Long-Term Survivorship Care After Cancer Treatment Proceedings of a Workshop (2018) / Chapter Skim
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To examine progress in cancer survivorship care since the From Cancer Patient to Cancer Survivor report, the National Cancer Policy Forum of the National Academies of Sciences, Engineering, and Medicine held a workshop, Long-Term Survivorship Care After Cancer Treatment, on July 24 and July 25, 2017, in Washington, DC. Workshop presenta 1 The planning committee's role was limited to planning the workshop, and the Proceed ings of a Workshop was prepared by the workshop rapporteurs as a factual summary of what occurred at the workshop.
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The speakers' presentations (as PDF and video files) have been archived online.2 To summarize suggestions made by many participants throughout the workshop to accelerate progress in cancer survivorship, Patricia Ganz, director of the Center for Cancer Prevention and Control Research at the University of California, Los Angeles, Jonsson Comprehensive Cancer Center, presented several goals for the next decade: • Providing survivorship care that is accessible, affordable, and equitable; • Improving ways to reduce suffering and mortality among survivors, and promoting return to life, work, and school; • Testing models of care delivery and approaches to risk stratification that take into account the whole person -- all of one's health conditions and social conditions, not just one's cancer; • Enhancing the education of survivors and all clinicians; • Focusing on the needs of caregivers; • Collecting better data on diverse populations with cancer in research studies; • Integrating evidence-based psychosocial services into standard care; • Eliminating services when evidence indicates there is no benefit (e.g., certain surveillance tests)
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• Expand the cancer survivorship care team to include oncol ogists, primary care clinicians, advanced practice nurses, social orkers, nurse and lay navigators, and specialists in w cancer rehabilitation, psychosocial care, and palliative care. (Alfano, Franco, Kennedy Sheldon, Mayer)
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Expanding Education and Training Opportunities • Augment cancer survivorship care content in education and training for all members of the cancer care team, including pri mary care clinicians, nurses, social workers, psychologists, and rehabilitation specialists. (Burton, Ganz, Nekhlyudov)
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• Maintain the legal protections provided to cancer survivors by the Americans with Disabilities Act, the Family and Medical Leave Act, the Genetic Information Non-Discrimination Act, the Indi viduals with Disabilities Education Act, and various state laws. (Bradley, Hoffman)
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i OVERVIEW OF CANCER SURVIVORSHIP CARE Ganz described the cancer survivorship care continuum, starting with risk assessment and intervention at the time of diagnosis (see Figure 1)
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She acknowledged that progress has been made since the report, but emphasized that survivorship remains a neglected phase of the cancer care trajectory. Ganz observed that the needs of many cancer survivors are not being met and emphasized that opportunities to intervene in the lives of cancer survivors are often missed.
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Cancer therapies tend to be very costly and services are often poorly coordinated during and following treatment. Furthermore, cancer treatment usually occurs in isolation from primary health care delivery.
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. Arora shared his personal cancer experiences and offered his vision for the future of cancer survivorship care.
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. Arora summarized findings from two population-based studies on cancer survivorship that he worked on while at the NCI that quantified the degree of unmet needs in the cancer survivor population (see Table 1)
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Arora said cancer patients and survivors often seek a "quarterback" who can help coordinate care, noting that care coordination is more complex for older cancer survivors. Research shows that at least one in four cancer survivors ages 65 or older has five or more comorbid conditions (IOM and NRC, 2006)
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and concluded, "On the road to delivering high-quality care, always walk in the shoes of the patient." BOX 3 A Patient's Voice: Challenges in Care Coordination Prior to his cancer diagnosis, Neeraj Arora, associate irector d in the Healthcare Delivery and Disparities Research program at the Patient-Centered Outcomes Research Institute, and former program director at the National Cancer Institute, had no health problems and his only interactions with the health care system were visits to his primary care clinician for a physical or for minor medi cal complaints. At that time he believed his primary care clinician served as his medical home, but following his diagnosis of aggres sive non-Hodgkin's lymphoma in 1994, his oncologist became his medical home.
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. Awareness of the Needs of Cancer Survivors Since 2006, Nekhlyudov said there has been an increase in programs dedicated to cancer survivorship.
