4
Delivering Cancer Survivorship Care

Cancer survivorship is a distinct phase of the cancer trajectory, with many opportunities to intervene to improve care. The current system for delivering care to the growing number of cancer survivors is inadequate. This chapter begins with a description of the attributes of an ideal follow-up system that would meet the needs of individuals surviving their cancer. Next, the gap between this ideal system and the current health care delivery system is illustrated in terms of problems faced by survivors in obtaining care and by providers in delivering care. Barriers that patients face in receiving appropriate care include a fragmented and poorly coordinated health care system, an absence of a locus of responsibility for follow-up care, and a lack of guidance on how cancer survivors can maximize their own health outcomes. Barriers that health care providers face in delivering care include not having necessary tools to provide consistent quality care, such as evidence-based clinical practice guidelines. Providers also lack delivery system supports such as information technology that would allow them to overcome some of the obstacles posed by the fragmented nature of cancer care in the United States. The chapter next reviews alternative models for delivering survivorship care. Survivorship clinics are being developed at a few cancer centers to meet the long-term needs of cancer survivors, but other promising models for delivering survivorship care are emerging and are examined. A description of the U.S. cancer care infrastructure is then described, highlighting existing programs to meet the needs of cancer survivors. Finally, the chapter puts forward steps that could be taken to implement the envisioned cancer survivorship system of care. Issues related to provider education and training are covered in Chapter 5. Overriding prob-



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From Cancer Patient to Cancer Survivor: Lost in Transition 4 Delivering Cancer Survivorship Care Cancer survivorship is a distinct phase of the cancer trajectory, with many opportunities to intervene to improve care. The current system for delivering care to the growing number of cancer survivors is inadequate. This chapter begins with a description of the attributes of an ideal follow-up system that would meet the needs of individuals surviving their cancer. Next, the gap between this ideal system and the current health care delivery system is illustrated in terms of problems faced by survivors in obtaining care and by providers in delivering care. Barriers that patients face in receiving appropriate care include a fragmented and poorly coordinated health care system, an absence of a locus of responsibility for follow-up care, and a lack of guidance on how cancer survivors can maximize their own health outcomes. Barriers that health care providers face in delivering care include not having necessary tools to provide consistent quality care, such as evidence-based clinical practice guidelines. Providers also lack delivery system supports such as information technology that would allow them to overcome some of the obstacles posed by the fragmented nature of cancer care in the United States. The chapter next reviews alternative models for delivering survivorship care. Survivorship clinics are being developed at a few cancer centers to meet the long-term needs of cancer survivors, but other promising models for delivering survivorship care are emerging and are examined. A description of the U.S. cancer care infrastructure is then described, highlighting existing programs to meet the needs of cancer survivors. Finally, the chapter puts forward steps that could be taken to implement the envisioned cancer survivorship system of care. Issues related to provider education and training are covered in Chapter 5. Overriding prob-

