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Diagnosing and Treating Adult Cancers and Associated Impairments (2021)

Chapter: 10 Survivorship Outcomes and Care Delivery

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Suggested Citation:"10 Survivorship Outcomes and Care Delivery." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"10 Survivorship Outcomes and Care Delivery." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"10 Survivorship Outcomes and Care Delivery." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"10 Survivorship Outcomes and Care Delivery." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"10 Survivorship Outcomes and Care Delivery." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"10 Survivorship Outcomes and Care Delivery." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"10 Survivorship Outcomes and Care Delivery." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"10 Survivorship Outcomes and Care Delivery." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"10 Survivorship Outcomes and Care Delivery." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"10 Survivorship Outcomes and Care Delivery." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"10 Survivorship Outcomes and Care Delivery." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"10 Survivorship Outcomes and Care Delivery." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"10 Survivorship Outcomes and Care Delivery." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"10 Survivorship Outcomes and Care Delivery." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"10 Survivorship Outcomes and Care Delivery." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"10 Survivorship Outcomes and Care Delivery." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"10 Survivorship Outcomes and Care Delivery." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"10 Survivorship Outcomes and Care Delivery." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"10 Survivorship Outcomes and Care Delivery." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"10 Survivorship Outcomes and Care Delivery." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"10 Survivorship Outcomes and Care Delivery." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"10 Survivorship Outcomes and Care Delivery." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"10 Survivorship Outcomes and Care Delivery." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"10 Survivorship Outcomes and Care Delivery." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"10 Survivorship Outcomes and Care Delivery." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"10 Survivorship Outcomes and Care Delivery." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"10 Survivorship Outcomes and Care Delivery." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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Suggested Citation:"10 Survivorship Outcomes and Care Delivery." National Academies of Sciences, Engineering, and Medicine. 2021. Diagnosing and Treating Adult Cancers and Associated Impairments. Washington, DC: The National Academies Press. doi: 10.17226/25956.
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10 Survivorship Outcomes and Care Delivery As is evident from the preceding chapters, the diagnosis and treatment of cancer (Chapter 4), particularly breast cancer (Chapter 5) and lung can- cer (Chapter 6), as well as other selected cancers (Chapter 7), have made substantial advances over the years, leading to improved survival rates. Nevertheless, many cancer survivors experience long-term and late-onset impairments that can affect their functioning and quality of life. Further- more, the long-term impacts of many new and emerging treatments for cancer are as yet unknown. The focus of this chapter is on opportunities to improve survivorship outcomes, specifically within the context of patient- centered care. The chapter also identifies key members of the cancer care team, describes the settings where care occurs, and explores the challenges inherent in delivering high-quality, comprehensive care throughout the care trajectory, particularly interventions to promote return to work and other activities valued by cancer survivors. Finally, the chapter outlines emerging approaches to cancer care delivery that may improve future outcomes. PATIENT-CENTERED CANCER CARE As stated in the Institute of Medicine (IOM) report Delivering High- Quality Cancer Care: Charting a New Course for a System in Crisis (IOM, 2013), the goal of cancer care should be “delivering comprehensive, pa- tient-centered, evidence-based, high-quality cancer care that is accessible and affordable to the entire U.S. population, regardless of the setting where cancer care is provided” (p. 3). Inherent in this concept of cancer care is that patients and their caregivers have the necessary information needed 317 PREPUBLICATION COPY—Uncorrected Proofs

318 DIAGNOSING AND TREATING ADULT CANCERS to make informed medical decisions and the knowledge and skills for self-management. Prior National Academies of Sciences, Engineering, and Medicine reports have emphasized the need for patient-centered care as the cornerstone of high-quality health care, with patient-centered care defined as “providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions” (IOM, 2001, p. 40). Such care means that one size does not fit all, but rather that care is tailored to the individual patient. Thus, while guidelines advise clinicians on how to treat the population of cancer patients and several recommend the use of shared decision making with the patient and a multidisciplinary care team (see Chapter 4), the concept of personalized, patient-centered care means that treatments will need to be adapted to meet the characteristics (e.g., age and comorbidities) and prefer- ences of the patient as well as the biology of his or her specific cancer (e.g., staging and biomarkers). As shown in Figure 10-1 (and described in Chapter 4), the cancer care trajectory represents health care pathways for cancer patients. Patients first engage in the trajectory at the time of diagnosis, following which, they receive cancer-directed treatment (e.g., surgery, chemotherapy, radia- tion therapy) with or without the intent to cure (some cancers are slow- growing and are monitored until treatment is necessary). Some patients with advanced-stage cancers may transition to end-of-life or palliative care if they are ineligible for or choose not to receive treatment. As illustrated in Figure 10-1, cancer care is not linear: after the initial treatment, some patients may experience periods in which they are cancer free or living with chronic, stable, or intermittent disease. These individuals benefit from surveillance for recurrent and new cancers, the management of late-onset and long-term effects of treatment, and the promotion of general health Supportive/Palliative (d) Care and Survivorship Care for All Cancer Cancer Free— Patients, Management (b) No Evidence of Late and Long-Term of Disease Effects of Treatment (a) Cancer-Directed and Promotion of Treatment with (e) General Health and Diagnosis, Curative Intent Chronic, Stable, Wellness Staging, and or Intermittent Treatment (c) Disease Surveillance for Planning Cancer-Directed (g) Recurrent and New Treatment with (f) Recurrence or Primary Cancers Noncurative Intent Disease New Primary Progression Cancer FIGURE 10-1 The cancer care trajectory. SOURCE: Adapted from IOM, 2006. PREPUBLICATION COPY—Uncorrected Proofs

