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Our goal was to develop evidence-based recommendations for the organization and structure of cancer survivorship services, and best-care practices to optimize the health and well-being of post–primary treatment survivors. This review sought to determine the optimal organization and care delivery structure for cancer survivorship services, and the specific clinical practices and interventions that would improve or maximize the psychosocial health and overall well-being of adult cancer survivors.
We conducted a systematic search of the Inventory of Cancer Guidelines at the Canadian Partnership Against Cancer, the U.S. National Guideline Clearinghouse, the Canadian Medical Association InfoBase, medline (ovid: 1999 through November 2009), embase (ovid: 1999 through November 2009), Psychinfo (ovid: 1999 through November 2009), the Cochrane Library (ovid; Issue 1, 2009), and cinahl (ebsco: 1999 through December 2009). Reference lists of related papers and recent review articles were scanned for additional citations.
Articles were selected for inclusion as evidence in the systematic review if they reported on organizational system components for survivors of cancer, or on psychosocial or supportive care interventions HOWELL et al. designed for survivors of cancer. Articles were excluded from the systematic review if they focused only on pediatric cancer survivor populations or on populations that transitioned from pediatric cancer to adult services; if they addressed only pharmacologic interventions or diagnostic testing and follow-up of cancer survivors; if they were systematic reviews with inadequately described methods; if they were qualitative or descriptive studies; and if they were opinion papers, letters, or editorials.
Evidence was selected and reviewed by three members of the Cancer Journey Survivorship Expert Panel (SM, TC, TKO). The resulting summary of the evidence was guided further and reviewed by the members of Cancer Journey Survivorship Expert Panel. Fourteen practice guidelines, eight systematic reviews, and sixty-thee randomized controlled trials form the evidence base for this guidance document. These publications demonstrate that survivors benefit from coordinated post-treatment care, including interventions to address specific psychosocial, supportive care, and rehabilitative concerns.
Ongoing high-quality research is essential to optimize services for cancer survivors. Interventions that promote healthy lifestyle behaviours or that address psychosocial concerns and distress appear to improve physical functioning, psychosocial well-being, and quality of life for survivors.
Despite the mortality associated with cancer, survivors are a growing population in Canada. According to 2009 statistics, more than 260,000 people were expected to be alive within 10 years of a primary diagnosis of cancer, a number that equates to more than twice the number of people surviving cancer in the early 1990s 1. Several definitions of cancer survivorship exist, but the U.S. National Cancer Institute considers an individual a survivor from the time of a diagnosis through the balance of his or her life. Family members, friends, and caregivers are also affected by the survivorship experience and are therefore included in that definition 2.
Along the cancer continuum, much attention is paid to the diagnostic and treatment phases of care; however, the post–primary treatment phase is a distinct part of the cancer trajectory that needs to be specifically addressed because it has been largely neglected in advocacy, education, clinical practice, and research 3. Cancer and cancer treatment have a substantial impact on long-term health and quality of life, leading to questions about the most appropriate configuration of health care services for survivors. People who survive their cancer are at risk of late or protracted effects that depend on the type and stage of cancer and on all the various therapies used to treat the cancer or to reduce side effects. As a result of their experience with cancer and its treatment, post-treatment survivors have supportive care needs in the physical, informational, emotional, psychological, social, spiritual, and practical domains, just as they do during active treatment 4.
The purpose of the present paper is to describe the development of a pan-Canadian guideline with evidence-based recommendations for the organization and structure of survivorship services and for best-care practices to optimize health and well-being. We also report on the results of a national survey that obtained external feedback on the appropriateness and relevance of these recommendations to cancer care organizations. To our knowledge, this is the only national or international evidence-based guideline regarding the structure and composition of survivorship care services.
These questions were used to guide the systematic review of the literature:
Outcomes of interest included survival, recurrence, survivor satisfaction, psychosocial and supportive care needs, and health-related quality of life.