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Ganz discussed survivorship care plans in the context of the Chronic Care Model, an evidence-based, conceptual framework that "describes changes to the health care system that help practices -- particularly those in
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Recommendation 9: Federal and state policy makers should act to ensure that all cancer survivors have access to adequate and affordable health insurance. Insurers and payors of health care should recognize survivorship care as an essential part of cancer care and design benefits, payment policies, and reimbursement mechanisms to facilitate coverage for evidence-based aspects of care.
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Clinical Practice Guidelines for Cancer Survivorship Care Ganz said that in 2006, there were few clinical practice guidelines on follow-up care for survivors, and health care professionals generally lacked survivorship education and training. Ganz observed that while progress has been made in this regard, professional education and training in survivorship 4 See https://www.cancer.org/treatment/survivorship-during-and-after-treatment/ survivorship-care-plans.html (accessed February 9, 2018)
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Nekhlyudov said that, increasingly, guidelines have become evidence based, and efforts are under way to harmonize international guidelines. Nonetheless, she said many diseasebased guidelines do not fully recognize and highlight the complex needs of cancer survivors.
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has made advances in measuring quality of care, for example, but she noted that the metrics are mainly focused on cancer treatment and not on survivorship care. Ganz said the essential components of survivorship care identified in the 2006 report -- prevention, surveillance, intervention, and coordination -- are lacking in many care settings, and that systems of care remain inadequate for cancer survivors in terms of the ability to intervene early to prevent the many sequelae of treatment, both medical and psychosocial.
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• Professional educational programs for cancer care teams should train clinicians in communication. • The cancer care team should communicate and personalize this information for their patients and collaborate with their patients to develop care plans.
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Cancer Institute found mention of cancer survivorship across most of the cancer control plan objectives (Underwood et al., 2015) , but to date there has been no systematic review of the outcomes reported, Nekhlyudov said.
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on a free online cancer survivorship e-learning series for primary care clinicians.10 Unfortunately, the target audience for the series has not taken full advantage of this valuable resource, she said. ASCO also has resources for survivorship care, including toolkits, available through an online survivorship compendium,11 and has released a core curriculum for cancer survivorship education, a resource that can be taken to local communities for dissemination (Shapiro et al., 2016)
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She mentioned one study that attempted to assess the impact of the ACA on cancer survivorship; the investigators concluded that while there is some suggestion of benefit, there are currently few data available with which to fully evaluate the ACA's effect (Leopold et al., 2017)
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Components of Survivorship Care Delivery Deborah Mayer, a 10-year cancer survivor and director of cancer survivorship at the University of North Carolina Lineberger Comprehensive Cancer Center, explained that in 2011, the LIVESTRONG Foundation held a consensus meeting to determine essential elements of survivorship care delivery, which were organized into three tiers of care (consensus elements, high-need elements, and strive elements, respectively) (see Table 2)
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She said some patients report that information in the EHR does not get to the primary care clinician, who then depends on the patient to relay information about his or her cancer care. Mayer said that primary care clinicians do believe they have
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Late- and Long-Term Health Risks Kevin Oeffinger, director of the Duke Center for Onco-Primary Care and the Duke Cancer Institute Cancer Supportive Care and Survivorship Center, summarized the health risks that cancer survivors face following treatment and discussed the research on interventions for improving the physical well-being of cancer survivors. Oeffinger provided an overview of the many potential late effects of cancer treatment (see Table 3)
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; and • Aging. TABLE 3 Potential Late Effects After Cancer, by System and Exposure System Exposures Potential Late Effects Cardiac Radiation therapy Myocardial infarction Anthracyclines Congestive heart failure Anti-HER2 therapy Valvular disease Arrhythmias Pulmonary Radiation therapy Restrictive lung disease BCNU/CCNU Exercise intolerance Bleomycin Renal/ Radiation therapy Atrophy or hypertrophy urological Platinum agents Renal insufficiency or failure Ifosfamide/cyclophosphamide Endocrine Radiation therapy Pituitary, thyroid, adrenal disease Alkylating agents Ovarian or testicular failure Infertility Central Radiation therapy Cognitive dysfunction nervous Intrathecal chemotherapy system Other chemotherapy Psychological Cancer Posttraumatic stress Employment/educational problems Insurance discrimination Adaptation/problem solving Second Radiation therapy Solid tumors malignancies Alkylating agents Leukemia Epipodophyllotoxins Lymphoma NOTE: BCNU/CCNU = carmustine/lomustine; HER2 = human epidermal growth receptor 2.