SURVIVORSHIP OUTCOMES AND CARE DELIVERY 319 and wellness. Cancer survivors may experience a recurrence or progression of their cancer and resume active treatment months or even years after completing initial treatment. Post-treatment survivorship care may be continuous or intermittent, depending on the cancer type, the stage, and the response to treatment; this phase of care may last much longer than the active-treatment phase. At any point in the cancer care trajectory, beginning with diagnosis and often in conjunction with active cancer treatment, patients may receive supportive or palliative care (distinct from end-of-life care) for relief from the symp- toms and stress of serious illness, with the goal of improving the quality of life for the patient and caregivers (NCP, 2018). Palliative care attends to the physical, functional, psychological, practical, and spiritual needs of the survivor and can include assessment and management of the survivor’s symptoms, assessment and support of caregiver needs, and the planning and coordination of care (IOM, 2013). Early integration of palliative care into cancer treatment has been shown to improve quality of life and 1-year survival, but not symptoms or use of health care services (Bakitas et al., 2009, 2015; Kassa et al., 2018; Temel et al., 2010). Early palliative care was also found to improve patients’ understanding of their prognoses (Temel et al., 2011). Supportive care includes the routine assessment and reassess- ment of survivors for unmet needs such as their need for information and educational materials, psychological and physical health, and social sup- port. Addressing these unmet needs will help individualize a survivor’s care. Recently, the introduction of multimodal prehabilitation, that is, reha- bilitation that occurs before cancer treatment begins to improve tolerance to surgery or other treatments (Carli et al., 2017), has been associated with improved post-treatment survivor function (Faithfull et al., 2019) and improved disease-free survival (Trépanier et al., 2019). The compo- nents of prehabilitation vary but generally include nutritional supplementa- tion, physical activity, and psychological support. Other components may include comprehensive functional evaluation to establish a pretreatment baseline, physical and occupational therapy for existing and anticipated impairments, and education about the prevention and management of treatment-related adverse effects and impairments (Bolshinsky et al., 2018). Following cancer treatment, survivors may need rehabilitation inter- ventions for impairments resulting from their cancer or its treatment as discussed in Chapter 9. As with prehabilitation, rehabilitation services may provide the cancer survivor with the interventions necessary to not only mitigate and manage long-term and late-onset effects of their treatment (e.g., occupational therapy, physical therapy, psychotherapy, medications), but also to manage comorbid health conditions. Development of self- management skills and education on health promotion interventions (e.g., lifestyle and exercise) provided as in the context of comprehensive cancer PREPUBLICATION COPY—Uncorrected Proofs

320 DIAGNOSING AND TREATING ADULT CANCERS rehabilitation may also decrease the risk of additional late-onset effects such as cardiac, pulmonary, or musculoskeletal impairments of cancer treatment (Alfano et al., 2012). A stepped approach to cancer rehabilitation can help tailor the program to the individual survivor’s needs, with some survivors needing fewer interventions whereas other survivors may have more com- plicated needs and require more intensive and long-term rehabilitation interventions (Alfano et al., 2016). The committee does not address end-of-life care as it was beyond the scope of its task, but it is an important phase of the cancer care trajectory. Survivorship Care Survivorship care provides cancer-related and supportive interventions that address the individual needs of each survivor. As shown in Figure 10-2, high-quality survivorship care includes the delivery of care in five domains that are interrelated and often codependent (Nekhlyudov et al., 2019). In addition to these domains, other integral aspects of this care are effective communica- tion between patients and their health care providers and care coordination across clinicians (discussed later in the chapter). Care within and across each domain, as well as early assessment and treatment, can help improve survivor outcomes and reduce impairments, from mitigating pain to increasing partici- pation in daily activities and boosting a survivor’s ability to work. FIGURE 10-2 Domains of cancer survivorship care. None of the five domains are mutually exclusive, and all should be considered as critical aspects of survivorship care. SOURCE: Adapted from Nekhlyudov et al., 2019. PREPUBLICATION COPY—Uncorrected Proofs

SURVIVORSHIP OUTCOMES AND CARE DELIVERY 321 The five domains of survivorship care are: • Prevention and surveillance for recurrences and new cancers. The occurrence of new primary cancers (i.e., new cancers diagnosed in cancer survivors) rose dramatically from 9% of all cancer diagno- ses in 1975–1979 to 19% of all cancer diagnoses in 2005–2009 as a result of both an increase in the population of cancer survivors and an aging U.S. population (Morton et al., 2014; Murphy et al., 2018). As described in preceding chapters, survivors may be at an increased risk for new cancers due to the type of and treatment of initial cancer as well as behavioral or genetic risk factors (Ganz and Castillas, 2020). Survivorship care entails an assessment of such risk factors followed by surveillance for recurrences and the development of new cancers. • Surveillance and management of the physical effects of cancer and its treatment. Cancer survivors may experience long-term and late-onset adverse physical effects (e.g., affecting cardiovascular and musculoskeletal health). As previously described, these may be acute, long-term, or late-onset effects and may damage a survivor’s ability to work and conduct other normal activities. The presence, number, and severity of these effects may be related directly to the cancer, to its treatment, or to other factors such as comorbidities. As these physical effects are diagnosed, appropriate treatments should be implemented. (See Chapter 9 for more information on the long-term and late-onset physical effects of cancer and its treatment.) • Surveillance and management of psychosocial effects of cancer and its treatment. The psychosocial burden of cancer may be substan- tial and prolonged. Mental health conditions such as depression, anxiety, and fear of recurrences may develop or be exacerbated at any time during the trajectory. Survivors may also experience stress as a result of financial hardship, including the lack of or changes in insurance coverage as well as changes in employment or educa- tion status. Survivors may also have interpersonal concerns such as sexuality or intimacy, fertility, and family and caregiver relation- ships. Referrals to appropriate specialty care and counselors can help manage these effects. (See Chapter 9 for more information on long-term and late-onset psychological effects of cancer and its treatment.) • Surveillance and management of chronic medical conditions. Given that the median age of U.S. adults at the time of their cancer di- agnosis (66 years), it is expected that many of survivors will have chronic comorbid conditions (e.g., heart conditions or diabetes) PREPUBLICATION COPY—Uncorrected Proofs

