Clinical practice guidelines for the psychosocial ... - Wiley Online Library

PSYCHO-ONCOLOGY

Psycho-Oncology 14: 159–173 (2005) Published online 24 January 2005 in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/pon.897

CLINICAL PRACTICE GUIDELINES FOR THE PSYCHOSOCIAL CARE OF ADULTS WITH CANCERz,},} JANE TURNERa,*, SIGGI ZAPARTb,y, KAREN PEDERSENc, NICOLE RANKINd,y, KAREN LUXFORDe and JANE FLETCHERf a

b

Department of Psychiatry, University of Queensland, Australia Centre for Health Economics Research and Evaluation, University of Technology, Sydney, Australia c National Cancer Control Initiative, Melbourne, Australia d Cancer Institute New South Wales, Australia e National Breast Cancer Centre, Sydney, Australia f National Cancer Control Initiative, Melbourne, Australia SUMMARY

Clinical practice guidelines are increasingly being developed in medical settings to provide evidence-based recommendations to guide the clinical care of patients. The development of Clinical practice guidelines for the psychosocial care of patients with medical illness is a newer initiative, and more complex as the target audience includes health care professionals from diverse backgrounds. In Australia, the National Breast Cancer Centre and National Cancer Control Initiative have collaborated to develop Clinical practice guidelines for the psychosocial care of adults with cancer, funded by the Australian Government Department of Health and Ageing. This paper outlines the development of these guidelines in the international context, gives an overview of their content, and describes strategies for their implementation and evaluation. Copyright # 2005 John Wiley & Sons, Ltd.

WHAT ARE CLINICAL PRACTICE GUIDELINES? Clinical practice guidelines are in essence a summary of the best available scientific evidence, *Correspondence to: Department of Psychiatry, K Floor, Mental Health Centre, HERSTON, 4029, Australia. E-mail: [email protected] y Formerly of the National Breast Cancer Centre, Sydney, Australia. z On behalf of the Development and Implementation Steering Groups of the Clinical practice guidelines for the psychosocial care of adults with cancer. } These Guidelines were developed by the National Breast Cancer Centre, Sydney Australia, and the National Cancer Control Initiative, Melbourne, Australia. } A letter to the Medical Journal of Australia has made reference to the Guidelines in the context of the provision of palliative care services, and a brief summary for general practitioners has been published in Australian Family Physician. There has been no detailed publication about the Guidelines.

Copyright # 2005 John Wiley & Sons, Ltd.

presented in a format which is useful to guide clinical decision-making. Clinical practice guidelines can improve the quality of health care through the promotion of effective treatments, based on rigorous evaluation of their efficacy, as well as assist in the reduction of unnecessary, ineffective or harmful interventions. (NHMRC, 1999). The National Health and Medical Research Council (NHMRC), the peak scientific advisory and research committee in Australia, recommends that Clinical practice guidelines should be outcome focused, incorporate the best available evidence, and be developed by a multidisciplinary group which includes consumers. In addition, it is necessary to include clinicians who have the capacity to ‘translate’ scientific research findings into clinically relevant and appropriate recommendations (NHMRC, 1999). Clinical practice guidelines have their detractors, some expressing concern that they reduce physician autonomy (Farquhar et al., 2002), are oversimplified and lead to ‘cookbook’ medicine (Graham et al., 2000), Received 3 April 2004 Accepted 22 November 2004

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others considering that they may lead to increased litigation (Gattellari et al., 2001). In contrast, there is evidence that Clinical practice guidelines can improve the quality of medical practice (Grimshaw and Russell, 1993). Furthermore, a comprehensive review commissioned by the National Breast Cancer Centre (NBCC) in Australia reported that clinical practice guidelines ‘neither hinder, nor encourage litigation directly’ (Tito and Newby, 1998).

THE NEED FOR PSYCHOSOCIAL GUIDELINES AND THEIR CURRENT STATUS Why do we need Psychosocial Guidelines? Health professionals with psychosocial training who work with cancer patients are well aware of the extent of emotional morbidity experienced by patients and their families as they adjust to the diagnosis and treatment of their disease. Accepted prevalence rates of 23.5% for mental disorders (Harter et al., 2001), and higher distress amongst those with greater disease burden and poorer prognosis (Zabora et al., 2001) confirm that this is an enormous problem. Increasingly too, there is recognition of the complex issues facing people who survive cancer, including the meaning of the cancer experience, changes in roles and relationships (Dow et al., 1999), and often changes in employment status (Hewitt et al., 1999). The enormity of the psychosocial burden faced by patients with cancer, combined with increasing expectations of patients that the emotional dimensions of their experience will be addressed, poses a dilemma for health care professionals. Many have received only rudimentary training in psychosocial issues, and lack the time or expertise to seek out appropriate information about how best to provide psychosocial support for their patients. Indeed, the rapid advances in oncology makes keeping abreast of even ‘core’ topics difficult. Compounding this difficulty are often entrenched stereotypes that psychosocial interventions are of limited value. It is easy to dismiss psychosocial descriptive research based on ‘small n’ populations in single institutions if one is used to appraising multi-centre trials involving cohorts of many hundreds of patients. The extent to which health professionals share the prejudices of the general