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. To further illustrate the physical issues affecting cancer survivors, Oeffinger summarized research findings related to subsequent primary cancers and cardiovascular disease, which are the greatest contributors to morbidity and premature mortality apart from the primary cancer, as well as accelerated aging.
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. He said a modeling study indicated that among women with a primary breast or colorectal cancer, the 10-year cumulative risk of a second primary cancer increases with age and is higher than that expected in the general population (Moitry et al., 2017)
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can help to mitigate cardiovascular late effects. He said the decreased radiation exposure from newer techniques has led to a decline in the risk of second breast cancers and pulmonary problems in breast cancer patients, but that even with the use of more targeted fields, Hodgkin's lymphoma patients face cardiovascular risks because many have mediastinal lymph node involvement near the proximal coronary arteries.
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. Hypertension, either before, during, or after cancer therapy, is the single most important predictor of heart failure in breast cancer survivors treated with anthracyclines and trastuzumab, he noted (Chen et al., 2012; Jawa et al., 2016)
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. Research on Interventions for Improved Physical Well-Being Oeffinger discussed research on strategies for mitigating late- and long-term physical health risks in adult cancer survivors.
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Sleep, Fatigue, and Cognitive Functioning Paul Jacobsen, associate director of the NCI Division of Cancer Control and Population Science's Healthcare Delivery Research Program, said that addressing fatigue, sleep, and cognitive functioning is essential to the comprehensive management of symptoms that cancer survivors experience. He said studies show that the burden of symptoms for people in the posttreatment period is substantial: In one survey of more than 2,800 patients with breast, colorectal, prostate, or lung cancer, approximately 33 percent of patients who had completed primary cancer therapy reported three or more moderate to severe symptoms (Cleeland et al., 2013)
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For example, among women with early-stage breast cancer, those exposed to chemotherapy versus radiotherapy as their initial cancer treatment are more likely to have persistent posttreatment fatigue (Donovan et al., 2004)
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. Jacobsen said that risk factors for posttreatment sleep problems include the type of cancer treatment, arousability (individual differences in responsiveness to environmental stimuli, e.g., noise)
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. Jacobsen said that cognitive behavioral therapy is the most widely tudied intervention for insomnia in cancer survivors.
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He said that risk factors for posttreatment cognitive problems include older age (Ahles et al., 2010) , cognitive reserve (i.e., premorbid intellectual ability)
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Jacobsen noted that the NCCN Survivorship Guidelines for evaluating cognitive problems do not recommend specific interventions. He said more research is needed and several promising interventions merit fullscale trials, but some of the interventions that could potentially be used to address cognitive functioning in cancer survivors include • Cognitive training (Zeng et al., 2016)
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Jacobsen described the recommendations for symptom management issued by the Blue Ribbon Panel convened by the National Cancer Advisory Board under the Cancer Moonshot initiative.19 The panel recommended a strategic research investment using implementation science to accelerate the adoption of integrated systems that gather and monitor patient-reported symptoms and provide decision support and care using 19 See https://www.cancer.gov/research/key-initiatives/moonshot-cancer-initiative/ lue b ribbon-panel/implementation-science-working-group-report.pdf (accessed October 24, 2017)
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FIGURE 4 The phases in translational research. SOURCE: Jacobsen presentation, July 24, 2017.
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, but there are areas in the United States, particularly in the southeast, where rates are still relatively high. Younger cancer survivors (ages 18 to 40)
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The women who were on the low-fat diet lost about 6 pounds over the course of the trial, which reinforces the notion that weight loss may improve outcomes for cancer survivors, DemarkWahnefried reported. She said a summary of 14 research trials evaluating the effect of weight loss interventions on breast cancer survivors concluded that approximately 60 percent of enrollees had weight loss of at least 5 percent, even with relatively short-term interventions (2 to 18 months in duration)
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Assist them if they are ready, for example, by having them set a start date or identifying incremental changes; and 5. Arrange support for that cancer survivor (e.g., referral, prescription)
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He said that many cancer centers do not have tobacco cessation counselors on staff, noting that reimbursement is a barrier, and patients are being referred to tobacco quit lines that are ill-equipped to address the needs of cancer survivors. Jacobsen said the NCI had recently provided supplements to several major cancer centers to improve smoking cessation services, but he added that successful models need to be disseminated to community-based centers.