Evidence was included for review if it addressed adult cancer survivors in the periods of survivorship described as “extended survival” (recovery from initial treatment, watchful waiting, surveillance with medical testing, fear of recurrence, and uncertainty) and “permanent survival” (coping with late and long-term physical, emotional, and other effects; adjusting to the “new normal” life beyond cancer). Evidence pertaining to adult cancer survivors receiving ongoing hormonal therapies in the post-treatment phase of survivorship and to those with advanced disease was included. Although we recognize that cancer survivorship begins at diagnosis (that is, during acute survival), that specific phase of survivorship was considered outside the scope of the present review.
This guideline document is intended to inform Canadian health authorities, key administrative and policy decision-makers, advocacy groups, and health and supportive care practitioners about the optimal structure for survivorship services and about clinical practices for adult cancer survivors in the post–primary treatment survivorship period. It is also intended for use by survivors and their caregivers to assist in making informed decisions about survivorship services and health practices.
This guideline was developed as part of on-going co-operation between the Canadian Partnership Against Cancer and the Canadian Association of Psychosocial Oncology. The Cancer Journey Survivorship Expert Panel, whose members have expertise in cancer survivorship, conducted a systematic review of the literature, current to November 2009. A draft version of the guideline was distributed to content experts and key stakeholders across Canada, who had the opportunity to provide feedback about the collection and interpretation of the evidence, and the development and content of the recommendations. The final guideline document was approved through a formal and unanimous consensus vote of the Cancer Journey Survivorship Expert Panel. The literature will be periodically reviewed, and the guideline will be updated as new or compelling evidence is identified.
The membership of the Cancer Journey Survivorship Expert Panel included psychologists, nurses, spiritual care professionals, researchers, social workers, family physicians, health services researchers, cancer survivors, and clinical practice guideline developers. To ensure that the views and preferences of the target population were addressed, the draft document was circulated to cancer survivors for external feedback. As part of that process, several members of the Cancer Journey Survivorship Expert Panel and 7 members of the external review committee disclosed that they were also cancer survivors.
The systematic search of the literature included the Inventory of Cancer Guidelines maintained by the Canadian Partnership Against Cancer, the U.S. National Guideline Clearinghouse, the Canadian Medical Association InfoBase, medline (ovid: 1999 through November 2009), embase (ovid: 1999 through November 2009), Psychinfo (ovid: 1999 through November 2009), the Cochrane Library (ovid; Issue 1, 2009), and cinahl (ebsco: 1999 through December 2009). Reference lists of related papers and recent review articles were scanned for additional citations.
Evidence was selected and reviewed by 4 members of the Cancer Journey Survivorship Expert Panel (DH, SM, TC, TKO). The resulting summary of the evidence was guided further and reviewed by the members of Cancer Journey Survivorship Expert Panel.
Articles were selected for inclusion as evidence in the systematic review if they reported on organizational system components for survivors of cancer or on psychosocial or supportive care interventions designed for survivors of cancer. Studies also had to
Articles were excluded from the systematic review if they
The literature search identified 3275 relevant articles. Of those articles, fourteen practice guidelines 5–19, eight systematic reviews 20–27, and sixty-three randomized trials 28–89 were considered eligible for inclusion.
Regarding the organization and care-delivery structure of survivorship services, the reviewed literature provided recommendations for models of care, type of provider, and structural approaches such as survivorship care plans. In terms of psychosocial and supportive care interventions for cancer survivors, the literature predominantly included recommendations for physical outcomes; emotional, psychological, informational, social, spiritual, and practical outcomes were occasionally addressed. The agree ii 90 tool was used to critically appraise the quality of the clinical practice guidelines, which were assessed to be poor to moderate in overall reporting quality.
The psychosocial and supportive care interventions that were reviewed included cognitive behavioural and psychoeducational interventions and lifestyle management interventions such as exercise and nutrition programs. Using the Scottish Intercollegiate Guidelines Network critical appraisal tool 91, the systematic reviews were rated as being of poor to moderate overall methodologic quality. Limitations of the systematic reviews included substantial heterogeneity in mode, frequency, intensity, and duration of the interventions. Breast cancer survivors were the focus of most of the studies reviewed. Low sample sizes and weak methodologic quality characterized many of the studies.