322 DIAGNOSING AND TREATING ADULT CANCERS that were present prior to or developed after the cancer diagno- sis. These comorbidities may interact with cancer- and treatment- related physical and psychosocial effects and may require ongoing treatment and rehabilitation to preserve function and prevent a further decline in health. • Health promotion and disease prevention education. Population data show that cancer survivors are often obese and less active than those without cancer, and some survivors continue to smoke (CDC, 2020). Assessment and counseling regarding lifestyle and health behaviors may help reduce the risk of new and recurrent cancers and may reduce overall and cancer-specific mortality. Clini- cians caring for cancer survivors should work together to assess a survivor’s readiness for behavior change. Survivorship care is complex, and each of the five domains is critical to the provision of patient-centered care although the focus may vary based on the patient’s characteristics, cancer type, and treatment. Survivorship care across the domains is managed by different members of the survivor’s health care team with the active participation of the patient or caregiver or both. For example, surveillance for recurrences may be managed by the oncologist, while health promotion and chronic diseases may be co- managed by the patient and his or her primary care provider and may also include disease-based specialists such as cardiologists, gastroenterologists, and endocrinologists. The management of the physical and psychological effects (described in Chapter 9) may require a variety of health care provid- ers, including oncologists, primary care providers, and specialists (such as physiatrists, speech and language pathologists, physical and occupational therapists, and exercise physiologists). Rehabilitation practitioners and ex- ercise physiologists may be engaged to ensure that any exercise or physical activity interventions are safe within each survivor’s functional limitations (Stout et al., 2020). Survivorship care calls for the dissemination and implementation of evidence-based treatments for the many possible adverse effects and im- pairments that can afflict cancer survivors. Despite strong evidence for the benefits of exercise in dealing with many of the persistent adverse effects of cancer treatment (Campbell et al., 2019; Patel et al., 2019, Schmitz et al., 2019), it is estimated that fewer than one-third of cancer patients are referred to exercise programming by their oncology health care provider (Cheville et al., 2011; Hardcastle et al., 2018; Nadler et al., 2017; Nyrop et al., 2016; Webb et al., 2016). In addition, research has shown that while 90% of cancer patients have impairments that could be ameliorated with rehabilitation therapies, only about 20% are referred to physical or occu- pational therapy as well (Pergolotti et al., 2015; Stubblefield et al., 2017). PREPUBLICATION COPY—Uncorrected Proofs

SURVIVORSHIP OUTCOMES AND CARE DELIVERY 323 The Patient and the Cancer Care Team Cancer care during and following treatment can be prolonged and involves many clinicians, other health care professionals, and caregivers in addition to the patients themselves (see Figure 10-3). While historically med- ical care adopted a paternalistic approach to the provision of health care, recently much attention has focused on having the patient and his or her family support system (see Figure 10-3) be the most important members of the health care team and patients are expected to self-manage their own care. The Patient Functional and quality-of-life deficits associated with treatment for cancer are amenable to intervention; however, these interventions require, at least in part, patient self-management. Patients require knowledge, edu- cation, and support to access these interventions in a manner that will allow them to return to their most optimal function and quality of life after cancer; hence, there has recently been an emphasis on “supported Physicians Providing Oncology Care Mental Health Nurses Professionals and Spiritual Workers Palliative Patients and Care Pharmacists Caregivers Practitioners Patient–Provider Interactions Advanced Practice Rehabilitation Providers Specialists (NPs and PAs) Clinicians Providing Non-oncologic Care FIGURE 10-3 The cancer care team. NOTE: NP = nurse practitioner; PA = physician assistant. SOURCE: Adapted from IOM, 2013. PREPUBLICATION COPY—Uncorrected Proofs

324 DIAGNOSING AND TREATING ADULT CANCERS self-management” (Howell et al., 2017). True supported self-management requires the care team to engage patients and caregivers in active manage- ment strategies, including goal setting, problem solving, communication, and enhanced personal control of the cancer care. Such as approach may require fundamental changes to the way clinicians communicate and engage with cancer survivors and their caregivers. Many patients, even those who are highly motivated, may find it dif- ficult to manage acute treatment, navigate the health care system, adopt healthy lifestyles, coordinate care for comorbidities and polypharmacy, and cope with the psychosocial effects of normal daily life as well as cancer. Support for patient self-management may include providing patients with information, skill development, medical records, and online resources and offering more active support, such as motivational interviewing or coaching for behavior change and cognitive–behavioral and other self-modification skills (Howell et al., 2017). These resources should be tailored to a pa- tient’s health literacy and language (Koay et al., 2012). When supportive approaches, such as shared decision making and chronic disease self-man- agement (IOM, 2013), are used, it is important that patients and caregivers be informed about the availability of evidence-based treatments (including the availability of clinical trials) and rehabilitation services, including pal- liative care, to restore or maintain function and quality of life during and after active cancer treatment. The Cancer Care Team Physicians caring for cancer patients may include primary care prac- titioners (e.g., family medicine, general medicine, internists, obstetrician/ gynecologists), surgeons (e.g., general surgery, surgical oncology, otolaryn- gology, urology), medical oncologists, radiation oncologists, other medical specialists (e.g., cardiologists, pulmonologists, psychiatrists), and palliative care specialists. Advanced practice providers (e.g., nurse practitioners and physician assistants) provide direct care and, depending on the state regulations, may function independently or under the supervision of physicians in both cancer and primary care settings. Nurses are also key team members and assist with triage, the delivery of cancer treatments, monitoring symptoms, and providing psychosocial support. Primary care clinicians, whether physi- cians or advance practice providers, are typically the patient’s first resource for cancer screening and diagnosis before they are referred to specialists for treatment. These clinicians may be responsible for a patient’s overall health monitoring during and after active cancer treatment and for the treatment of any long-term effects or comorbidities, and they may also play a key role in supporting patients in regaining function and returning to work. PREPUBLICATION COPY—Uncorrected Proofs