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. She said studies show that cancer survivors frequently experience functional loss and disability as a result of side effects that often are untreated.
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. Silver said the lack of needed rehabilitation services leads to unnecessary physical and psychological suffering; several studies have documented significant levels of distress and disability among cancer survivors (Banks et al., 2010; Bevans et al., 2014; Penttinen et al., 2011; Weaver et al., 2012)
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PSYCHOSOCIAL WELL-BEING AND FAMILY CONSIDERATIONS IN CANCER SURVIVORSHIP Julia Rowland, director of the NCI's Office of Cancer Survivorship,24 explained that when the office was created in 1996 (in response to advocacy on the part of survivors and those caring for them) , there was recognition that more individuals were living long term following cancer diagnosis, but little was known about the long-term health and quality of life of cancer survivors.
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. Graves said there was no real discussion about her mental health during her cancer treatment.
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While some psychosocial issues are common to having a cancer diagnosis regardless of when the diagnosis was received, there are some unique psychosocial issues faced by young adults and long-term adult survivors of childhood cancer. Adult Cancer Survivors Barbara L
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. She also noted that use of taxanes for adjuvant therapy improves breast cancer outcomes (Anampa et al., 2015)
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. Andersen said that over the past 40 years, psychosocial research has identified effective intervention strategies for cancer survivors, and she suggested ways to improve the delivery of psychosocial interventions for cancer survivors going forward.
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The Childhood Cancer Survivor Study (CCSS) 25 is a multicenter study of cancer survivors of 5 years or more that includes self-reported psychological and quality of life outcomes for more than 7,000 adults, reports from parents on more than 2,900 adolescents (age under 18)
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. Recklitis discussed two significant risk factors for poor psychosocial outcomes among cancer survivors.
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At the other end of the spectrum, Recklitis described the needs of survivors with major mental illness who may need psychiatric care based outside the cancer center. Cancer-focused clinicians can help educate psychiatric and community-based clinicians about the effects of cancer treatment, and in some cases help with case management and serve as liaison between the mental health and oncology professionals, he said.
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. Family Caregiving Issues As a spouse and a caregiver of a cancer survivor, Hedy Wald, clinical professor of family medicine at the Warren Alpert Medical School of Brown University, and director of Resident Resilience and Wellbeing for Residency Programs in Child Neurology and Neurodevelopmental Disabilities at Boston Children's Hospital-Harvard Medical School, discussed the needs of the families who support cancer survivors and the challenges of meeting those needs.
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‘I understand,' he replied." "It really hurts to watch your soul mate suffer," Wald said, adding, "there is loneliness, even when not alone." She said that "when the initial shock and awe wear off and the prepared meals stop arriving at the door, caregiving for cancer patients continues, and often physical, emotional, and spiritual challenges persist for the family caregiver whose own life has radically changed, and handed a new identity without a choice." SOURCES: Wald presentation, July 24, 2017; Wald, 2016.
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Wald observed that the statistics on cancer caregivers are a call to action to address the needs of caregivers: • There were approximately 43.5 million adults in the United States providing care to an adult or child in the preceding 12 months, and cancer was identified as the fourth main reason for which people needed a family caregiver (National Alliance for Caregiving and AARP Public Policy Institute, 2015)
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Much of the research has focused on caregivers of breast and prostate cancer survivors. There have been few longitudinal studies of caregivers' needs; for example, stress and depression have been well researched, but not during the survivorship period, even though many caregivers assist patients beyond the initial cancer treatment.
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Also lacking are studies of possible interventions during the survivorship phase that might affect the caregiver or the patient's outcomes, or relieve family caregivers' burden. Given said, "Family caregivers are the hidden cancer care team members.