public about psychosocial treatments is unclear, but data from the UK indicating that 78% of people in one community survey regarded antidepressants as addictive (Priest et al., 1996) highlights the difficulties which may face the clinician who wishes their patient to accept specialized psychosocial treatment. In this context, guidelines summarizing key psychosocial literature and providing evidence-based recommendations about clinical care of patients are of considerable practical value for health professionals working in oncology. Furthermore, when implemented, guidelines can assist health professionals in the early identification of patients who are most vulnerable, so that they can be offered appropriate psychosocial interventions, with the aim of reducing morbidity, and most efficiently using highly specialized services which are often limited in number. What Psychosocial Guidelines currently exist? Internationally, there have been concerted efforts to provide health professionals with appropriate evidence-based recommendations to enhance psychosocial care of cancer patients. In the United States, the National Comprehensive Cancer Network has developed Distress Management Practice Guidelines (NCCN, 1999). These guidelines, developed by a multidisciplinary panel, give recommendations to guide care of cancer patients who are distressed, depending on the primary source of distress, which might range from delirium to substance abuse or personality disorder, to physical problems such as fatigue. The panel advocates use of a rapid screening of patients for distress (using a patient-scored analogue scale called a ‘Distress Thermometer’), in conjunction with a problem list to clarify sources of distress so that appropriate referral may be made (Holland, 2004). Although a brief list of references is provided, there is no detailed inclusion of recent research; instead the aim is clearly to provide a practical tool for busy clinicians. The use of the term ‘Distress’ in relation to these guidelines is an explicit attempt by the panel to reduce the stigma related to psychosocial issues. Also in the United States, the National Cancer Institute, under the auspices of the US National Institutes of Health, operates a comprehensive on-line cancer information database. Peer-reviewed summaries of pertinent psychosocial issues such as depression,

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anxiety, loss and grief and bereavement are presented as physician data query (PDQ) statements. For example, the PDQ for depression outlines the nature of the condition in cancer patients, its frequency, common misperceptions about depression, and overviews treatment modalities. In the UK, the NHS has established the National Institute for Clinical Excellence (NICE), an independent organization charged with developing national guidance on treatments and care for people using the NHS, including cancer. Guidelines are produced by an independent development group, which evaluates the evidence and makes recommendations, including a ‘quick reference guide’ and a consumer version. NICE has produced guidelines on psychosocial aspects of cancer care: Improving Supportive and Palliative Care for Adults with Cancer (National Institute for Clinical Excellence, 2004). This is a detailed and comprehensive set of recommendations, policy statements, and economic evaluation, supported by reviews of the literature, and with a strong emphasis on models of service delivery. Specific chapters include communication, psychological and social support, spiritual support and issues related to families and carers. The Canadian Association of Psychosocial Oncology has developed National Psychosocial Oncology Standards (CAPO, 1999). This document sets the scene for standards of care in clinical settings, but does not focus on recommendations for specific components of clinical care, for example the identification or treatment of depression. The Clinical practice guidelines for the psychosocial care of adults with cancer have some features in common with the above guidelines, but differ in emphasis and scope. A central theme of these guidelines is the provision of practical suggestions to guide clinicians in broaching psychosocial issues, and the provision of extensive detail about specific psychosocial treatments which can be delivered by clinical psychologists, psychiatrists, social workers, nurses and other clinical groups who have received specific training. These guidelines also include specific recommendations about approaching particular aspects of clinical treatment, for example discussing prognosis, and preparation for potentially threatening procedures. In contrast to the Distress Guidelines above, these guidelines incorporate descriptions


