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