Of the sixty-three randomized trials, nine reported interventions related to follow-up care, twenty-one reported on psychoeducational or cognitive behavioural interventions, and thirty-three reported interventions related to lifestyle management. Using the Scottish Intercollegiate Guidelines Network methodology 91, the quality of the sixty-three trials ranged from non-assessable to poor or modest quality. Because of the nature of the interventions, most trials did not blind participants or an assessor, which is a common challenge within psychosocial research. The reporting of procedures and outcomes was deemed inadequate, and most trials had insufficient statistical power to detect significant differences between treatment groups for the primary outcomes of interest. Because most of the trials were conducted with breast cancer survivors, generalizability of the results may be limited. Furthermore, few studies reported rates of adherence rates to interventions, particularly for unsupervised exercise programs.
As seen in Tables I and andII,II, assessment using the grade (Grading of Recommendations Assessment, Development and Evaluation) approach for summarizing and assessing the quality of the body of evidence 92 found that the evidence informing the outcomes of interest was of low quality, that the results were generally inconsistent, and that the data were too heterogeneous to pool across studies. High-quality evidence that directly answered the questions of interest for all cancer survivor populations was scarce, and an informal assessment of precision indicated that wide confidence intervals would accompany any estimates of effect if data were to be pooled across studies by outcome of interest.
The final guideline and recommendations were reviewed by 36 health care professionals from across Canada, purposively selected for their expertise in psychosocial and supportive care of cancer survivors. Respondents were asked to complete a survey on the relevance and quality of the guideline and were invited to comment on the draft. The Cancer Journey Survivorship Expert Panel reviewed the results of the external review, addressed each comment, and modified the guideline accordingly. Table III summarizes the findings of the external review.
As seen in Table III, most respondents agreed that the guideline was both needed and appropriate; 83% indicated they would likely or very likely make use of the recommendations to inform the development of survivorship services in their own organization, practice, or community program.
A systematic search of the literature yielded clinical practice guidelines, systematic reviews, and randomized controlled trials that help to inform the organization of cancer survivorship services and clinical practices to optimize the health and well-being of adult cancer survivors. Although generally weak, the evidence identifies important themes in the cancer survivorship journey. Further, the evidence is consistent if viewed not by specific intervention, but rather by thematic approach, such as overall improvement in physical or psychosocial outcomes.
Evidence related to models of care—including the site of care, type of provider, and supportive services—is modest. Even so, the evidence supports the importance of interdisciplinary survivorship care, in which members of the cancer treatment team are knowledgeable about issues facing cancer survivors and skilled at detecting and responding to distress in individuals. The evidence also supports survivorship services that meet a range of survivor needs, including informational, psychological, emotional, spiritual, physical, and social needs. Satisfaction was generally higher and other outcomes, such as distress, were generally improved when those needs were met. Several randomized trials investigated the value of follow-up care according to provider type (primary care physicians, nurses, oncology specialists) or trigger-context (routine appointments or survivor-initiated care). Overall, satisfaction with care was greater with alternative follow-up approaches than with standard approaches, but the evidence is not robust, and no compelling differences were observed in other outcomes to adequately inform the topic of a preferred model of care.
In terms of outcomes related to survival or disease recurrence, it appears that dietary behavioural modification interventions were effective at improving intake of fruits, vegetables, and fibre, and at reducing intake of dietary fat, which corresponds with improved body weight and body composition outcomes. If the goal is to improve survival, the results of such interventions are inconclusive. Although two large trials in patients with breast cancer helped to inform the discussion, results were inconsistent. One trial detected a survival difference; the other did not. Study quality was poor, and results are generalizable only for patients with breast cancer.
Not surprisingly, interventions that promoted exercise, diet, or both, with or without counselling, were generally effective at improving outcomes in overall physical health. Most interventions were effective in improving health, but the multi-component interventions were consistently effective at improving short-term physical health. Whether such change was sustained over time is unknown; however, it is reasonable to offer exercise, dietary, or smoking cessation programs to survivors on the basis of improved outcomes. Programs should be tailored to meet the individual survivor’s goals, ability level, and available community resources. The appropriateness and safety of any program should be considered in consultation with the survivor and their interdisciplinary health care team.