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From Cancer Patient to Cancer Survivor: Lost in Transition lems in accessing care due to a lack of health insurance coverage and inadequate insurance coverage are described in Chapter 6. OPTIMAL CANCER SURVIVORSHIP CARE For years cancer survivors have voiced concerns about access to appropriate services following their primary treatment. A decade ago, the National Coalition for Cancer Survivorship promulgated 12 principles that it believed were imperatives for quality cancer care (NCCS, 1996). Two of the principles relate to the delivery of care to cancer survivors: “People with histories of cancer have the right to continued medical follow-up with basic standards of care that include the specific needs of long-term survivors.” (Principle 6) “Long-term survivors should have access to specialized follow-up clinics that focus on health promotion, disease prevention, rehabilitation, and identification of physiologic and psychological problems. Communication with the primary care physician must be maintained.” (Principle 7) The committee agreed with the underlying premise of these principles—that an organized system of care is needed to ensure the provision of survivorship care. In its deliberations, the committee sought a clear definition of the essential components of survivorship care and examples of delivery models that could be adopted throughout the nation in communities with varying characteristics and needs. The committee, following its review of the post-treatment clinical and psychosocial needs of cancer survivors, concluded that survivorship care represents a distinct phase of the cancer care trajectory. In its effort to better define this phase of care, the committee addressed key questions concerning the content of survivorship care, its recipients, and attributes of a system of care for this population. What Are the Essential Components of Survivorship Care? Survivorship care includes four components: (1) prevention and detection of new cancers and recurrent cancer; (2) surveillance for cancer spread, recurrence, or second cancers; (3) intervention for consequences of cancer and its treatment (e.g., medical problems such as lymphedema and sexual dysfunction; symptoms, including pain and fatigue; psychological distress experienced by cancer survivors and their caregivers; and concerns related to employment and insurance); and (4) coordination between specialists and primary care providers to ensure that all of the survivor’s health needs are met (e.g., health promotion, immunizations, screening for both cancer and noncancerous conditions, and the care of concurrent conditions).

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From Cancer Patient to Cancer Survivor: Lost in Transition Essential to survivorship care is a patient-centered approach, including responsiveness to patients’ needs, effective communication and information sharing, encouragement of the adoption of healthy lifestyles, and assistance in accessing community support services. Survivorship care has a focus on prevention—identifying treatable cancer recurrences, second cancers, and late effects; ensuring access to effective interventions; and helping patients to improve their quality of life. Who Should Receive Survivorship Care? Every individual should receive survivorship care following their treatment. The need for specific services will vary from survivor to survivor because of the heterogeneity of cancer and late effects. Survivors of early-stage cancer whose treatment was limited to surgery may require minimal follow-up care. In contrast, survivors with more advanced disease treated with combinations of surgery, chemotherapy, radiation, and hormone therapies may need long-term rehabilitative and supportive care. Some individuals treated for a predisposition to cancer (e.g., those who have genetic mutations, such as BRCA mutations) may also benefit from survivorship care. When Does Survivorship Care Start and End? An organized plan for survivorship care should be developed by the time primary treatment ends.1 Discussions of long-term effects of cancer and its treatment often begin at the time when treatment decisions are made. Later in the course of care, discussion of a survivorship care plan can provide hope and practical guidance. The transition from primary treatment into survivorship care is not always clear cut because some individuals require ongoing treatment such as adjuvant therapy. The committee viewed this period of adjuvant therapy as within the spectrum of survivorship care. Survivorship care lasts until recurrence, a second cancer, or death. Individuals who experience a recurrence or second cancer may reenter the acute phase of care for a time and then resume survivorship care. Individuals with chronic or intermittent disease may receive ongoing treatment for their disease, but benefit from survivorship care as they live with their disease (Figure 4-1). These individuals are generally under the long-term care of an oncology provider who can help ensure that survivorship needs are met. Some individuals who cease treatment prematurely may not benefit from a care plan if they are not formally discharged from care. 1   Primary treatment is the first course of therapy provided with the intention to cure cancer.

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From Cancer Patient to Cancer Survivor: Lost in Transition FIGURE 4-1 Cancer care trajectory. NOTE: Palliative care is provided throughout the cancer care trajectory. Who Should Provide Survivorship Care? Survivorship care can be provided by either specialists or primary care providers. These providers can come from various care backgrounds—physicians, nurses, psychologists, and social workers—but optimally a designated individual is responsible for coordinating survivorship care, and care is viewed as a shared responsibility. Cancer survivors should be informed care partners, but providers within the health care system must take primary responsibility for coordinating care. How Should Survivorship Care Be Provided? Different models can be used to deliver optimal cancer survivorship care (see discussion below). Information technology, electronic medical records, and other health care delivery support systems can facilitate the delivery of integrated, coordinated, and multidisciplinary survivorship care. Survivorship care should embody rules set forth by the Institute of Medicine’s (IOM’s) Committee on Health Care Quality in America in its report Crossing the Quality Chasm (Box 4-1). Receipt of optimal survivorship care depends on a patient-centered