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of supporting evidence and detailed references throughout the text of the document. Clearly the development of Clinical practice guidelines to assist in the psychosocial care of patients with cancer is seen internationally as a priority, but there is a risk of replication and overlap with existing resources and collation of information about existing resources will serve to improve service delivery and guide new developments. The International Psycho-Oncology Society seeks to take a global perspective in the promotion of psychosocial care in oncology, including petitioning the World Health Organization to become a participatory NGO (Holland, 2004). The development of Clinical Practice Guidelines for the psychosocial care of adults with cancer The development of Clinical practice guidelines for the psychosocial care of adults with cancer was undertaken collaboratively by the National Cancer Control Initiative (NCCI) and the National Breast Cancer Centre (NBCC). The impetus for the development of such Guidelines was provided in part by the successful development and implementation of Psychosocial clinical practice guidelines: information, support and counselling for women with breast cancer by the NBCC (National Breast Cancer Centre, 2000). Launched in 2000, these breast-cancer-specific guidelines provided a comprehensive overview of the emotional impact of breast cancer, and included evidence-based recommendations about the provision of optimal psychosocial care. As many of the psychosocial concerns of women with breast cancer are also relevant to adults with other cancers, it was considered appropriate to expand and revise the existing guidelines to develop the Clinical practice guidelines for the psychosocial care of adults with cancer (NBCC and NCCI, 2003). This initiative was undertaken by an expert working group comprised of clinicians and academics, and included consumer representation. The focus for these guidelines was defined as those cancers most commonly occurring in adults in the Australian context: colorectal, breast, prostate, melanoma, lung, gynaecological and NonHodgkins’ Lymphoma. Although less common, head and neck cancers and pancreatic cancer were included because of their high psychosocial morbidity.


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Comprehensive literature reviews underpinned the development of Psychosocial clinical practice guidelines: information, support and counselling for women with breast cancer, supplemented by specific studies commissioned by the NBCC. Reviews included the following aspects of care: the nature and severity of the emotional impact of cancer on the emotional well-being of people with cancer, including how to identify those who may benefit from additional psychosocial support; psychosocial support that is appropriate to be offered by members of the oncology treatment team; and psychosocial support and interventions to be offered by specialist service providers such as psychologists, psychiatrists or others (Turner et al., 1998; Burke and Kissane, 1998a, b). The additional commissioned reviews were:}strategies for breaking bad news, discussing treatment options, preparing patients for potentially threatening procedures, and discussing prognosis (Bonevski and Cockburn, 1996, 1997a, b; Lobb et al., 1998). Members of the expert working group extracted data from each study using a structured proforma to describe the design and quality of the study, assigning a rating of the quality of evidence, using the scale recommended by the NHMRC’s Standing Committee on Quality of Care and Health Outcomes (NHMRC, 1999). This rating scale, adapted from the US Preventive Services Task Force, assigns levels of evidence as follows: Level I}Evidence from systematic review of all relevant randomized controlled trials. Level II} Evidence from at least one properly designed randomized controlled trial. Level III-1}Evidence from a well-designed pseudorandomized controlled trial (alternate location or some other method). Level III-2}Evidence from comparative studies with concurrent controls and allocation not randomized (cohort studies), case control studies, or interrupted time series with a control group. Level III-3}Evidence from comparative studies with historical control, two or more single-arm studies, or interrupted time series without a parallel group. Level IV}Evidence obtained from case studies, either post-test or pre and post-test. Where appropriate, these reviews have been utilized in the development of Clinical practice guidelines for the psychosocial care of adults with cancer, supplemented with the most recent literature for the major adult cancers, and


expanded to include comprehensive reviews of other pertinent topics including fertility, body image and sexuality, survival and wellness, fatigue, gender differences in response to cancer, and needs of partners. The guidelines underwent an extensive consultation process. Advertisements were placed in national newspapers advising of the development of the guidelines in draft from, and inviting public submissions. In addition, the draft guidelines were sent to relevant experts, representatives of the professional Colleges, and consumer representatives, inviting feedback. The expert working group modified the draft guidelines based on submissions received. The guidelines were approved by the NHMRC, launched in August 2003, and have been disseminated to medical and radiation oncologists, surgeons, consultation-liaison psychiatrists, palliative care centres and cancer treatment centres across Australia. It is anticipated that an updated version will be completed by 2008, in accordance with NHMRC recommendations (NHMRC, 1999).

OBJECTIVE AND SCOPE OF THE GUIDELINES These guidelines were specifically developed to assist members of the treatment team such as surgeons, oncologists, nurses, allied health professionals and general practitioners to develop increased understanding of the psychosocial issues facing their patients, and provide them with practical, evidence-based recommendations which can be incorporated into their routine clinical care of patients with cancer. The guidelines are designed for use during all phases of cancer care, from diagnosis, through initial decision-making, active treatment and follow-up and survival, or disease progression and palliative care. The guidelines are not inclusive of issues relating to screening, nor prevention of cancers. Although social workers, psychologists, psychiatrists and counsellors are aware of the many emotional issues facing their patients, they will also find the guidelines useful, as they provide a summary of the best available evidence which is likely to be of assistance in staff training, the development of protocols to guide referral, and may even serve as the basis for quality-improvement or audit tools.