Interventions designed to reduce fatigue through psychosocial or exercise interventions were generally successful, but the results pertain primarily to breast cancer survivors. Effect sizes were small to moderate, and long-term data on the sustainability of the improved outcomes were inconclusive. Two small randomized controlled trials indicated that breast cancer survivors should have access to multi-component cognitive behavioural therapy and lifestyle management programs to help with postmenopausal vasomotor symptoms.
Evidence is limited, but it is reasonable to conclude that, compared with standard care, sleep-oriented interventions based on cognitive behavioural therapy are more effective in improving sleep outcomes. The effects of such interventions may be sustainable for at least 1 year post treatment.
Sexual function was assessed in one practice guideline and two randomized trials. With improvements in function detected in the two trials, it is reasonable to conclude that survivors should have access to psychoeducational interventions addressing changes in sexual health during and after treatment and should be offered access to programs that include both the cancer survivor and the survivor’s partner—that is, couples therapy.
Psychosocial functioning is an amorphous outcome and was generally defined as any improvement in psychological, social, or spiritual health. A, series of psychoeducational or cognitive behavioural therapy interventions were used to address this important outcome. Most interventions resulted in meaningful improvements in some aspect of psychosocial functioning, thereby improving aspects of quality of life, but the trials were not designed to detect significant improvements in overall distress. However, based on these data, it seems reasonable to reduce psychosocial distress by recommending that survivors with psychosocial concerns or distress be offered referral to psychosocial services or individualized or group-based cognitive behavioural or psychoeducational programs provided by trained professionals.
Quality of life is a multi-dimensional concept that includes physical, social, emotional, and spiritual well-being. As an outcome, quality of life is hard to define despite the use of numerous surrogate measures. Regardless of the measures used, most interventions improved quality of life more than standard care did. Any improvements in a cancer survivor’s journey might result in improved quality of life, and because the evidence supports that association, a survivorship care plan should consider interventions that both indirectly and directly improve quality of life.
Overall, the evidence supports a benefit for cancer survivors from ongoing post-treatment survivorship care (a variety of services and interventions designed to improve survivor outcomes). Survivors should have access to coordinated, interdisciplinary, multi-component psychosocial and supportive care services during the transition from active treatment to extended survival. Ongoing high-quality research is needed to optimize services for cancer survivors, but interventions that promote healthy lifestyle behaviours (daily physical activity, balanced nutrition, and access to smoking cessation programs, among others) and those that address psychosocial concerns or distress appear to improve physical functioning, well-being, and quality of life for survivors. Furthermore, the research reviewed for this guideline suggests that the provision of psychosocial and supportive care services need not be limited to specialist cancer care settings. Indeed, individually or in combination, primary care or nurse-led follow-up models may be viable options for delivering psychosocial and supportive care services, particularly during extended survival.
The provision of optimal survivorship services depends on a rigorous evaluation of care delivery structures and interventions developed to meet the specific needs of survivors in the post-treatment phase. The evidence base will be strengthened by study designs that strive to overcome the limitations of existing research: for example, ensuring adequate statistical power, and blinding participants where possible. To facilitate the application of empirical findings to clinical settings, future research should consider the respective roles of system indicators (for example, cost-efficiency, continuity of care) and individual outcomes (for example, specific late effects, distress, social costs) in determining the effectiveness of various approaches to care delivery and the specific psychosocial and supportive care interventions.
This guideline document does not address the underserved cancer survivor populations (that is, those having literacy issues or living in poor socio-economic conditions). Further research is needed to understand the specific needs and support requirements of vulnerable populations.
It is also recognized that cancer centres across Canada vary substantially with respect to community resources, capacity for implementation, education, and knowledgeable professionals. Those variations could make it difficult to implement standardized cancer survivorship services. For effective implementation, organizations will need to tailor the recommendations based on local organizational structures and abilities to deliver care.