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From Cancer Patient to Cancer Survivor: Lost in Transition BOX 4-1 Recommendation from the Institute of Medicine Committee on Health Care Quality in America Recommendation: Private and public purchasers, health care organizations, clinicians, and patients should work together to redesign health care processes in accordance with the following rules: Care based on continuous healing relationships. Patients should receive care whenever they need it and in many forms, not just face-to-face visits. This rule implies that the health care system should be responsive at all times (24 hours a day, every day) and that access to care should be provided over the Internet, by telephone, and by other means in addition to face-to-face visits. Customization based on patient needs and values. The system of care should be designed to meet the most common types of needs, but have the capability to respond to individual patient choices and preferences. The patient as the source of control. Patients should be given the necessary information and the opportunity to exercise the degree of control they choose over health care decisions that affect them. The health system should be able to accommodate differences in patient preferences and encourage shared decision making. Shared knowledge and the free flow of information. Patients should have unfettered access to their own medical information and to clinical knowledge. Clinicians and patients should communicate effectively and share information. Evidence-based decision making. Patients should receive care based on the best available scientific knowledge. Care should not vary illogically from clinician to clinician or from place to place. Safety as a system property. Patients should be safe from injury caused by the care system. Reducing risk and ensuring safety require greater attention to systems that help prevent and mitigate errors. The need for transparency. The health care system should make information available to patients and their families that allows them to make informed decisions when selecting a health plan, hospital, or clinical practice, or when choosing among alternative treatments. This should include information describing the system’s performance on safety, evidence-based practice, and patient satisfaction. Anticipation of needs. The health system should anticipate patient needs, rather than simply reacting to events. Continuous decrease in waste. The health system should not waste resources or patient time. Cooperation among clinicians. Clinicians and institutions should actively collaborate and communicate to ensure an appropriate exchange of information and coordination of care. SOURCE: IOM (2001).

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From Cancer Patient to Cancer Survivor: Lost in Transition approach in which care is structured around the needs and preferences of patients themselves (Berry et al., 2003). A call for such an approach has been made by physician-researchers William Tierney and Elizabeth McKinley in their description of their cancer experience from the patient’s perspective (Tierney and McKinley, 2002): Providers must try to understand the impact of cancer on their patients’ lives and the lives of their patients’ caregivers. They should focus on both the negative and positive effects of cancer and its treatment, and be as energetic and considerate in treating the cancer patient (and hopefully, survivor) as they are in treating the cancer itself. BARRIERS TO OPTIMAL CANCER SURVIVORSHIP CARE Cancer survivors now generally receive some kind of follow-up, either from their cancer care specialist or primary care physician, but the focus of care has usually been on surveillance for recurrence and second cancers, not on the other key elements of care identified above. What barriers impede the delivery of optimal survivorship care? As this phase of care has only recently gained wide public attention, there is relatively little experience and research on how to deliver comprehensive and multidisciplinary survivorship care. This section of the chapter reviews significant barriers that both cancer survivors and their caregivers face in achieving satisfactory survivorship care. Barriers Facing Cancer Survivors Fragmented Delivery System Individuals with chronic conditions face many obstacles in obtaining medical care that meets their needs for effective clinical management, psychological support, and information (Wagner et al., 2001). Cancer survivors, like other individuals with chronic conditions, face a common set of challenges—dealing with symptoms, disability, emotional upheaval, complex medication regimens, difficult lifestyle adjustments, and the need to obtain helpful medical care. While in treatment, cancer patients often see multiple specialists—surgeons, medical oncologists, and radiation oncologists—in addition to their primary care provider. Assuring coordinated, multidisciplinary care for primary treatment can be difficult and may affect access to subsequent survivorship care. It is generally the primary treatment specialist who informs survivors of their need for long-term follow-up, but continuity of that care is not always assured. A focus on continuity of care is central to quality of care throughout the cancer care