STRUCTURE OF THE GUIDELINES The guidelines are structured to provide contextual information first}a broad overview of the emotional impact of cancer, a description of the development of the guidelines, and discussion of the emotional impact of cancer care on health professionals themselves. The second chapter provides more detailed information about the challenges that cancer poses for individuals and families, including such issues as social needs, practical and financial needs, and psychological concerns, and patterns of response to these issues. The aim of this chapter is to assist health professionals to gain a more sophisticated understanding of the emotional dimensions of the cancer experience, and so be ‘primed’ to respond empathically to patients. The third chapter is the largest, and provides evidence and recommendations to guide clinicians in different phases of diagnosis and treatment, for example giving the diagnosis, discussing prognosis, discussing treatment options. In addition, this chapter gives recommendations about the psychosocial assistance which can be provided by all members of the treatment team, to reduce distress of patients. The following chapter moves beyond routine support, to provide information and recommendations about detection and treatment of disorders such as anxiety and depression, including making specialist referrals, whilst the final chapter addresses overarching themes of culture, age, geographic isolation and access to services, and sexual orientation. The full document can be accessed free of charge on: http://www.nhmrc.gov.au/publications/pdf/cp90.pdf As the scope of the Guidelines is extensive, what follows is an overview of some of the evidence and key recommendations.

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patients (Devine and Westlake, 1995). There is acknowledgement of the often considerable stress experienced by health professionals who treat patients with cancer (Whippen and Canellos, 1991), including discussion of strategies that may assist staff, such as making full use of the expertize of the multidisciplinary team (Horowitz et al., 1994). A summary of guideline recommendations is provided, including the level of evidence assigned to each. CHAPTER 2: UNDERSTANDING THE CHALLENGES OF CANCER AND HOW PEOPLE REACT If health professionals are well-informed about the psychosocial issues facing patients with cancer, they are in a better position to make appropriate enquires and respond sensitively to the needs of their patients. Key points raised in the guidelines include: Emotional and social issues The extent to which a person with cancer feels supported is a key factor affecting adjustment (Ell et al., 1989). Distress levels of partners of cancer patients may be considerable, sometimes even higher than that of patients themselves (Cliff and McDonagh, 2000; Northouse et al., 2000). In addition, children of patients with cancer may be in need of support, their needs depending on their developmental stage (Compas et al., 1994). Thus, clinicians are advised that they should routinely check on the support needs of both}patients and their families or carers, rather than assuming that the family is able to offer the patient the support they need. Psychological issues

CHAPTER 1: INTRODUCTION AND BACKGROUND The objectives and scope of the guidelines are described, along with an overview of the ratings system applied to the scientific literature (NHMRC, 1995), to emphasize that the recommendations are based on sound evidence, and that psychosocial interventions are of clear benefit for


Concerns about body image relate not just to ‘missing body parts’ (Hopwood, 1993), but include complex changes to the person’s perception of themselves as a social being. Although obvious that some cancers would be associated with concerns about sexual functioning, sexuality issues will be relevant for many people, including those diagnosed with cancers that do not directly involve the sexual organs. This is exemplified by research


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involving patients treated surgically for head and neck cancers, which has found that overall, 25% of patients experience changes in self-image, increasing to 57% for those with major disfigurement (Gamba et al., 1992). Sexual problems can persist over time and are reported to be a major stressor and associated with anxiety (Kunkel et al., 2000). For example, men treated for testicular cancer describe sexual difficulties many years after treatment (Arai et al., 1997), indicating that there is a need for ongoing monitoring of symptoms and concerns. The extent of distress is emphasized by the evidence that up to 23% of patients are reported to have anxiety (Harter et al., 2001), with depression leading to additive impairment in social and vocational functioning (Katon and Sullivan, 1990), as well as undermining the capacity to cope with disease burden. Physical issues Central to the guidelines is the premise that physical concerns and symptoms and psychological adjustment are intimately related. Physical concerns may adversely affect quality of life, and may lead to more serious conditions such as depression (Newell et al., 1999). Concerns about fertility are described in detail, as there is evidence that health professionals do not fully discuss this with all patients (Schover et al., 1999). Other subjects which merit attention are pain, lymphoedema, disfigurement, incontinence and bowel symptoms, odour, as well as nutrition, oral care, swallowing and respiration. Dyspnoea, for example, is discussed because of its clinical significance}it is frequently undertreated (Farncombe, 1997), yet it is a potent generator of anxiety (O’Driscoll et al., 1999). It is also important to recognize and respond to cognitive difficulties and problems with communication, as these may profoundly affect coping for the patient and their family. Practical needs and financial issues Practical issues have the potential to exert a profound influence on patients’ lives. The need to relocate from a rural area to receive specialist treatment poses a significant burden for patients (McGrath et al., 1999), as does change


in employment status. Studies have shown that up to 50% of those who have a laryngectomy do not return to full-time employment, and more than half report financial problems (Lehmann and Krebs, 1991). Other key practical concerns are discussed, including access to prostheses and aids, and financial concerns, with the aim of alerting health professionals to the range of concerns which may affect patient adjustment.