Some resources and greater research must focus on approaches to implementation: Which approach is most effective in facilitating adoption and uptake of the guideline recommendations? The knowledge translation approaches and strategies recommended by the Knowledge Translation Institute of the Canadian Institutes of Health Research will be helpful to organizations developing a systematic approach to health care and change in practice (http://www.cihr-irsc.gc.ca/e/39152.html). Recommendations and tactics for implementation are offered by the Cancer Journey Survivorship Expert Panel (Appendix a).
The Cancer Journey Survivorship Expert Panel is editorially independent of any funding sources. The views and interests of the funding sources have not influenced the recommendations in the guideline document.
The Survivorship Expert Panel thanks Ms. Margaret Tompson and Ms. Sandra Costa for their assistance in the preparation of this manuscript. Special thanks also go to the 36 health care professionals from across Canada who provided feedback on this guideline document.
The recommendations that follow are based on the consensus of the Cancer Journey Survivorship Expert Panel, informed by a systematic review of the evidence current to December 2009. The body of evidence includes clinical practice guidelines, systematic reviews, and randomized controlled trials. Each recommendation was developed with consideration for the balance between the expected health benefits and the potential harms, side effects, or risks associated with the guidance offered. Tactics for guideline implementation across various health care jurisdictions or health models are offered and can be used in auditing or monitoring survivorship services. Final and formal approval of the document was obtained through an online vote by the members of the Cancer Journey Survivorship Expert Panel. Where recommendations were taken directly or adapted from any of the identified practice guidelines, the source document is listed after the recommendation. While there is a great volume of data on the topic, recommendations should be considered consensus-based and informed by the evidence unless otherwise stated.
Please visit http://www.cancerview.ca or http://www.capo.ca for more extensive information on the systematic review results, the external review process, and the methods used to inform the guideline document. The Canadian Association of Psychosocial Oncology has assumed stewardship of this guideline, and the recommendations are published here with their permission.
It is recommended that survivorship services be recognized as a distinct component and standard of cancer care, with access by survivors to services to meet a broad range of their physical, psychosocial, supportive, informational, and rehabilitative needs. [Adapted from U.S. Institute of Medicine (iom) consensus recommendation 2]
It is recommended that individuals completing cancer treatment and their families receive individualized information and support in consultation with a designated and skilled member of the health care team to prepare them for the life-long monitoring and follow-up care required post cancer treatment and to minimize distress in the transition from active treatment to the follow-up phase of the cancer journey.
It is recommended that all individuals completing primary treatment for cancer receive a written treatment summary and follow-up care plan (“survivorship care plan”) from a designated member of the care team. The plan should include a standard set of core multidimensional elements tailored to the individual’s cancer and treatment experience. (Adapted from iom consensus recommendation 2)
It is recommended that one or more health care providers be designated to be responsible for providing survivorship follow-up services, with integration of primary care physicians in monitoring for late and long-term treatment consequences, coordinated access to inter-disciplinary specialists as required, and an emphasis on actively engaging and empowering survivors.
It is recommended that valid tools be used to routinely screen survivors for distress across a broad range of late and long-term treatment effects: persistent symptoms and functional problems, symptoms of mood disorders (anxiety and depression), and other common problems such as cognitive changes or alterations in sexual health. Screening should be followed by focused assessment and interventions based on recommendations found in evidence-based clinical practice guidelines. (Adapted from iom consensus recommendation 3 and the Psychosocial Health Care Needs Assessment Guideline for Adults, 2009)
It is recommended that approaches which support effective self-management be used. Designated providers of survivorship follow-up care should focus on enabling and empowering individuals and their families by giving them the skills and knowledge they need to be active participants in optimizing their own health and well-being.
It is recommended that all clinical staff receive education to increase awareness of the needs of cancer survivors. Specific education programs should be targeted to designated follow-up care providers to ensure effective monitoring for disease recurrence and prevention and management of late and long-term effects of cancer treatment, and to encourage specific strategies that empower survivors to be actively engaged in self-management and to adopt healthy lifestyle behaviours.
