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Survivorship care plansWhere are we now?Jennifer M. Jones, PhD, Princess Margaret Cancer Centre, University Health Network

AbstrAct

The number of people living with a history of cancer continues to increase. Few receive adequate care and support to manage late or persistent effects of cancer

or its treatment and monitor for recurrence. Survivorship care plans (SCPs) are promoted as a means of assuring and standardizing followup care. This article reviews the

case made for SCPs, the extent of their implementation and evidence to support their use. It examines barriers to their use and emphasizes the importance of the delivery, as well as the content, of SCPs.

Key words: Survivorship care plans, reentry transition, cancer followup, psychosocial support.

bAckgroundThere are now over 28 million individuals living with a per-sonal history of cancer worldwide (i.e. cancer survivors)1-3 including over 14 million in North America.4,5 With contin-ued projected increases in incidence of cancer and survival rates, this number is expected to double by 2050.3,6

While the majority of cancer survivors adjust well over the long-term,7-10 the period from primary cancer treatment to followup surveillance, termed the “reentry transition,” can present multiple challenges to restoring and maintain-ing health and overall wellbeing.11-17 At treatment comple-tion, cancer survivors must assume a greater role in their own care, including followup appointments for surveillance and tests, monitoring for disease recurrence, managing per-sistent and late physical and psychosocial effects, as well as reestablishing normal routines and social and work roles.18 Additionally, cancer survivours are often challenged to develop new health behaviours in order to reduce their risks of recurrence, secondary cancers, and comorbid diseases (e.g. osteoporosis and cardiovascular disease).19-24 Despite these challenges, few cancer survivors receive any coordi-nated comprehensive posttreatment survivorship care or self-management support and education.25,26 Therefore, it is not surprising that cancer survivors are often dissatisfied and frustrated with the care and support that they receive during this time, report that they are unsure what to expect once treatment is over, and express a desire for information about such issues as rehabilitation, diet and exercise, psy-chosocial supports, and how to deal with fears about cancer recurrence and long-term adverse effects.14,27

the emergence of survivorship cAre plAnsOver the last 2 decades, there has been a mounting call from a number of patient advocacy groups, expert consensus panels and governmental reports for improvement in the quality of posttreatment survivorship care to ensure conti-nuity of care and address the unmet needs of cancer survivors, particularly during the reentry transition period.13,28,29 In 2006, the Institute of Medicine (IOM) released a pivotal report entitled “From Cancer Patient to Cancer Survivor: Lost in Transition,”30 which identified cancer survivorship as a distinct phase of the cancer trajectory and provided 10 specific recommendations to improve the care of cancer survivors. One of the key recommendations, and the one that has since received the most attention, was the provision of a followup survivorship care plan (SCP).13,30 A SCP is a tool that provides cancer survivors with a summary of their diagnosis and treatment details and a comprehensive followup plan. In addition, the SCP should address the persistent physical and psychosocial effects of cancer, as well as moni-toring for and preventing late effects.17,30,31 It is recommended that all patients completing treatment should receive a SCP and that it should be delivered in a designated clinic visit to facilitate the transition from active treatment to the lifelong surveillance and followup phase of cancer care (see Table 1).

As a clinical tool, the SCP can be used to prepare patients for the transition to posttreatment care and has the potential to foster engagement of patients in the use of self-care strategies for managing persistent treatment effects and reduce the risk of late effects and comorbidities.32 The inclusion of standardized information in the SCP may also help to reduce variation in clinical practice, foster improvement in the quality of transition care processes, and facilitate exchange of information between cancer survivors and healthcare providers, including family physicians.33

In its 2006 report, the IOM concluded that SCPs “have strong face validity and can reasonably be assumed to improve care unless and until evidence accumulates to the contrary.”30 Since that time, the implementation of SCPs has been rec-ommended as part of quality of care improvements by organizations including the Canadian Association of Nurses

Jennifer m. Jones, phd, is Director of research with the Cancer Survivorship Program at Princess margaret Cancer Centre, University Health Network; Associate Director of eLLICSr; and a Scientist at the Ontario Cancer Institute. Dr. Jones is Associate Professor in the Department of Psychiatry, in the Faculty of medicine and at the Dalla Lana School of Public Health, University of Toronto.