Towards the end of life issues Physical symptoms exert a powerful influence on quality of life, particularly when cancer is advanced. Social support at this time has a positive impact on adjustment (Giese-Davis et al., 2000), as does open emotional expression (Classen et al., 1996). This is especially pertinent in regard to the needs of families, where there may be avoidance of discussion about the seriousness of the situation because of uncertainty about what to say (Given and Given, 1992). Attention to existential concerns is also discussed, as these have been reported to be at least as important as the physical, psychological and social support domains in determining quality of life (Cohen et al., 1995). However discussion of these issues is often a source of discomfort for health professionals.

Survival issues In view of improved survival rates for many cancers, health professionals need to recognize that survival may often have come at considerable emotional and physical cost (Gotay and Muraoka, 1998). Evidence about the physical, psychological and sexual issues arising for cancer survivors is described. Fatigue, for example, is largely ‘invisible’, yet is often severe (Servaes et al., 2001), interferes with daily life (Molassiotis and Morris, 1999), and is frequently underreported (Curt et al., 2000). Patients may be reluctant to volunteer symptoms for fear that they may be seen as ungrateful, or because they assume that nothing can be done. The guidelines prompt health professionals to be aware of such issues, and to take the initiative in making appropriate enquiry about residual symptoms and concerns.



CHAPTER 3: CARE WHICH CAN BE PROVIDED BY THE TREATMENT TEAM TO ALL PATIENTS WITH CANCER Good communication is fundamental to the provision of psychosocial support. All health professionals involved in patient care need such skills to optimally discuss issues of concern for patients and their families. The following is an outline of the specific communication and emotional support issues which arise at different stages of cancer diagnosis and treatment. General interactional skills Core components of communication techniques include the expression of empathy, use of open questions, and active listening. Simple strategies such as repeating and summarizing key information (Ley and Llewelyn, 1992), actively encouraging questions (Cockburn, 1997), and providing written information (Ley and Llewelyn, 1992) have been demonstrated to improve patient recall of information, and satisfaction. Providing information

Telling a person they have cancer, a recurrence or metastases. In an oncology setting, one of the most difficult tasks is informing the patient that they have cancer, or that the cancer has recurred, and there is discussion of strategies to assist in these difficult interactions. Information should be tailored to the needs of the individual patient. Many patients indicate that they would like more information than they received, particularly about their test results and prognosis (Sardell and Trierweiler, 1993). Similarly, there is variability in the desire of patients to have someone with them when the diagnosis is given (Williams et al., 2002; Kim and Alvi, 1999), so it is appropriate to check with each patient regarding their preference. Discussing prognosis. Limited evidence exists to guide recommendations about the optimal timing of provision of prognostic information. Research with women with breast cancer suggests a preference that this be discussed at the first visit (Lobb et al., 1998), however people’s preferences for


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information change over time (Butow et al., 1997). Research suggests that more patients prefer positive framing (chances of surviving) (Lobb et al., 1998) when prognostic information is given, however negative framing (chance of the person dying) is commonly used by oncologists (Hughes, 1993). Furthermore, clinicians need to check each patient’s understanding, as many people will not understand information about risk expressed as probabilities (Lloyd et al., 2001). Discussing treatment options: providing information and choice. Patients often want more information than they are given about cancer and potential treatments (Jenkins et al., 2001). Concerns of health professionals that ‘too much information’ could adversely affect patients do not appear to be well-founded. On the contrary, women with breast cancer who felt they had been poorly informed were twice as likely to be depressed and/or anxious 12 months after diagnosis than those who felt they had been adequately informed (Fallowfield et al., 1990). An appreciation of the multiple factors which influence patient’s choices about treatment such as demographic variables}age, sex, financial status, educational level, and geography (Nuffield Institute for Health, 1996), as well as media, family and friends (Valanis and Rumpler, 1986), and concerns about body image (Kumar et al., 1992), may assist the clinician in exploring and discussing treatment decisions. Emerging evidence about the factors which may influence patient participation in clinical trials will be of interest to clinicians, particularly as many of these relate to simple communication strategies. Preparing patients for potentially threatening procedures. Adequate preparation for procedures and treatments such as radiotherapy or chemotherapy can reduce anxiety, and lead to faster recovery, with fewer complications (Johnston and Voegele, 1993). The provision of detailed information about what the patient will feel is important in assisting patients to cope with procedures (Hathaway, 1986). Preparing patients for progression from curative to palliative treatment. The transition from curative to palliative aims of treatment is clearly a time of distress for patients. Clinicians often find the demands of communication at this time