SURVIVORSHIP OUTCOMES AND CARE DELIVERY 325 The cancer care team may also include rehabilitation specialists (e.g., physical or occupational therapists, physiatrists, exercise physiologists, rehabilitation nurses, and speech–language pathologists). Rehabilitation physicians (physiatrists) can discuss treatment options that could mini- mize the risk of functional impairment. For example, in situations where limb-sparing surgery or amputation is anticipated (e.g., for sarcomas), the physiatrist may advise on issues such as internal prostheses or optimal amputation points to facilitate external prosthetic wear. Dieticians provide support and education in managing appetite, nutrition, nausea, and weight loss. Palliative and supportive care specialists help patients and families to manage a wide range of symptoms, including pain, gastrointestinal adverse effects (nausea, constipation, diarrhea), and insomnia and fatigue. A re- habilitation team composed of rehabilitation medicine physicians, nurses, physical and occupational therapists, and speech language pathologists treats strength, coordination, balance, and pain as well as altered bowel and bladder functions and complex wound management. Pharmacists are important for advising the team about appropriate medication regimens and monitoring for potentially harmful drug–drug and drug–food interactions. Clinical and psychosocial supportive care may be provided by nurses, mental health professionals, social workers, navigators, nutritionists, dental care providers, and spiritual counselors (IOM, 2013; NASEM, 2018, 2019). Psychiatrists, psychologists, and social workers ad- dress anxiety, depression, and family communication and decision-making issues. The availability of these professionals varies by the clinical setting and by geographic and socioeconomic boundaries and variations in insur- ance regulations, and some patients, particularly those in underserved com- munities, may not even have access to these professionals. Coordination and Communication Across the Cancer Care Team Comprehensive and coordinated care management is integral to high- quality patient-centered cancer care, and it relies on access to necessary services, with the components of care efficiently planned and integrated. The IOM report Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis focused on the ways that the patient, clini- cians, and the health care system interact to influence patient-centered care and improve communication and health outcomes. The report stated that patient-centered care includes fostering good communication between pa- tients and their cancer care team; developing and disseminating evidence- based information to inform patients, caregivers, and the cancer care team about treatment options; and practicing shared decision making. (IOM, 2013, p. 91) PREPUBLICATION COPY—Uncorrected Proofs

326 DIAGNOSING AND TREATING ADULT CANCERS As described above, survivorship care involves numerous clinicians across a variety of settings, which can make it difficult to maintain communication and coordination of care among and between providers and survivors. The complexity of the health care system, particularly the cancer care system, and the nature, severity, and duration of survivors’ physical and mental symptoms and impairments related to their cancer and its treatment can make care seeking challenging (IOM, 2008). With cancer care moving away from the inpatient, hospital setting toward outpatient settings and home, the burden of care coordination and supportive care—managing multiple appointments with different specialists in a variety of health care settings—may fall largely on survivors and their caregivers. Support, resources, and guidance for ap- propriate survivorship self-management, described above, are thus critical components of the cancer survivorship trajectory which sometimes may be lacking. Survivors may need to be connected to appropriate resources such as patient support groups or care navigators who can work with them to attain the best-possible physical function and quality of life. In holistic, patient- and family-directed, supported self-management, each transition in a cancer survivor’s care trajectory requires the timely and accurate transfer of information about the patient from one health care clinician to another. This is made difficult by the fact that at each transition there is the potential for delayed, missed, or misinterpreted diagnostic and treatment information; miscommunication among various providers; and a lack of communication with survivors and their caregivers (IOM, 1999). Furthermore, survivors may experience poor, delayed, and discrepant com- munication among care team members, including primary care providers and oncologists, regarding roles and expectations (Dossett et al., 2017). Survivors may not receive all of the information they want or need to manage their lives during and after treatment. Patients need understandable information about their cancer prognoses, treatment benefits and harms, palliative care, psychosocial support, and the costs of care; such information is often un- available or not regularly communicated (IOM, 2013). Studies have shown that provider peer-to-peer consultatives can also improve patient outcomes (Fishman et al., 2012). Cancer patients make frequent inquiries about such supportive services as rehabilitation, and health providers are often asked about support groups, counseling, nutrition, financial aid, health insurance, and employment which may all affect the survivor’s outcomes (IOM, 2006). Patient Navigation Patient navigation was originally developed as a community-based service delivery intervention to promote access to the timely diagnosis and treatment of cancer and other chronic diseases by eliminating barriers to care (Freeman and Rodriguez, 2011). Patient navigation assists individual PREPUBLICATION COPY—Uncorrected Proofs

SURVIVORSHIP OUTCOMES AND CARE DELIVERY 327 patients, families, and caregivers in obtaining services, both health and psychosocial, to help them overcome barriers in the health care system to achieve optimal care. Patient navigation can begin when the patient enters the health care system, even prior to diagnosis, and can continue through- out the cancer care trajectory (ONS et al., 2010), and patient navigation resources may improve communication and care coordination. Patient navi- gators can be clinicians or non-clinicians, in which case they are often called lay navigators. Research on patient navigation in cancer has found that navigation programs have an increased uptake of and adherence to cancer screening, greater timeliness of cancer diagnosis, higher completion rates for cancer treatment, and higher rates of patients attending medical appointments (Bernardo et al., 2019). However, in a review of 113 articles the majority of patient navigation studies were found to be focused on cancer screen- ing (50%) and diagnosis (27%) and on only a limited number of cancer types (primarily breast and colorectal cancer) (Bernardo et al., 2019). Only a few evaluations of navigators in cancer survivorship have been conducted to date; thus more research is needed to fully understand their benefits. Information Technology A critical aspect of communication and coordination among the cancer care team is access to the patient’s health information, from laboratory tests to caregiver information, and the ability to share that information among providers and to convey information to and from the patient. Elec- tronic health records (EHRs) are one mechanism that can be used to record information from the patient in one location. Many health care practices provide patients with online access to their EHRs to allow them to track their health information, communicate with their care team, and request refills of medications (Johnson et al., 2020). Patients with cancer are more likely than those without cancer to access their online health information at least once per year (Johnson et al., 2020). Information technology is also expanding the use of telemedicine, permitting providers to have appoint- ments with their patients outside the office environment. Both of these information technology approaches are discussed below. Electronic health records and the use of patient-reported outcomes The Of- fice of the National Coordinator for Health Information Technology defines an EHR as a digital version of a patient’s paper chart. EHRs are real-time, patient-centered records that make information available instantly and securely to authorized users (ONC, 2019). The 2009 Health Information Technology for Economics and Clinical Health Act provided incentives PREPUBLICATION COPY—Uncorrected Proofs

