely occurs in continuing professional development programs. There are opportunities in the ongoing education of cancer care professionals to consider integrated training packages, particularly in aspects of psychosocial care crucial to all stages of the patient journey.

References

1. Zabora J, BrintzenhofeSzoc K, Curbow B, Hooker C, Piantadosi S. The prevalence of psychological distress by cancer site. Psychooncology. 2001;10(1):19-28.

2. Bodurka-Bevers D, Basen-Engquist K, Carmack CL, Fitzgerald MA, Wolf JK, de Moor C, et al. Depression, anxiety, and quality of life in patients with epithelial ovarian cancer. Gynecol Oncol. 2000;78(3 Pt 1):302-8.

3. National Breast Cancer Centre, National Cancer Control Initiative. Clinical practice guidelines for the psychosocial care of adults with cancer. Camperdown, NSW: National Breast Cancer Centre; 2003.

4. National Breast Cancer Centre. Psychosocial clinical practice guidelines: providing information, support and counselling for women with breast cancer. Woolloomooloo, NSW: National Breast Cancer Centre; 2000.

5. Feder G, Griffiths C, Highton C, Eldridge S, Spence M, Southgate L. Do clinical guidelines introduced with practice based education improve care of asthmatic and diabetic patients? A randomised controlled trial in general practices in east London. BMJ. 1995;311(7018):1473-8.

6. Turner J, Zapart S, Pedersen K, Rankin N, Luxford K, Fletcher J. Clinical practice guidelines for the psychosocial care of adults with cancer. Psychooncology. 2005;14(3):159-73.

7. McColl A, Smith H, White P, Field J. General practitioners’ perceptions of the route to evidence based medicine: a questionnaire survey. BMJ. 1998;316(7128):361-5.

8. Stone TT, Kivlahan CH, Cox KR. Evaluation of physician preferences for guideline implementation. Am J Med Qual. 1999;14(4):170-7.

9. National Breast Cancer Centre Advanced Breast Cancer Working Group. Management of advanced breast cancer. Woolloomooloo, NSW: National Breast Cancer Centre; 2002.

10. National Breast Cancer Centre. Clinical practice guidelines for the management and support of younger women with breast cancer. Camperdown, NSW: National Breast Cancer Centre; 2004.

This page was last updated on : Wednesday, 6 May 2009

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