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enormously challenging, so suggested prompts are provided to assist the clinician in exploring the patient’s specific concerns about their illness and the future. Clinicians are reminded of the need to convey a message to the patient that this transition does not imply discontinuation of active care aimed at treating symptoms and enhancing quality of life. Directing people to quality information on the Internet. The Internet is increasingly being used by patients and families for information and contact with others who have experienced similar problems (Pautler et al., 2001). The sites vary considerably in their quality, and advice is given about assessing the quality of Internet sites. Emotional and social support Emotional support is central to cancer care, and is not just the province of psychologists or social workers. There is evidence that people with cancer who are provided with the opportunity to discuss their feelings with a member of the treatment team have less distress than those not afforded this opportunity (Devine and Westlake, 1995). It is important to enquire about partners and families, as there is evidence that they are also vulnerable to distress (Compas et al., 1994). The potential benefits of other sources of support, such as peer support programmes, are also addressed. Practical and financial support Cancer treatment for many patients necessitates the use of prostheses, continence aids, erectile dysfunction aids, laryngectomy aids, wigs or reconstructive surgery. Open discussion about these topics is important, and suggested prompts are provided to assist health professionals to sensitively explore these issues. Ensuring continuity of care Treatment for cancer may involve referral to a variety of specialists and services, sometimes across wide geographic areas, so it is essential that each patient feels able to identify a key health professional who is the coordinator of their care. In many instances this will be the general


practitioner, but emerging evidence suggests that nurses may effectively provide continuity of care for cancer patients (McArdle et al., 1996). Support towards the end of life The inter-relationship of physical symptoms and emotional distress is especially important towards the end of life, and health professionals need to understand the potential effectiveness of psychological techniques such as guided imagery and relaxation therapy to assist in the management of pain (Devine and Westlake, 1995) and reduction of anxiety. Recognition of grief and the provision of psychological support for the patient and their family are integral aspects of care towards the end of life (Kissane et al., 1998). Exploring and responding to specific concerns Despite awareness of the likely emotional concerns of patients, some health professionals feel awkward raising these issues clinically. Health professionals will find it invaluable to have access to the series of structured prompts in the guidelines, designed to assist them in discussion of the patient’s concerns. Detailed suggestions are also made to enable health professionals to introduce discussion of depression and anxiety, body image concerns, sexual and interpersonal problems. A reference table of factors associated with increased risk of psychological problems is provided (Table 3.7D, p. 98) to alert clinicians to monitor adjustment in such patients, or consider early referral for specialized support (NBCC and NCCI, 2003). CHAPTER 4: REFERRAL FOR SPECIALIZED CARE Specialized services such as psychology, psychiatry, social work and other allied services such as physiotherapy, speech therapy and occupational therapy have a central role in the care of patients with cancer. Appropriate referral and treatment can markedly improve physical well-being and functioning, with likely improvement in emotional well-being. Health professionals need to have an understanding of common conditions such as anxiety and depression, and awareness of effective treatment modalities. Those who are inadequately



informed about such issues will be less likely to accord appropriate consideration to these diagnoses, and less likely to be able to confidently discuss with patients the potential benefits of treatments or referral. Information is provided about pharmacotherapy in the treatment of anxiety and depression, including evidence of its tolerability (Chaturvedi et al., 1994), and effectiveness (Gill and Hatcher, 2000) in the cancer population. Evidence demonstrates that psychotherapy is an integral and effective component of the treatment of anxiety and depression (Twillman and Manetto, 1998; Sellick and Crooks, 1999). Many health professionals may have little knowledge of precisely what psychotherapy involves, and may find it helpful to learn that psychotherapy with patients with cancer usually involves attention to the unique meaning of the cancer for the individual, and their fears and concerns. Components may include facilitation of emotional expression and grief, coping skills training, or cognitive techniques to deal with distressing thoughts and feelings (Spiegel, 1996). A summary pathway is provided to guide provision of support and identification of disorder during the continuum of cancer care, as well as discussion about referral for specialized psychological care.

CHAPTER 5: ISSUES REQUIRING SPECIAL CONSIDERATION Cultural and linguistic diversity In Australia, as in many other developed countries, a significant proportion of the population do not have English as their first language. People from culturally and linguistically diverse backgrounds may experience difficulty in understanding the complexities of the health system, and accessing health care. Clinicians need to consider key issues of importance from a cultural perspective, as well as practical considerations such as the need for specialist interpreter services. Age Evidence suggests that younger patients are more vulnerable to psychosocial distress in the context of cancer (Ganz et al., 1993). It is clear that treating young patients with cancer is a source