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Rowland mentioned research involving caregivers of cancer patients from the Cancer Care Outcomes Research and Surveillance Consortium, which found concordance between caregiver stress and smoking.28 Wald suggested that lifestyle interventions, such as a nutrition consult, be presented to both the patient and 26 See http://www.aarp.org/ppi/info-2017/home-alone-alliance.html (accessed October 2, 2017)
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Given said other policies that support caregivers include tax credits and Social Security credits, workplace accommodations, and payment for caregiving services. Challenges to Implementing Psychosocial Interventions Many workshop participants discussed the lack of progress in getting evidence-based psychosocial services into practice and offered views on various barriers to making beneficial psychosocial interventions a part of routine care.
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Rowland mentioned the NCCN survivorship care plan includes items on health behaviors and global function (Denlinger et al., 2017) and she said that there is a survey tool31 used for individuals entering clinical trials that assesses global quality of life, comorbidity, and health behaviors.
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, discussed problems in the delivery system environment, specifically clinician burnout and compassion fatigue due to insufficient staffing, that impede progress in delivering comprehensive and compassionate care to survivors and their caregivers. SOCIOECONOMIC CONSIDERATIONS IN CANCER SURVIVORSHIP Workshop participants discussed employment, health insurance, and financial status of patients and survivors and examined the interrelationships among them and other aspects of well-being and health.
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These changes in the workforce affect cancer survivors as they try to maintain their employment status. Bradley observed that survivors are very motivated to keep working to retain their health insurance and to combat financial toxicity, as well as to maintain a sense of normalcy, self-worth, and accomplishment that can come from work.
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. Regarding treatment factors, in one study, about half of women with breast cancer reported that cancer treatment interfered with their physical efforts at work (Bradley et al., 2007b)
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. For example, among breast cancer survivors who had lengthy periods of treatment, women who were highly educated and in cognitively demanding jobs tended to suffer the most depression and anxiety, largely because they were highly invested in intensive jobs, but were unable to perform them.
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. Bradley observed that there is little research on spouse employment, but some studies have shown that employed spouses of breast cancer survivors do not change their labor force participation and tend to continue working, largely because women rely on various other types of caregivers, whereas men who are ill and married tend to rely on their wives to be the caregiver (Bradley and Dahman, 2013)
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Research on cancer survivorship and employment has clinical, employment, and policy implications, Bradley said. At the clinical level, she suggested that employment outcomes should be integrated into clinical studies to answer questions about the impact of different kinds of
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In her view, employers need to be educated so they can do a better job of providing the kinds of accommodations that survivors need. The accommodation needs that Bradley heard from breast cancer survivors most often were: flexible schedules; reduced hours, especially during active treatment; and special equipment (e.g., a laptop that could facilitate working at home)
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Additional costs might include supportive agents, advanced imaging tests, and hospitalizations. According to the research, Yabroff said that financial hardship is relatively common among cancer survivors, even many years after treatment.
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Most respondents with a cancer history were long-term cancer survivors, reporting they had been diagnosed more than 5 years ago, and Yabroff said this suggests that the financial hardships reported are long lasting. In a study of cancer survivors in health plans, individuals with lung or breast cancer had greater material financial hardship compared to those with colorectal cancer, prostate cancer, or melanoma (Nekhlyudov et al., 2016)
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Any material financial hardship was defined as having responded yes to one or more of the individual material financial hardship measures. Any psychological financial hardship was defined as having responded yes to ever being worried about paying large medical bills.
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Journal of Clinical Oncology 34(3)
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She said for individuals facing financial hardship, resources may be available, such as financial navigators and special programs. For example, the Cancer Care Equity Program at the Dana-Farber Cancer Institute aims to reduce cancer disparities.38 Financial hardship research continues to evolve, Yabroff said, with ongoing measure development, primary data collection, and use of the MEPS Experiences with Cancer Survey (the 2016–2017 MEPS Experiences with Cancer Survey was in the field at the time of the workshop)
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"e-Patient Dave" deBronkart, co-founder and chair emeritus of the Society for Participatory Medicine and patient advocate, described the voice of patients as "ground truth" and referenced the IOM consensus study report Best Care at Lower Cost (IOM, 2013a) , which identified engaged, empowered patients as an essential characteristic of a continu
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In a discus sion about the costs of skin cancer treatments on his social media blog, deBronkart said a dermatologist told him, "You know, before there was Mohs [surgery] we would just cut it off.