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From Cancer Patient to Cancer Survivor: Lost in Transition trajectory, including survivorship. The concept of continuity of care in oncology has been defined as: The systematic assurance of uninterrupted, integrated medical and psychosocial care of the patient, in accord with the patient’s wishes, from assessment of symptoms in the prediagnostic period, throughout the phase of active treatment, and for the duration of posttreatment monitoring and/or palliative care. (Lauria, 1991) When the systems responsible for coordinating individuals’ cancer care have been evaluated, they have often come up short. A qualitative study of mechanisms present within several New York hospitals to coordinate care for women with early breast cancer found that no site had the ability to systematically track care provided by multiple specialists (Bickell and Young, 2001). Mechanisms that hospitals relied on included tracking of referrals, patient support such as education and navigator programs, regularly scheduled multidisciplinary meetings, feedback of performance data, use of protocols, computerized systems, and a single physical location for care. One consequence of poorly coordinated care is poor-quality care. Cancer survivors may not receive necessary noncancer care if their cancer diagnosis shifts attention away from care that is routine but necessary. Colorectal cancer survivors in one study were less likely than controls to receive appropriate follow-up for heart failure, necessary diabetic care, and recommended preventive services (Earle and Neville, 2004). Having both primary care physicians and oncologists involved in follow-up appeared to ameliorate this effect significantly, suggesting that a collaborative approach to follow-up is needed. This study focused on the care experience of Medicare beneficiaries who had survived 5 years past their diagnosis of colorectal cancer. In contrast to the findings in this study, breast cancer survivors received more preventive services (i.e., influenza vaccination, blood lipid testing, cervical and colon cancer screening, bone densitometry for osteoporosis) than controls in a similar study of Medicare beneficiaries (Earle et al., 2003). Breast cancer survivors who were followed by oncology specialists were more likely to receive mammograms; those who were followed by primary care physicians were more likely to receive all other noncancer-related preventive services; and those who saw both types of practitioners received more of both types of services. Both studies point to the importance of care that is coordinated and involves both primary and specialty providers. Evidence from studies of surveillance practices in the United States suggests that follow-up care is not being provided as guidelines recommend (Johnson and Virgo, 1997) (see Appendix 4A for a summary of relevant studies). Rates of follow-up are not uniformly high for patients with a

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From Cancer Patient to Cancer Survivor: Lost in Transition history of breast cancer with annual mammography (Hillner et al., 1997; Andersen and Urban, 1998; Schapira et al., 2000; Lash and Silliman, 2001; Geller et al., 2003), for patients with a history of colorectal cancer with colorectal examinations (Cooper et al., 1999, 2000; Elston Lafata et al., 2001, 2005; Knopf et al., 2001; Ellison et al., 2003; Rulyak et al., 2004), and for patients with a history of bladder cancer with cystoscopy (Schrag et al., 2003). When examined, racial/ethnic and income differences usually account for significant variation in surveillance practices. The use of testing for metastatic disease that is not recommneded in guidelines has been found to be commonplace among cancer survivors (Elston Lafata et al., 2005). Adherence to adjuvant tamoxifen therapy among women with breast cancer is not uniformly high, with some studies finding nearly one-fourth of patients at risk for inadequate clinical response because of poor adherence (Demissie et al., 2001; Partridge et al., 2003; Fink et al., 2004). Evidence also suggests that the psychosocial needs of cancer patients are not being addressed. For example, oncologists often underdiagnose depression and fail to refer patients to mental health services (Passik et al., 1998; Fallowfield et al., 2001; Eakin and Strycker, 2001; Ell et al., 2005). Reports of unmet mental health needs because of cost have been reported to be significantly higher among cancer survivors relative to those without such a history (Hewitt and Rowland, 2002). Optimal survivorship care is characterized by an organized plan for follow-up that is shared with patients so they can take responsibility for their care. There has been little research in the United States on the extent to which such plans are developed or communicated to patients. One Canadian study found that more than a third of cancer survivors surveyed after completion of treatment were not sure which physician was in charge of their cancer follow-up care (Miedema et al., 2003). This study relied on an unrepresentative sample of cancer survivors and so may not be generalizable to the broader population. Relatively little is known of cancer survivors’ desires and perspectives regarding follow-up. Interviews conducted in England with breast cancer survivors on their views of routine follow-up indicated that women wanted, but were not receiving, continuity of care and an unrushed consultation (Adewuyi-Dalton et al., 1998). A management model has emerged to guide the redesign of delivery systems and to improve care for individuals with chronic conditions. Six elements of the model are relevant to cancer survivorship care (Improving Chronic Illness Care, 2004): Mobilize community resources to meet needs of patients. Create a culture, organization, and mechanisms that promote safe, high-quality care.