328 DIAGNOSING AND TREATING ADULT CANCERS for EHR adoption, and most hospitals now use EHRs (Adler-Milstein et al., 2017); the use of EHRs continues to expand among clinicians in non-hospital-based practices. There has been some variability in adoption and use by physician specialty, with higher rates among primary care and family medicine practices than in some other specialties (Grinspan et al., 2013). EHRs combined with the ability to exchange health information electronically provide safer and higher-quality care by providing current and complete patient information at the point of care, allowing for better coordination of care and safer prescribing (ONC, 2019). EHRs can also allow for increased patient engagement with the incor- poration of patient-reported outcome measures (PROMs). PROMs provide significant value-added information to routine clinican assessments (Ather- ton et al., 2015; Lagendijk et al., 2020) and are important in clinican–pa- tient communication and medical decision making (Kotronoulas et al., 2014; Tolstrup et al., 2020). The real-time use of PROMs and feedback to clinicans have also been shown to improve symptom management, quality of life, and patient survival (Basch et al., 2016, 2017). Incorporat- ing PROMs in EHRs relieves clinical staff of the burden of questionnaire administration and data entry and has been shown to be cost-effective (Lizée et al., 2019). While some accrediting agencies have mandated the assessment of specific PROMs in practice—such as for pain and distress screening (Lazenby et al., 2015)—the routine inclusion of PROMs in EHRs is minimal at present, although some large clinical trials and initiatives are under way (Brunelli et al., 2020). Consortia such as the International Consortium for Health Outcomes Measurement are working to improve value-based health care by defining global standard sets of PROMs, includ- ing for several types of cancer, and driving the adoption and reporting of these measures in EHRs (ICHOM, n.d.). For example, 6 years ago there were about 30 electronic PRO systems available for incorporation into the EHR (Jensen et al., 2014), but there are now many more options available, such as toolkits and software, including open source solutions (Snyder et al., 2019). As the demand for value-based care grows, the routine incor- poration of PROMS into EHRs as quality metrics and for cancer program accrediation is likely to expand. Telemedicine The use of information and telecommunications technologies to provide and support health care when distance separates the participants (IOM, 1996) is used to enhance the delivery of health care to geographi- cally disadvantaged and medically underserved populations, with the goal of improved quality of care and decreased costs (Ackerman et al., 2010). The use of telemedicine expanded somewhat over recent decades and grew even more during the coronavirus disease 2019 (COVID-19) pandemic in 2020. It has helped enhance the engagement of patients in their care and PREPUBLICATION COPY—Uncorrected Proofs

SURVIVORSHIP OUTCOMES AND CARE DELIVERY 329 has improved the ability of health care providers to continuously monitor their patients, identify early symptoms, and respond promptly to exacerba- tions of patients’ illnesses (Bashshur et al., 2014). A systematic review of studies on the effectiveness of telephone-delivered interventions for reduc- ing cancer symptoms found that the use of mental health interventions for cancer symptoms such as depression, anxiety, emotional distress, and fatigue was effective but that the impact of telemedicine on reducing other cancer symptoms was unknown (Ream et al., 2020). Telemedicine has been shown to be effective in providing cancer survivors with behavioral inter- ventions designed to improve their quality of life during and after treatment and may be particularly advantageous for survivors living in remote areas (Freeman et al., 2015). Tarver and Haggstrom (2019) found that patient-centered techological approaches, including internet-based (electronic health) technologies, mo- bile (mobile health) apps, and telemedicine that primarily targeted African Americans, rural populations, and Hispanics were effective in improving patient care and patient knowledge. The authors found, however, that many people were not familiar with the technologies and also that many were concerned about security, both of which may limit the effectiveness of these technologies for underserved populations. Thus, although telemedicine can be an integral part of patient-centered care, it needs to be integrated into other parts of the health care information system along with EHRs to facilitate communication among and between cancer survivors and their health care teams. Historically, a major barrier to uptake of telemedicine has been pay- ment policies. In response to the COVID-19 pandemic, restrictions on billing for telehealth visits were loosened substantially (CMS, 2020c). This led to rapid increases in use of telemedicine across all types of practices, including oncology practices, which offset, in part, the large declines in office visits (Mehrotra et al., 2020). Many believe that expanded use of telemedicine will persist, and clinicians will need to identify the most effec- tive ways to incorporate it into routine practice. SETTINGS FOR CANCER CARE The health care system is undergoing dramatic changes in the organi- zation and delivery of care, and these changes are particularly evident in oncology care. Over the past several decades the delivery of many cancer treatments has moved from the inpatient hospital setting to ambulatory or outpatient settings. Where patients receive oncology care is determined by the treatments they receive and the settings in which their clinicians practice. Major surgi- cal procedures (e.g., resection of lung, colon/rectal, or pancreatic cancer) PREPUBLICATION COPY—Uncorrected Proofs