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. Hoffman indicated that the ADA has provided a means for cancer survivors to demand reasonable accommodations and to insist on being treated by employers according to their ability to work, not on the basis of having a disability or cancer.
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In the area of privacy, again, Hoffman 40 See https://www.eeoc.gov/laws/statutes/gina.cfm (accessed February 16, 2018)
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The accommodations can also be more resource intensive, for example, providing an aide to accompany the student to school to take notes, open doors, and record lesson plans. Hoffman described some concerns regarding the future legal rights of cancer survivors.
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She indicated that at the time of the 2006 From Cancer Patient to Cancer Survivor report (IOM and NRC, 2006) , most services for cancer survivors and their families were single services focused on one aspect of care, such as psychosocial support groups; models of survivorship care delivery, such as the pediatric oncology multidisciplinary model, were only beginning to emerge.
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• Patients with a moderate risk of recurrence and late effects, which includes most patients, McCabe said, can benefit from one of three models of follow-up care: o disease-/treatment-specific clinic where the type and intensity A of follow-up care are determined by the type of cancer treatment received. o integrated care clinic embedded in the oncology practice of An a cancer center, community hospital, or private practice.
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• Virtual follow-up care: There are many potential applications of telemedicine (e.g., symptom management, counseling, and monitoring of the survivorship care plan) , and the interest in virtual follow-up care is growing, McCabe said (Cole-Vadjic and Crews, 2016; Warrington et al., 2015)
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In her view, a survivorship care plan is a way to document what is understood by both the patient and his or her clinicians and it helps ensure the involvement of the primary care clinician.
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It is about the relationships, and it is about having a willing co-creator who is actually going to view the plan as a covenant." She observed that participation in care creates agency on the part of the patient and this, in turn, usually leads to engagement, adherence to treatment, and improved outcomes. In stressing the importance of patient engagement, Gaines said, the health care system produces treatment protocols, survivorship care plans, and entire cancer centers without ever asking the users.
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. To expand its outreach to rural cancer survivors, the Moncrief Cancer Institute in Fort Worth, Texas, launched a first-of-its-kind mobile survivorship clinic to provide prevention, early detection, patient navigation, and survivorship services to the medically underserved in 35 mostly rural counties in north Texas (see Box 10)
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Some of the impetus for the establishment of the survivorship care program was the 2006 IOM From Cancer Patient to Cancer Survivor report and the 2012 CoC accreditation requirements for distress screening and survivorship care planning. He said when the survivorship clinic was initiated in 2012, cancer patients in the hospital's catchment area were invited to come for a 45-minute survivorship care plan visit to discuss issues related to late effects and recurrence, complete a distress screen, and address lifestyle and health promotion.
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"For a while we had care plans for each different diagnosis and we would have a nurse navigator develop these care plans, and then we would deliver the care plans individually. We found that it was just too time consuming.
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had had breast cancer, 11 percent melanoma, 7 percent colorectal cancer, 7 percent head and neck cancer, 6 percent prostate cancer, 5 percent cervical cancer, and the remaining 20 percent had had other cancers. An assessment of the mobile clinic's outcomes from 2013 to 2016 saw a 31 percent increase in breast cancer screening and a 28 percent increase in colorectal cancer screening.
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Many cancer survivors lack primary care medical management to guide non-oncological health care, so the survivorship clinic often makes referrals to establish a primary care relationship. Franco shared her vision of future potential survivorship care: • Embedded satellite clinics to complement destination programs; • Telemedicine for genetic counseling and other services that do not require a physical examination; • Self-management with support from credible advocacy organizations (e.g., Cancer Support Community, the ACS)
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The CIOS also collaborates with the Cancer Support Community,44 a national advocacy organization that has assisted the CIOS with the development of programs tailored to the needs of cancer survivors and helps patients with online and telephone counseling to address personal and financial concerns. Survivorship Care Delivered by Independent Medical and Nonprofit Organizations Jay Burton, founder and president of the Primary Care Cancer Survivorship Program of Western Massachusetts, is a physician and a survivor of acute myeloid leukemia and a stem cell transplant.