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in Oncology (CANO/ACIO), Canadian Association of Psychosocial Oncology (CAPO), American Society of Clinical Oncology (ASCO) and the American College of Surgeons Commission on Cancer. Recent pan-Canadian guidelines on the followup care of cancer survivors recommended that “all individuals completing primary treatment for cancer receive a written treatment summary and followup care plan from a designated member of the care team that includes a standard set of core multidimensional elements tailored to the individual’s cancer and treatment experience.”34 In some cases, the delivery of SCPs is now required as part of accredi-tation in order to standardize current practice. By 2015, the American College of Surgeons (ACS) Commission on Cancer will require that ACS-accredited facilities, which treat approximately 70 percent of newly diagnosed cancer patients in the US, provide SCPs to all patients. Given this, there is an urgent need to also evaluate the feasibility of delivering SCPs and the care processes necessary for their effective delivery in the context of overloaded clinical oncology care delivery.35,36

To date, there has not been wide implementation of SCPs in the US or Canada, with a very small minority of cancer programs reporting SCP use.37,38 Numerous challenges to implementation have been identified, including time taken to complete and deliver the SCP, workforce and reimbursement issues, lack of guidelines to inform care plans, and lack of training for primary care providers.39-43 In a recent US survey of healthcare providers, the majority of oncologists reported that an SCP should take no more than 20 minutes (min) to deliver.42 In reality, Stricker and col-leagues (2011), who recently reviewed SCPs delivered within the Livestrong Network of Cancer Survivorship Centers in

the US, found that 1/3 of sites that provide SCPs spend more than 60 min just to create the SCP, and the majority reported an additional 15–60 min actually delivering the SCP to the patient.45 Creative solutions and innovative approaches are urgently required to improve efficiency and ensure sus-tainability of SCPs. These include the need for electronic solutions for care plan development that can extract and prepostulate SCPs using electronic patient records and existing tumour registries.33,44-49 Recently, in an effort to address barriers to SCP uptake, the American Society of Clinical Oncologists (ASCO) undertook a consensus-based multidisciplinary approach to identify the key components of SCPs — the “bare essentials.” This resulted in a less detailed SCP template compared to the IOM recommenda-tions, but one that may be more feasible to deliver. The key components identified for the treatment summary included 8 items (contact information, diagnosis, stage, treatments received, ongoing toxicity/side effects and, as needed, pre-disposing conditions/genetic testing) and the key compo-nents for the followup care plan included 9 items (contact information, ongoing therapy, schedule for visits/testing, cancer screening/surveillance tests, symptoms of recurrence, late/long-term effects and psychosocial concerns).50

WhAt is the evidence to support use of scps?Despite consensus on the need for SCPs as an essential element of survivorship care delivery and the considerable efforts to integrate SCPs into practice, there have been limited formal and rigorous evaluations of SCPs and their related care pro-cesses. To date, only a handful of studies have provided evaluation data of SCPs (see recent review by Mayer et al 2014).36 These studies have included both qualitative and quantitative approaches, and the results suggest that SCPs are well rated by patients and health professionals and are perceived as useful tools to facilitate coordination of post-treatment care.51-56 In a study by Shalom and colleagues, healthcare providers reported that SCPs increased their feelings of confidence to care for patients post treatment.57 Preliminary observational studies have also reported patient benefits, including increased knowledge and understanding of posttreatment care,58-60 enhanced feelings of well-being,61 improvements in confidence and greater feeling of engage-ment in care.56,62-65 Two recent cross-sectional studies suggest that SCPs may help to promote changes in health behaviour (e.g. cancer screening, exercise and diet).66,67

In addition, there have been 3 published randomized controlled trials (RCTs)to evaluate SCPs. Hershman et al randomized 141 early-stage breast cancer survivors to either usual care or usual care plus a 1-hour nurse and nutritionist intervention, during which they received a treatment sum-mary, surveillance recommendations and a discussion of late effects and lifestyle recommendations.68 Both groups also received standard print material. There were no differ-ences on cancer worry (primary outcome), satisfaction with care, survivorship concerns or depression, but there were significant improvements in health worry among women in the intervention group at 3 months post intervention. Grunfeld et al conducted a multicentre RCT of 408 breast

Table 1: Components of the IOM Survivorship Care Plan30

Upon discharge from cancer treatment, including treatment of recurrences, every patient should be given a record of all care received and important disease characteristics. This should include, at a minimum:

1. Diagnostic tests performed and results2. Tumour characteristics (e.g. site(s), stage and grade, hormone receptor status,

marker information)3. Dates of treatment initiation and completion4. Surgery, chemotherapy, radiotherapy, transplant, hormonal therapy and gene or

other therapies provided, including agents used, treatment regimen, total dosage, identifying number and title of clinical trials (if any), indicators of treatment respons and toxicities experienced during treatment

5. Psychosocial, nutritional and other supportive services provided6. Full contact information on treating institutions and key individual providers7. Identification of a key point of contact and coordinator of continuing care

Upon discharge from cancer treatment, every patient and his/her primary healthcare provider should receive a written followup care plan incorporating available evidence-based standards of care. This should include, at a minimum:

1. The likely course of recovery from treatment toxicities, as well as the need for ongoing health maintenance/adjuvant therapy

2. A description of recommended cancer screening and other periodic testing and examinations, and the schedule on which they should be performed (and who should provide them)

National Academies Press (2006). Reprinted with permission

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Parry and colleagues recently proposed a framework to help facilitate research regarding SCPs that integrates the context of care planning and identifies possible pathways through which SCPs may affect patient, provider and sys-tems outcomes.70 Moving forward, programs of research need to focus on identifying how best to deliver care to cancer survivors, including effective yet efficient models and processes of care to promote survivorship care planning. This research should include longitudinal and case-control designs that evaluate the impact of survivorship care planning on survivor, provider and system-level outcomes.

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21. Malcolm JB, Bagrodia A, Derweesh IH, Mehrazin R, Diblasio CJ, Wake RW, et al. Comparison of rates and risk factors for developing chronic renal insufficiency, proteinuria and metabolic acidosis after radical or partial nephrectomy. BJU International 2009;104(4):476-81. Epub 2009 Feb 10.

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cancer survivors who were a median of 35 months post treatment.69 Those randomized to the intervention group received an SCP, which included a summary table of fol-lowup guidelines and a resource kit of available supportive care resources. The SCP was delivered in the context of a 30-minute session with a nurse. The study results did not find that the intervention improved stress reaction (primary outcome), quality of life, patient satisfaction or continuity of care. Finally, the most recent RCT was conducted by Brothers et al and included 121 gynecologic cancer survi-vors who were randomized to an individualized SCP delivered by their physician. The authors found no differ-ence between the groups regarding satisfaction with or perceptions of care.53

The limitations of the research to date have been high-lighted and have stimulated thoughtful discussion regarding the ideal timing of SCP delivery, choice of patient popula-tion, and the most appropriate metrics to evaluate the efficacy of SCPs.31,32,39,45,70-74 Future research must start to address the methodological challenges of conducting research on SCPs.

the process of cAre plAnningThe IOM has recommended that the SCP be developed and delivered to patients at the end of treatment and that these should be reviewed with the patient during a dedicated appointment. Despite this, focus has primarily been on the SCP document in isolation, and there are few details in terms of the care models and therapeutic approaches used in its delivery. The focus on the SCP document in isolation was recently described by Parry et al70 as “losing sight of the proverbial forest for the trees.” In the same article, the authors suggest that many of the failings of research on survivorship care planning to date are a result of “conceptual divorcing” of the SCP document from the process of care planning. Simply handing an SCP to a patient at the end of treatment cannot alone be expected to result in improved followup care and behaviour change.75-78 Instead, SCPs should be seen as a platform that can facilitate discussion and reinforce key messages about health information and lifestyle, and be used as an adjunct to personalized assessment and care planning by skilled practitioners.79,80 In this regard, patient-centred approaches that focus on promoting patient engagement and self-management have been suggested as essential components to survivorship care planning.18

summAry And future directions SCPs are now considered by many to be one of the most essential elements of survivorship care, resulting in consid-erable efforts to implement and even mandate SCPs into practice. These efforts have been driven primarily by the “face validity” of SCPs rather than definitive evidence of their actual efficacy and impact. Consequently, there are urgent calls for rigorous externally and internally valid studies to evaluate the effect of tailored comprehensive SCPs and their related care processes on relevant outcomes and to determine if the outcomes of survivorship care planning warrant the resources required for their implementation.

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