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From Cancer Patient to Cancer Survivor: Lost in Transition Empower and prepare patients to manage their health and health care. Assure the delivery of effective, efficient clinical care and self-management support. Promote clinical care that is consistent with scientific evidence and patient preferences. Organize patient and population data to facilitate efficient and effective care. The chronic disease model has been implemented in primary care practices to improve care for individuals with diabetes, asthma, and congestive heart failure and has had some success in terms of improved outcome measures and reduced health care costs (Bodenheimer et al., 2002a,b). The Centers for Medicare and Medicaid Services (CMS) has supported several demonstration programs to improve care coordination and disease management in Medicare (MedPAC, 2004b). The Medicare Coordinated Care Demonstration, for example, is testing models of coordinated care to improve quality of services and manage Medicare expenditures at 15 sites, with 1 site focused on cancer care (CMS, 2004). The cancer care coordination project provides Medicare beneficiaries in South Florida with an oncology nurse advocate to help them understand their disease and better manage the side effects and symptoms of cancer and its treatment (Quality Oncology Inc., 2003). Improvements in cancer care coordination could also come from initiatives aimed at improving care for the chronically ill. For example, the Academic Chronic Care Collaborative, an initiative of the American Association of Medical Colleges Institute for Improving Clinical Care, has been launched in partnership with the Robert Wood Johnson Foundation’s national chronic illness care program. The collaborative involves 22 academic medical centers that will undergo extensive redesign of their chronic care strategies (AAMC, 2005). The complexities of the health care system can be particularly daunting for those whose language is not English, who are uninsured, who reside in a rural area, or who have other difficulties in accessing care. One mechanism that is being evaluated to reduce cancer health disparities is “Patient Navigation” (Freeman and Clanton, 2004). A patient navigator is a trained patient advocate and guide who helps individuals and their families navigate their way through the maze of doctors’ offices, clinics, hospitals, outpatient centers, insurance and payment systems, patient support organizations, and other components of the health care system (NCI, 2004). Navigation services include: facilitating communication and information exchange for patients; coordinating care among medical service providers; and arranging for financial support, transportation, or child care services.