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of distress for health professionals (Catalan et al., 1996), who may tend to avoid discussion of emotional issues with young patients. Such avoidance increases the risk that psychological distress will not be identified, nor receive an appropriate response. Stereotypical views about the psychosocial needs of older patients are common, and there is evidence of under-diagnosis and under-treatment of older patients with cancer (Korneck, 2001). Hence clinicians need to be sensitive in exploring the needs and treatment preferences of older patients. Geography Limited data suggests that patients from rural and remote areas have concerns similar to those experienced by patients living in urban areas. However the necessity of travel from home for specialist treatment, and disruption to normal social networks and supports may pose additional stress. A variety of models have been developed to provide cancer services in remote communities including shared care and outreach programmes, and tele-oncology (Campbell et al., 1999). Sexual orientation The needs of patients who identify themselves as homosexual have been overlooked in cancer research. General research indicates that those who are homosexual often experience discrimination, violence and social isolation (Harrison, 1996), and it is likely that any individual already facing such issues will find adjustment to cancer difficult. If health professionals have stereotyped views, lack sensitivity, or have limited knowledge of homosexual health issues they will be unable to assist their patients or provide information about health risks (Harrison, 1996). Psychosocial interventions reported as effective in the HIV/AIDS literature, in either an individual or group format, include psycho-educational interventions, cognitive-behavioural therapies, and supportive-expressive therapies (Catalan, 1995; Lutgendorf et al., 1994). STRENGTHS AND WEAKNESS OF THESE GUIDELINES Major strengths of these guidelines are their comprehensive nature (covering all aspect of


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cancer care from diagnosis and treatment, through to survival or disease progression and palliative care), and the clear and detailed presentation of the best available evidence to support the recommendations. This is particularly important in order to convince non-psychosocially trained health professionals of the merits of the recommendations. Perhaps the most outstanding and unique feature of these guidelines is the attempt to equip health professionals with some skills, in addition to provision of information. Convincing an oncologist, for example, of the merits of exploration of mood and psychosocial adjustment is of little benefit if the oncologist lacks the tools to enquire about these issues. The provision of detailed examples of specific questions and prompts which clinicians could adapt to their own practice is thus a practical and positive step in ensuring their uptake. Another practical strength of the guidelines is the inclusion of an appendix which gives recommendations for strategies to overcome barriers to effective psychosocial referral, directly addressing professional barriers, and stigma. A further strength is the strong emphasis on the inter-relationship of physical and psychosocial symptoms and the promotion of excellence of care being mutually beneficial. Countering this, there are gaps in the content of these guidelines, because there are some areas in which additional research is required before stronger evidence-based recommendations can be made. Some of these areas include sexuality and body image (especially in non-breast cancers), advanced cancer, and psychosocial interventions in palliative care. Others include the information and support needs of children with a parent with cancer, the provision of support for those seeking to establish new relationships after cancer, and support for the elderly patient with cancer. In instances where the issue is considered clinically important, the limited evidence available has been cited, along with documentation of its strength. Where appropriate, recommendations have been made, based on fundamental principles of communication and support. For example, broaching the transition from curative to palliative aims of treatment is important, yet poorly addressed in the literature. On the basis of this deficiency, the NBCC, through their National Communication Skills Training Strategy, has commissioned a separate review of literature in this area, to support the development of a communication skills training module on the topic.


Further, these guidelines have not attempted to address the structural barriers present in many health services in Australia, in which psychooncology services are not routinely integrated as part of mainstream cancer care. An Australian population-based survey of consumer perceptions of the provision of information and supportive care undertaken with women with early breast cancer has shown that psychosocial interventions for which there is evidence of benefit were accessible to only a small proportion of patients; for example, only 14% of women reported access to specialist breast nurses, and only 4% received an audiotape of a consultation with their medical specialist (Williams et al., 2002). The need to modify health-care systems to ensure that evidence-based supportive cancer care programmes are routinely available at the population level, rather than only as part of research trials, has been clearly articulated for the Australian setting (Redman et al., 2003). Guidance to implement models of supportive and palliative care for adults with cancer has also been addressed for the UK (NICE, 2004).

IMPLEMENTATION OF THE GUIDELINES There is an emerging body of literature describing the most effective strategies for implementation of Clinical practice guidelines, and it is clear that a multi-faceted approach is required. Uptake of guidelines is enhanced if they are endorsed by professional organizations (Cook and Giacomini, 1999), and local opinion leaders (Borbas et al., 2000). Professionals also need opportunities to participate in interactive educational workshops (Thomson et al., 1995), with an emphasis on problem-solving rather being the passive recipient of information (Ockewe and Zapka, 2000). There is also evidence that busy clinicians seek easy access to key evidence contained in guidelines (McColl et al., 1998), including the provision of algorithms suitable for translation into local practice (Tierney, 2001). Despite these findings, there remains a need for more extensive collaboration between the leaders of health care services and researchers in national cancer organizations, underpinned by funding support of government, to develop rigorous evaluation strategies and implementation strategies (Bero et al., 1998), so that the best scientific evidence can be translated into improved clinical care. A deficiency of the