330 DIAGNOSING AND TREATING ADULT CANCERS are typically performed in the inpatient hospital setting, whereas some less invasive surgeries (e.g., mastectomy or lumpectomy for breast cancer) are increasingly performed in outpatient day-hospital settings (Case et al., 2001). Radiation therapy facilities are often located in a hospital, although some free-standing radiation centers also exist. Systemic therapy (e.g., che- motherapy, injected endocrine therapy, targeted therapy, immunotherapy) is typically provided in an outpatient infusion center, which can be located in a hospital-based setting or in an outpatient oncology office. Primary care, specialty care, and rehabilition therapy are typically provided in the community or in hospital-based clinics. Cancer patients with limited life expectancy may enroll in hospice care, which can be delivered at home or in a hospice facility when home hospice is not feasible. As cancer care moves from the inpatient to the outpatient setting, many supportive care services and personnel that are typically hospital based, such as social workers, rehabilitation specialists, nurse educators, mental health professionals, and clergy, may not be available in outpatient set- tings (IOM, 2006). Furthermore, the availability of such survivorship care services may be limited or nonexistent in smaller hospitals or independent cancer practices. This shift places the onus of supportive care on the patient and their caregivers rather than on the health care system. At the same time as care delivery has become more outpatient-fo- cused, there have been notable shifts in the types of practices providing oncology care. A growing number of oncology practices are owned by hospitals and health systems, and oncology specialists are leaving small independent practices for larger hospital- and system-owned practices at high rates (Alpert et al., 2017; Clough et al., 2017; Conti et al., 2016; Nikpay et al., 2018). About half of all oncology specialists (surgeons, radiation oncologists, medical oncologists) currently practice in large, integrated cancer care delivery systems such as academic medical centers, nonacademic health systems, and government medical centers (e.g., the U.S. Department of Veterans Affairs). Large hospitals and health-system- based oncology practices deliver multidisciplinary cancer care at a single location. There has been a clear movement toward comprehensive cancer care programs over the past decade, with the goal of putting the many cancer care clinicians and services in one location to make care simpler for survivors and to provide “one-stop” care. However, cancer care services being located in a single institition may not mean they are located in a single care location. Offices and facilities may be at a significant distance from one another, adding complexity for patients getting from one place to another and for clinicians, who may not be actually communicating and coordinating care. Examples of multidisciplinary practices and other types of practices providing oncology care include (IOM, 2006): PREPUBLICATION COPY—Uncorrected Proofs

SURVIVORSHIP OUTCOMES AND CARE DELIVERY 331 • National Cancer Institute (NCI)-designated cancer centers. NCI supports 71 major academic and research institutions through- out the United States (13 cancer centers, 51 comprehensive can- cer cancers, and 7 basic laboratory cancer centers) that provide “transdisciplinary, state-of-the-art research focused on developing new and better approaches to preventing, diagnosing, and treating cancer.” Approximately 250,000 people are diagnosed with cancer and even more patients are treated for cancer at these centers each year. Thousands of patients are enrolled in clinical trials at these cancer centers. Many of the centers also provide public education and outreach programs on cancer prevention and screening, with special attention to the needs of underserved populations (NCI, 2019). • Other academic medical centers. Academic medical centers are ter- tiary care hospitals that are organizationally and administratively integrated with a medical school (Joint Commission International, 2020). Such centers typically provide surgery, chemotherapy, and radiation therapy as well as primary and subspecialty care, mental health care, rehabilitation services, nutrition services, and social support services. • Community hospitals. Depending on their size, community hos- pitals often provide a wide range of cancer services, although the breadth of services may be less than offered by an NCI-designated cancer center or academic medical center. Most community hos- pitals provide surgery and chemotherapy as well as rehabilitation services, nutrition services, and social support services. • Non-hospital-based outpatient oncology practices. These practices may focus on a single specialty only (e.g., medical oncology), or they may be multi-specialty practices that include multiple types of physicians. Such multi-specialty practices may be primarily focused on oncology, including medical oncology, radiation oncology, and palliative care, or they may be large multi-specialty groups that care for conditions beyond cancer. They may range in size from a single physician to hundreds of physicians; some larger practices also have multiple practice locations. Many hospitals or practices that provide oncology care seek additional cancer-focused recognition which may identify their interest in providing high-quality and patient-centered oncology care. Such recognition may also identify a specific interest in cancer clinical trials. This recognition comes in a variety of forms and from a variety of programs: • NCI-designated comprehensive cancer centers, described above. PREPUBLICATION COPY—Uncorrected Proofs

332 DIAGNOSING AND TREATING ADULT CANCERS • NCI Community Oncology Research Program. This program is a national network of investigators, cancer care providers, and other institutions that bring cancer clinical trials and care delivery studies to people in their own communities. The NCI Community Oncol- ogy Research Program comprises 7 research bases and 46 com- munity sites, 14 of which are designated as minority/underserved community sites (NCI, n.d.). • American College of Surgeons’ Commission on Cancer. This is a consortium of organizations dedicated to improving survival and quality of life for cancer patients by promoting cancer prevention, research, education, and monitoring of comprehensive quality care (American College of Surgeons, 2020). The Commission on Cancer provides accreditation to more than 1,500 cancer programs of all types (including NCI-designated cancer centers, other academic centers, community hospitals and independent practices). About 70% of all newly diagnosed cancer patients are treated in Com- mission on Cancer–accredited cancer programs (American College of Surgeons, 2017), which must meet commission standards for high-quality, multidisciplinary cancer care and that typically in- clude services for psychology and mental health, pain management, and rehabilitation services (American College of Surgeons, 2020) and, more recently, cancer survivorship care. The current standards focus on the development of a survivorship program that includes multidisciplinary care for cancer patients who are treated with curative intent (Blaes et al., 2020). • American Society of Clinical Oncology Quality Oncology Practice Initiative. The high-quality oncology practice initiative is a quality- improvement program designed for outpatient-oncology practices which uses more than 150 evidence-based quality measures. On the basis of these measures medical practices receive individual performance scores as well as benchmarked scores aggregated from all participating practices (ASCO, 2020). Practices use these perfor- mance data to identify, develop, and implement quality-improve- ment initiatives with the goal of improving care and outcomes for their patients. Studies have shown that patients in rural areas have a higher prevalence of cancer-related risk factors than those in urban areas, are less likely to receive high-quality care, and have poorer outcomes (AHRQ, 2019; Hen- ley et al., 2020; Weaver et al., 2016). Rural cancer survivors also report a higher prevalence of poor health, health-related unemployment, smoking, and physical inactivity (Weaver et al., 2013). For patients diagnosed with cancer, 20% of individuals living in rural areas travel more than 60 miles PREPUBLICATION COPY—Uncorrected Proofs