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He said the program is part of a national organization for volunteer management in cancer care, whose members include the Dana-Farber Cancer Institute, The University of Texas MD Anderson Cancer Center, and the Cleveland Clinic. Burton and colleagues are also working on developing a speaker's bureau to meet the needs of survivors and providers in communities distant from cancer centers, noting the value of the GW collaborative e-learning series on survivorship.47 Dissemination and Implementation Science in Cancer Survivorship Care Delivery David Chambers, deputy director for implementation science in the division of cancer control and population sciences at the NCI, described dissemination and implementation science and its role in cancer survivorship care delivery.
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Taking demand into account is complicated, he said, involving consideration of clinicians, administrators, payers, and most importantly, patients and families. Chambers conveyed that an evidencebased program for survivorship care is only beneficial if it is adopted within systems of care, clinicians are trained to deliver it appropriately and can incorporate it into their practice, and eligible patients receive it (Belza et al., 2007)
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, Chambers said the NCI refers to this work as "implementation science," while the NIHlevel activities have typically fallen under the heading of "dissemination and implementation research." Implementation research contrasts with intervention research by shifting away from the typical question of "what do I provide to a patient" (e.g., empirically supported treatments or evidence-based practices) to an emphasis on "how do I get that intervention delivered within health systems," emphasizing implementation outcomes like feasibility, acceptability BOX 11 Dissemination and Implementation Key Terms Implementation science is the study of methods to promote the integration of research findings and evidence into health care policy and practice.
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Chambers described a review of 61 dissemination and implementation models, suggesting that a substantial body of knowledge exists for dissemination and implementation science (Tabak et al., 2012)
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. 49 See http://www.academyhealth.org/events/site/10th-annual-conference-science- dissemination-and-implementation-health (accessed September 1, 2017)
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Chambers also described several NCI-funded projects52 under way that are related to cancer survivorship in the areas of care coordination, delivery systems, and communication. The NCI maintains an inventory of vidence-based practices through its Research-Tested e Intervention Programs website,53 including some related to survivorship and supportive care.
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POLICY OPTIONS TO IMPROVE CANCER SURVIVORSHIP CARE Workshop participants discussed existing policy initiatives in the public and private sectors. Many suggested areas where new policy development is needed to address current gaps in survivorship care and service delivery to improve care for cancer survivors.
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In his experience, payment systems do not address many of the needs of patients. He suggested asking patients to define what should be measured and rewarded, and asking oncologists who are not providing survivorship care plans to explain why they are not, and then what would compel them to adopt the practice.
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Baron described an ABIM Foundation initiative, Choosing Wisely®, which is intended to spur conversation about what comprises appropriate and necessary treatment, and to curb common practices that are not supported by evidence. Choosing Wisely® promotes patient–clinician conversations to help patients avoid unnecessary medical tests and procedures.57 Baron said there are two recommendations from ASCO that are relevant to breast cancer survivorship among the various practice recommendations included in Choosing Wisely®.
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In closing, Baron said it is important "to maintain an oversight regime of professional self-regulation to help oncologists stay current in their field, and to represent to their patients and their colleagues that they have done so." Nekhlyudov asked Baron whether modules could be developed that focus on survivorship issues such as surveillance and late effects, or whether a cancer survivorship subspecialty might be considered. Baron replied that any conversation about the possibility of a survivorship subspecialty would most likely begin within ASCO and the oncology community; the role of ABIM in recognizing this level of expertise would be by making a credential available, should this be identified as a need by the oncology community.
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Internet-based modules could possibly be embedded into existing coursework. Schneider said that care provided to cancer survivors by advanced practice nurses is associated with improvements in patient satisfaction and compliance (Nevidjon et al., 2010)
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Jean Rosiak, ONS director-at-large and nurse practitioner at Aurora Medical Group, said a solution to many of the challenges of survivorship care could be met if the nursing scope of practice was standardized and nursing educational programs were expanded to include survivorship training. Fertility Issues in Adolescent and Young Adult Cancer Survivorship Brandon Hayes-Lattin, associate professor of medicine in the division of hematology and medical oncology at Oregon Health & Science University and medical director of the AYA Oncology Program at the university's Knight Cancer Institute, discussed policies affecting fertility, one of the defining issues in cancer care for AYA.