It is recommended that cancer care organizations, advocacy groups, and governments, as part of cancer control initiatives, work in partnership to increase awareness in the broader community (members of the public, decision-makers, policymakers, and employers) of the physical, emotional, spiritual, social, return-to-work, and rehabilitative needs of survivors post cancer treatment, and take into account variations depending on cancer type, treatment, individual, and support systems (economic support, family, rehabilitation).
It is recommended that cancer care providers, provincial and federal health research organizations, and advocacy groups support the development of new research initiatives focused on post-treatment follow-up care and recovery. In particular, research is needed to examine the late and long-term effects of cancer and its treatments, the effectiveness of survivorship care plans and transition care, interventions to improve quality of life, and alternative models of care for cancer survivors.
It is recommended that organizations use, and report on, performance measures and indicators that capture self-reported physical or psychosocial domains to monitor the quality of survivorship services, and demonstrate improvement for a comprehensive range of survivor outcomes. Quality improvement practices and programs should be accelerated based on those data.
It is recommended that health policy and legislation (employment law, insurance, human rights) be enacted to meet the diverse needs of cancer survivors and to allow for full survivor access to and participation in employment, education, and health and community services. (Adapted from iom Recommendation 8)
It is recommended that survivors have access to self-management- focused education and support to facilitate tailored adoption of healthy lifestyle behaviours (inclusive of daily physical activity, balanced nutrition, and smoking cessation programs) designed to improve health-related quality-of-life and physiologic outcomes and to reduce distress and risk of recurrence.
It is recommended that psychosocial and supportive care programs and interventions be designed based on health behaviour– change theories that are known to be influential and necessary for sustaining the adoption of healthy lifestyle behaviours.
It is recommended that survivors at risk of, or with identified and significant, psychosocial concerns or distress be offered referral to psychosocial services, individualized or group-based cognitive behavioural or psychoeducational programs provided by trained professionals.
It is recommended that protocols for routine follow-up include monitoring for and managing physiologic and psychosocial symptoms, including pain and fatigue and late and long-term effects, including pulmonary or cardiac effects, osteoporosis, and other endocrine or body-system abnormalities. A coordinated shared-care approach should be used, including referrals to appropriate interdisciplinary team members as appropriate.
It is recommended that survivors receive specific psychoeducational- based care regarding changes in sexual health and function. They should have access to programs that include couples therapy for both the cancer survivor and the survivor’s partner and sexual rehabilitation programs to promote healthy post-treatment sexual health and maximal function.
It is recommended that survivors be screened for cancer-related fatigue and have access to exercise programs combined with psychoeducational interventions and multi-component cognitive behavioural therapy to manage post-treatment fatigue.
It is recommended that all female cancer survivors have access to multi-component cognitive behavioural therapy and lifestyle management programs to effectively manage vasomotor symptoms. This type of management is also important for other cancer survivors, such as those with prostate cancer, in whom hormonal deprivation therapies may lead to significant physical and emotional effects.
It is recommended that survivors have access to multi-component cognitive behavioural therapy programs to manage disruptions in sleep–wake patterns.
Care has been taken in the preparation of the information contained in this practice guideline. Nonetheless, any person seeking to apply or consult the practice guideline is expected to use independent clinical judgment and skills in the context of individual clinical circumstances or to seek out the supervision of a qualified clinician. The Cancer Journey Advisory Group of the Canadian Partnership Against Cancer and their guideline copyright partner, the Canadian Psychosocial Oncology Association, make no representation or warranties of any kind whatsoever regarding guideline content or use or application, and disclaims any responsibility for guideline application or use in any way.
aIn this work, “psychosocial” encompasses the physical, psychological, social, and spiritual health domains.
9. CONFLICT OF INTEREST DISCLOSURES
Members of the Cancer Journey Survivorship Expert Panel were asked to declare any conflicts of interest that may potentially have influenced or biased the recommendations presented in the guideline document. Conflict of interest forms were completed by each Panel member and forms were centrally collected and filed. None of the members of the Cancer Journey Survivorship Expert Panel declared any real or perceived conflicts of interest associated with the guideline document.