SURVIVORSHIP OUTCOMES AND CARE DELIVERY 333 to see an oncologist, and the travel distances to cancer surgeons may be even greater (Hung et al., 2020). Compared with urban counties, rural counties have fewer oncology physicians per population, and the available physicians perform fewer procedures (Aboagye et al., 2014). Furthermore, the availability of physical rehabilitation services and psychological support may be limited. The trends described above underscore the challenges of providing high-quality cancer survivorship care and engaging individuals in care in a variety of clinical settings. As a result, such variation in the availability of cancer care makes it difficult to standardize such care across the many dif- ferent U.S. health care systems. As noted in Chapter 4, many guidelines for screening, diagnosing, and treating various cancers and for the delivery of comprehensive survivorship care have been developed, but the knowledge of and adherence to these guidelines is inconsistent among health care providers. Greater use of the guidelines and expanded survivorship care across care settings has the potential of improving function and reducing impairments for many cancer survivors. Strategies are needed to ensure that the clinicians caring for patients outside of specialized centers have the expertise and support mechanisms (e.g., telemedicine, teleconsulting) necessary for the timely diagnosis and high-quality treatment of cancer in order to yield the best long-term patient outcomes. EMERGING DIRECTIONS IN CANCER CARE DELIVERY In the prior sections the committee outlined the complexities of cancer survivorship care across the cancer care trajectory. In the section below several emerging trends are described that may enhance patient-centered, comprehensive, high-quality cancer care in ways that may affect cancer outcomes in the future. These trends include the use of new models to reor- ganize and restructure health care delivery and reshape cancer survivorship education for oncology, primary care, mental health and other health care providers. Payment and Delivery Models In addition to the organization of oncology care delivery into larger practices and systems, current efforts to improve the value of oncology care are also shaping how oncology care is financed and delivered. In 2015 the U.S. Department of Health and Human Services announced a goal of having 50% of Medicare payments tied to quality or value through alternative payment models by 2018 (Burwell, 2015), and the U.S. Centers for Medicare & Medicaid Services (CMS) and other payers have been testing such models. The initial efforts focused on accountable PREPUBLICATION COPY—Uncorrected Proofs

334 DIAGNOSING AND TREATING ADULT CANCERS care organizations, which are groups of doctors, hospitals, and other health care providers, that provide coordinated high-quality care to their patients (CMS, 2020a). In such an approach patients are assigned to an accountable care organization based on their primary care providers, but all care for those patients (including oncology care) is attributed to the organization. The use of accountable care organizations provides incen- tives for lowering costs but no direct incentives for improving oncology care delivery. In 2016, CMS launched the Oncology Care Model (OCM), a multi- payer alternative payment model that provides structured incentives for oncology physician practices to improve the quality and efficiency of cancer care delivery (Brooks et al., 2019; CMS, 2020b). As of January 2, 2020, there are 138 practices and 10 commercial payers participating in OCM (CMS, 2020b). OCM focuses on care delivery during 6-month episodes for fee-for-service Medicare beneficiaries receiving systemic therapy for their cancer. Participating practices must provide enhanced services to patients, including making available clinicians 24 hours per day, 7 days per week who can access patients medical records and patient navigation, provide care consistent with national guidelines, and follow a care plan that in- cludes information such as prognosis, goals of treatment, expected response to treatment, advance care plans, estimated costs of cancer treatment, and a survivorship plan (CMS, 2020b). To support these enhanced services, OCM practices may bill for monthly payments ($160/month per beneficiary). All services are reimbursed with traditional fee-for-service payments, but the practices are eligible for performance-based payments only if quality and cost goals are met. The evaluation of OCM is still under way; early find- ings suggest it produced modest reductions in total episode payments for high-risk cancers that were too small to cover the costs of the monthly pay- ments, without providing improvements in patients’ experiences (Brooks et al., 2019). Concurrent with the development of alternative payment models for oncology care, there has been an effort to define and designate practices as “oncology medical homes.” This effort developed from the patient-centered medical home model in primary care (ACP, 2020; NCQA, 2020b; Reynolds et al., 2015). The patient-centered medical home is a care-delivery model in which patients’ treatments are coordinated through their primary care physicians to ensure that they receive the care they need when they need it and in a manner that they can understand. Oncology medical homes similarly focus on the delivery of high-quality, patient-centered care for on- cology patients (NCQA, 2020a). These models emphasize team-based care by clinicians from a variety of backgrounds and specialties, including—but not limited to—primary care physicians, urologists, gynecologists, patholo- gists, pharmacists, genetic counselors, mental health specialists, pain and PREPUBLICATION COPY—Uncorrected Proofs

SURVIVORSHIP OUTCOMES AND CARE DELIVERY 335 palliative care specialists, and advanced practice providers (ASCO, 2016). Evidence to date has suggested that financial savings have ben realized through reductions in emergency room visits and hospitalizations (Colligan et al., 2017; Kuntz et al., 2014). More research is needed to understand the impact of alternative payment and care delivery models on care and outcomes, including survival and long-term physical and mental health function (Aviki et al., 2018; Nejati et al., 2019). Professional Education and Training There is value to having both specialty-focused and broad-based train- ing in order to improve the likelihood that a patient living with and beyond cancer will be able to access health care professionals who will understand his or her unique needs (Kline et al., 2018). Toward this goal the American Society of Clinical Oncology has developed a set of core competencies for physicians and allied health professional for providing high-quality health care to cancer survivors that focus on survivorship, surveillance for new primary and recurrent cancers, long-term and late-onset effects, health promotion and disease prevention, psychosocial care, communication and coordination of care, and the unique needs of survivors of by age groups (Shapiro et al., 2016). For physicians this training in cancer survivorship care may begin in medical school, with the proposed (but not yet realized) certification or fellowship programs to acknowledge these focused efforts (Kline et al., 2018). There is also a need for additional training of other health care providers who may be needed to address the long-term adverse functional effects of cancer and its treatments, including advanced practice providers, nurses, physiatrists, physical therapists, and exercise profession- als, all of whom may require specialty preparation to address the needs of cancer survivors. The American Physical Therapy Association has recently approved a specialty area for oncology, recognizing the unique skill set and knowledge required for providing optimal rehabilitation to patients living with and beyond cancer. The American College of Sports Medicine has had a specialty certification for cancer exercise trainers for a decade. There also has been a call for further development, dissemination, and implementation of clinical practice guidelines that recognize the challenges cancer survivors face and to guide their care (Alfano et al., 2019; Shapiro et al., 2016), and a recognition that current payment incentives are inconsistent with optimal care for the complexities experienced by survivors. In addition, there has been a call for a personalized or risk-stratified approach to cancer survivorship care (Kline et al., 2018; Mayer and Al- fano, 2019). In this approach patients with more common cancers (e.g., early-stage colon cancer) who are treated with routine regimens and are at low risk for recurrences, late-onset and long-term effects, may be readily PREPUBLICATION COPY—Uncorrected Proofs