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House of Representatives bill, the Deferment for Active Cancer Treatment Act of 2017,66 that would require the deferment of interest and payments to federal student loans when someone is undergoing active cancer treatment. He viewed this bill as representing a creative solution to the potential for financial toxicity that clinicians and advocacy groups can support.
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The service would be available to cancer patients in active treatment and beyond, into long-term survivorship. The care plan envisioned in this Act would facilitate shared decision making and encourage a multidisciplinary approach to treatment and symptom management.
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In 2012, the CoC examined its existing standards and based on the IOM's 2005 report From Cancer Patient to Cancer Survivor and the recommendation of medical rofessionals and patient p advocacy groups, developed a standard for the provision of survivorship care plans beginning in 2015 (see Box 12)
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Programs are accredited for 3 years and every year about 500 programs are accredited. The 500 programs accredited in 2016 were surveyed and asked to report on their experience with survivorship care plans in 2015, when the requirement was for 10 percent of the patients to receive a survivorship care plan.
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Shulman also acknowledged the lack of evidence on whether and how survivorship care plans improve care, and he said the CoC would decide whether or not to maintain the survivorship care planning standard in the fall of 2017.68 He added that the input from the National Cancer Policy Forum's workshop would be invaluable, and other input is welcomed. 68 As of December 11, 2017, "the percentage of delivered survivorship care plans to eligible patients required for Commission on Cancer (CoC)
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Simon said he did not benefit from a cancer survivorship program upon completion of his treatment, but received appropriate care though the advice of knowledgeable friends and by having a good health insurance plan. He suggested that there are likely thousands and maybe millions of individuals who have not been followed up with the same vigor because of their lack of resources.
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The fifth factor Alfano mentioned is the skyrocketing cost of cancer care, as well as the medical costs associated with managing the comorbidities suffered by cancer survivors. Risk Stratification Alfano suggested the use of a risk-stratified follow-up strategy employed in the United Kingdom,69 where the number of clinicians, the kind of clinicians seen, and the intensity of the interventions vary according to the needs of the patient.
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V Hudson, Integrating primary care providers in the care of cancer survivors: Gaps in evidence and future opportunities, e30–e38, Copyright 2017, with per 109 mission from Elsevier.
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System Changes Alfano also proposed strategies to promote changes in the mindset about survivorship, in survivorship care delivery models, and in the language used to talk about cancer survivorship. To change the mindset about what survivorship is and when it starts, Alfano suggested that survivorship be conceptually defined as starting at diagnosis, with a focus on prevention, such as screening for and prompt management of potential toxicities, second cancers, and recurrences.
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2003. The relationship of APOE genotype to neuropsychological performance in long-term cancer survivors treated with standard dose chemotherapy.
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2006. Recovery issues in cancer survivorship: A new challenge for supportive care.
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Journal of Cancer Survivorship 2(3)
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Journal of Cancer Survivorship 7(2)
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In Health services for cancer survivors: Practice, policy and research, edited by M Feuerstein and P
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2007. Handbook of cancer survivorship.
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2013. Economic burden of cancer survivorship among adults in the United States.
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2011. Cancer survivorship research: A review of the literature and summary of current NCI-designated cancer center projects.
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2007. Implementing cancer survivorship care planning: Workshop summary.
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in cancer survivors. Sleep Medicine Reviews 27(Suppl C)
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Journal of Cancer Survivorship 10(1)
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2015. Summing it up: An integrative review of studies of cancer survivorship care plans (2006–2013)
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2012. Adherence to adjuvant hormonal therapy among breast cancer survivors in clinical practice: A systematic review.
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Journal of Cancer Survivorship 10(6)
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2017. Provision of integrated psychosocial services for cancer survivors post-treatment.
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2016. Recap: ASCO core curriculum for cancer survivorship education.
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2011. Catechol-o-methyltransferase genotype modulates cancer treatment-related cognitive deficits in breast cancer survivors.
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2015. An evaluation of cancer survivorship activities across National Comprehensive Cancer Control programs.
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Journal of Cancer Survivorship 2(1)
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2016. Financial hardship associated with cancer in the United States: Findings from a population-based sample of adult cancer survivors.
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Key Terms
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