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From Cancer Patient to Cancer Survivor: Lost in Transition Lack of Awareness of the Late Effects of Cancer and Its Treatment A prerequisite to obtaining appropriate cancer follow-up care is an awareness of one’s increased risk and knowledge of what should be done to reduce risk or ameliorate adverse outcomes. Late effects that are known to be associated with cancer treatments may be discussed in the context of making treatment decisions and obtaining informed consent. Given the stressful nature of this phase of care, cancer patients may have difficulty retaining the information. Patients do not routinely receive a summary of their treatments or possible late effects. Cancer survivors are beginning to be informed about what to expect after treatment through the efforts of patient advocacy organizations. For example, the American Cancer Society (ACS) has provided information on “What Happens After Treatment” for most cancer types (ACS, 2005a) and the Lance Armstrong Foundation has provided a guide to help survivors summarize their medical treatment and plan for follow-up care (LAF, 2004a). A few studies have assessed adult cancer survivors’ awareness of their increased risk and need for follow-up: Female adult survivors of Hodgkin’s disease treated at a young age with mantle irradiation are at high risk for subsequent cancer, but only 47 percent reported having had a mammogram in the past 2 years (Diller et al., 2002). As many as 40 percent of women were unaware of their increased risk. Breast cancer survivors report knowing little about lymphedema before developing it, and physicians report not routinely counseling women or providing written information on lymphedema prevention to their patients with breast cancer (Paskett and Stark, 2000). Only about half of men and women with cancer who are of childbearing age receive timely information from their health care providers about their risk of infertility and options to preserve or restore fertility (Canada and Schover, 2005). Breast cancer survivors often do not recall discussing the reproductive health impact of their treatment, and many report that their concerns are not adequately addressed (Partridge et al., 2004; Duffy et al., 2005). Relatively few (22 percent) survivors of colorectal cancer could identify risk indicators for recurrence, but most (64 percent) agreed that they would like to be told what to look for (Papagrigoriadis and Heyman, 2003). More is known about the awareness of late effects among survivors of childhood cancer. As part of the Childhood Cancer Survivorship Study (CCSS), members of a large cohort of 5-year childhood cancer survivors have been surveyed to learn more about their health status, health care

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From Cancer Patient to Cancer Survivor: Lost in Transition behavior, attitudes, and perceptions. When 635 members of this cohort were asked if past therapies could cause a serious health problem with the passage of time, 35 percent responded affirmatively, 46 percent responded negatively, and 19 percent did not know (Kadan-Lottick et al., 2002). Only 15 percent reported that they had ever received a written statement of their diagnoses and treatments to keep as a reference in the future. To learn more about the experiences of survivors of adult cancer, a large cohort study, similar in design to the CCSS, could be initiated (see details of its design in Chapter 7). Barriers to Communication Some research suggests there is a disjuncture between patients’ expectations and physicians’ perceptions of cancer follow-up. Most women being followed after breast cancer treatment want to be asked about nutrition, pain, and emotional/family problems, but relatively few want to be asked about sexual problems, according to an American study of patients’ expectations of follow-up visits and perceptions of the value of follow-up tests and examinations. Women in this study overestimated the value of laboratory and imaging studies and underestimated the value of the medical history and physical examination (Muss et al., 1991). Studies conducted among European cancer survivors indicate that information on long-term effects of treatment and prognosis, prevention of cancer, and hereditary factors was desired, as was access to cancer expertise, diagnostic tests, and specialist facilities (Adewuyi-Dalton et al., 1998; de Bock et al., 2004). Anticipation of a follow-up visit can engender anxiety, and providers must balance providing realistic information with remaining hopeful and reassuring. In one British study of asymptomatic and disease-free survivors’ views on follow-up of colorectal cancer, anticipation of the follow-up appointment caused anxiety (35 percent), sleep problems (27 percent), and decreased appetite (8 percent) (Papagrigoriadis and Heyman, 2003). Most patients (78 percent), however, felt reassured and optimistic for the future after receiving results of tests performed at their visit. This finding that follow-up clinic visits are generally perceived as reassuring has been found in other research (Kiebert et al., 1993; GIVIO, 1994; Stiggelbout et al., 1997). When cancer survivors seek follow-up care, all components of survivorship care may not be addressed. In a study of follow-up care for women with breast cancer in England, for example, visits were focused on detection of recurrent disease by clinical examination, but little attention was paid to patient education and psychosocial needs (Beaver and Luker, 2004). There is anecdotal evidence for this same pattern of care in the United States. One recent unscientific poll of cancer survivors found that nearly half (49 per-

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