336 DIAGNOSING AND TREATING ADULT CANCERS transitioned from oncology to primary care. Conversely, patients with more unusual cancers who are treated with complicated regimens and are at high risk for late-onset and long-term effects (e.g., patients receiv- ing stem cell transplant for leukemia) may be best cared for in specialized cancer survivorship programs. As most survivors do not appear to require such specialized care, general awareness about cancer survivorship would be helpful for all primary care providers and other specialists. However, survivors who require specialized care need to be identified and referred to appropriate health care specialists who have the knowledge and skills and experience to care for them. Methods are needed to assess cancer survivors for potential risk factors for long-term outcomes and to improve referral to health care professionals with training in cancer survivorship in order to maximize function and the ability to return to work after cancer treatment. FINDINGS AND CONCLUSIONS Findings 1. The cancer care trajectory is not linear and includes treatment, monitoring for response to treatment, surveillance for recurrent and new cancers, and ongoing survivorship care which includes the management of chronic diseases and of the late-onset and long- term effects of cancer treatment. 2. Palliative/supportive care and rehabilitation can improve func- tion and quality of life for patients throughout the cancer care trajectory. 3. The optimal cancer care team is patient- and caregiver-focused. The cancer care team includes a variety of clinicians, including oncology specialists of various disciplines, primary care provid- ers and subspecialists, palliative care clinicians, advanced practice providers, rehabilitation specialists, nurses, pharmacists, mental health professionals, nutritionists, social workers, and spiritual counselors. 4. The use of electronic health records has expanded since the 2009 Health Information Technology for Economics and Clinical Health Act provided incentives for adoption of electronic health records; however, patient-reported outcomes such as pain and mental dis- tress are not included in electronic health records on a regular basis. 5. The delivery of cancer treatments is generally in the ambulatory or outpatient setting and in the home rather than the inpatient setting. PREPUBLICATION COPY—Uncorrected Proofs

SURVIVORSHIP OUTCOMES AND CARE DELIVERY 337 6. The delivery of survivorship care services may require referrals to service providers who may not be co-located. 7. The use of telemedicine has the potential to improve cancer survi- vorship care, including supportive care, particularly for patients for whom travel is difficult and local resources may not be available. 8. Payers are experimenting with models for payment and delivery that incentivize high-quality, coordinated cancer care; however, the effects of such models on the long-term health status of cancer survivors are not yet known. 9. Efforts are under way to expand training opportunities for clini- cians to ensure that the long-term needs of cancer survivors are met during and after treatment. These efforts include the development and dissemination of clinical practice guidelines and certification programs for some clinicians. 10. Methods are needed to assess cancer survivors for potential risk factors for long-term outcomes and to improve referral to health care professionals with training in cancer survivorship in order to maximize patients’ function and the ability to return to work after cancer treatment. Conclusions 1. Survivorship care is complex and requires coordination and com- munication among the patient, caregivers, and all members of the care team. Enabling and supporting patient self-management is a critical component of survivorship care. 2. Challenges to providing optimal survivorship care include the availability and education of clinicians, as well as electronic health records that do not adequately collect survivorship information. REFERENCES Aboagye, J.K., H.E. Kaiser, and A.J. Hayanga. 2014. Rural–urban differences in access to specialist providers of colorectal cancer care in the United States: A physician workforce issue. JAMA Surgery 149(6):537–543. Ackerman, M.J., R. Filart, L.P. Burgess, I. Lee, and R.K. Poropatich. 2010. Developing next- generation telehealth tools and technologies: Patients, systems, and data perspectives. Telemedicine Journal and e-Health 16(1):93–95. ACP (American College of Physicians). 2020. What is the patient-centered medical home? https://www.acponline.org/practice-resources/business-resources/payment/delivery-and- payment-models/patient-centered-medical-home/understanding-the-patient-centered- medical-home/what-is-the-patient-centered-medical-home (accessed April 28, 2020). Adler-Milstein, J., A.J. Holmgren, P. Kralovec, C. Worzala, T. Searcy, and V. Patel. 2017. Elec- tronic health record adoption in U.S. hospitals: The emergence of a digital “advanced use” divide. Journal of the American Medicine Information Association 24(6):1142–1148. PREPUBLICATION COPY—Uncorrected Proofs

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Cancer is the second leading cause of death among adults in the United States after heart disease. However, improvements in cancer treatment and earlier detection are leading to growing numbers of cancer survivors. As the number of cancer survivors grows, there is increased interest in how cancer and its treatments may affect a person's ability to work, whether the person has maintained employment throughout the treatment or is returning to work at a previous, current, or new place of employment. Cancer-related impairments and resulting functional limitations may or may not lead to disability as defined by the U.S. Social Security Administration (SSA), however, adults surviving cancer who are unable to work because of cancer-related impairments and functional limitations may apply for disability benefits from SSA.

At the request of SSA, Diagnosing and Treating Adult Cancers and Associated Impairments provides background information on breast cancer, lung cancer, and selected other cancers to assist SSA in its review of the listing of impairments for disability assessments. This report addresses several specific topics, including determining the latest standards of care as well as new technologies for understanding disease processes, treatment modalities, and the effect of cancer on a person's health and functioning, in order to inform SSA's evaluation of disability claims for adults with cancer.

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