literature on implementation of Clinical practice guidelines is the dearth of research on ways to encourage professional uptake of guidelines related to ‘non-core’ business. For example, encouraging surgeons to implement an evidencebased guideline about wound treatment is clearly made easier by virtue of the fact that the surgeon readily appreciates that wound care is central to their work. Convincing the same surgeon that enhanced skills in communication about prognosis, and detection of depression are ‘core business’ is a more complex task. A multidisciplinary Implementation Steering Group has been convened to oversee the implementation of these guidelines. Although brief mention of implementation is made in the text of the guidelines, the following section gives an overview of strategies developed in more detail following the launch of the guidelines. Module 1: interactive workshops Interactive educational workshops, targeting specialist oncology practitioners, will be held in each capital city in Australia by the end of 2004. Local opinion leaders and clinical champions will play a key role during these workshops, using a set of generic slides developed specifically for this purpose. The format of the workshop will include provision of information about the development of the guidelines, an overview of their scientific rigour, and presentation of consumer perspectives. A series of clinical scenarios will be presented, and linked to pertinent recommendations to highlight the clinical importance of the guidelines. A multidisciplinary panel discussion will allow for practical discussion about local implementation of recommendations. Evaluations will be conducted of workshop participants at Time 1 (pre-workshop), Time 2 (post-workshop) and Time 3 (3 months after the workshop). The evaluations comprise assessment of (a) Knowledge (for example risk factors for depression); (b) Attitudes, by means of quantitative measures: attitudes towards Guidelines Scale, AGS (Elovainio et al., 1999), and Physician Belief Scale (Ashworth et al., 1994); and (c) Clinical skills in which attendees will be asked to rate their clinical confidence in nominated scenarios. Additionally at Time 3, attendees will be asked to rate the extent to which they have incorporated recommendations from the guidelines into their clinical practice.


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Module 2: health professional summary card A brief summary card, designed for use by a wide range of health professionals such as general practitioners, nurses, occupational therapists, physiotherapists, and social workers, will include specific recommendations, including examples of the ways in which these can be translated into clinical practice. These cards, developed in consultation with a range of health professionals will be distributed to all general practitioners and to other professionals via their professional bodies. Evaluation of a random sample of recipients will be conducted as above. Module 3: consumer summary card A consumer version of the summary card will be produced, designed to de-stigmatize psychosocial issues, increase awareness of the effectiveness of psychosocial interventions, and to ‘legitimize’ the expression of psychosocial concerns by patients and their families. Women with breast cancer have taken strong advocacy roles in Australia and other countries, and been influential in promoting the importance of psychosocial care, in part driving clinical responses. It is anticipated that this model of changing health care could be adapted across other cancers. A randomized trial is currently being undertaken to evaluate the impact of receiving a consumer summary card on psychological distress and knowledge about psychosocial issues. Results will be used to refine the summary card prior to more widespread dissemination and evaluation. Module 4: rural and remote strategy Given the large number of cancer health care professionals working in rural and remote Australia, a specific strategy has been developed to accommodate their specific needs. A programme based on the Module 1 Interactive workshops will be devised, targeted towards more communitybased health professionals. The programme will have a strong clinical focus, and be broadcast to more than 550 sites across Australia. Audience members will be able to phone or fax questions to the broadcast centre where they can be addressed in real time by the discussion panel. The programme will be archived and hence accessible


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for future use. Evaluation will be similar to Module 1. In addition to these formal strategies, numerous organizations and service providers have initiated local strategies to implement the guidelines. These include strategies such as communication skills training for staff, educational updates and implementing models of supportive care services, such as the provision of specialist breast nurses. Another strategy in development is conducting several ‘demonstration projects’ in which an audit of clinical practice is conducted before and after specific training of staff in designated centres, including examination of patient perception of support and psychosocial care, and analysis of rates of referral to specialized psychosocial services. Cancer services also face challenges in evaluating the impact of implementation of the guidelines on patient outcomes and service provision. Implementation of the recommendations contained in these clinical practice guidelines also raises critical workforce issues which are beyond the scope of this paper. Although many of the recommendations can be implemented through the modification of existing services, including the provision of communication skills training and ensuring that patients’ information needs are met, a substantial proportion of patients with cancer and their families require specialized psychosocial services. Unfortunately, in many treatment settings, such services exist only in a rudimentary form and are poorly resourced. The further development of such services, along with the appropriate specialized training of oncology health professionals will only be achieved if there is acknowledgement by health administrators and government that such services are integral to cancer-care, not simply an ‘optional extra’, and this represents a long-term investment in quality health care.

ACKNOWLEDGEMENTS Development of the Guidelines was funded by the Australian Government Department of Health and Ageing.

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