From Cancer Patient to Cancer Survivor: Lost in Transition (2006)

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-

lems in accessing care due to a lack of health insurance coverage and inadequate insurance coverage are described in Chapter 6.

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.

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).

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.

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.

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.

FIGURE 4-1 Cancer care trajectory.

NOTE: Palliative care is provided throughout the cancer care trajectory.

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.

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

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):

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.

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

trajectory, including survivorship. The concept of continuity of care in oncology has been defined as:

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

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):

1. Mobilize community resources to meet needs of patients.

2. Create a culture, organization, and mechanisms that promote safe, high-quality care.

3. Empower and prepare patients to manage their health and health care.

4. Assure the delivery of effective, efficient clinical care and self-management support.

5. Promote clinical care that is consistent with scientific evidence and patient preferences.

6. 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.

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

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).

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-

cent) felt their psychosocial needs were not being met by the health care system (LAF, 2004b). Cancer survivors expressed dissatisfaction with their oncologist’s provision of support in dealing with the secondary aspects of cancer, such as depression, fear of recurrence, chronic pain, ongoing health challenges, infertility, sexual dysfunction, difficulty with relationships, and financial or job insecurity.

As part of a major effort to gauge cancer patients’ experience with cancer within the British National Health System, a nationwide survey was conducted in 2000 (Airey et al., 2002).² Dissatisfaction with some aspects of post-treatment care mirror those identified in the United States. Nearly one in five (19 percent) survivors reported that doctors and nurses did not spend enough time, or spent no time at all, telling them what would happen when they left the hospital after their first treatment; 26 percent reported not being given written or printed information about what they should or shouldn’t do following their discharge; and 36 percent reported not being told about a support or self-help group. Results of surveys were made available to each group of cancer care providers so they could compare their results with other providers and make efforts to improve care.

Relatively little is known about the content of follow-up care provided in the United States. According to national surveys of ambulatory care, relatively little counseling takes place during cancer-related visits.³ Among cancer-related visits made by individuals who use tobacco, for example, physicians report smoking cessation counseling or referral during only 18 percent of visits (Table 4-1). Guidelines for smoking cessation recommend routinely counseling individuals who smoke (USPSTF, 2003). These estimates are for all cancer-related visits and would include visits for both primary treatment and survivorship care.⁴

Barriers to communication are compounded for the 90 million American adults who lack the needed literacy skills to effectively use the U.S. health system (IOM, 2004a). The problem of limited health literacy is often greater among older adults, people with limited education, and those with limited English proficiency. For individuals whose native language is not

English, issues of health literacy are compounded by issues of basic communication and the specialized vocabulary used to convey health information. In addition, communication barriers may arise that relate to sociocultural differences between survivors and their health care providers (IOM, 2002). These differences may relate to commonly held attitudes, norms, beliefs, and practices for those with certain life experiences (e.g., poverty, membership in a racial or ethnic minority group) or environments (e.g., communities with poor access to health care services).

In summary, there is a limited amount of research regarding cancer survivors’ expectations and experience with their care following primary treatment. Available evidence points to systemic problems in health care delivery that in some cases lead to poor-quality care, such as underuse of post-treatment screening for cancer. When evaluated, problems in survivorship care appear to stem from a lack of coordination between primary care providers and cancer care providers. There is anecdotal evidence of general dissatisfaction with post-treatment care, with cancer survivors reporting too little attention being paid to their many psychosocial concerns, such as depression, fear of recurrence, sexual dysfunction, and financial issues. Why the expectations of cancer survivors are not being met is not clear, but factors that could be at play include a lack of recognition of the value of these aspects of care, the presence of communication barriers, and a lack of delineation of responsibility on the part of providers to address these con-

cerns. There is little information regarding the difficulties survivors may have in communication that are related to low literacy levels and to sociocultural factors.

Health care providers face many of the same problems as cancer survivors in dealing with a fragmented system of care. Providers are also hampered in their provision of survivorship care by a lack of training on survivorship and an absence of agreed-upon standards of survivorship care. Such standards are essential to ensuring the delivery of the full complement of services that cancer survivors may need (see discussion of guidelines in Chapter 3). Furthermore, without agreed-upon practice guidelines for care, reimbursement for care can be problematic. Communication issues are also a major challenge to those providing and coordinating survivorship care because individuals with cancer often have multiple providers at different sites of care. Compounding these problems are concerns about the capacity of the primary care and oncology care systems to accommodate the follow-up needs of the large and growing population of cancer survivors.

The fragmented nature of the U.S. health care system hampers the delivery of coordinated survivorship care. Providing such care is a challenge because cancer care is delivered by multiple providers over extended periods of time and through multiple phases of illness. These providers often wish to provide coordinated care, but usually do not work within systems of care that facilitate its delivery. The goal of care coordination is to establish and support a continuous healing relationship, enabled by an integrated clinical environment and characterized by the proactive delivery of evidence-based care and follow-up (IOM, 2001). Clinical integration is further defined as the extent to which patient care services are coordinated across people, functions, activities, and sites over time so as to maximize the value of services delivered to patients. Coordination encompasses a set of practitioner behaviors and information systems intended to bring together health services, patient needs, and streams of information to facilitate the delivery of quality care. Such coordination can be facilitated by procedures for engaging community resources, including social and public health services.

Key strategies that enhance care coordination are often lacking. These include: providing educational supports; instituting patient-centered health records supported by modern information technology; ensuring accountability and defining roles for providers of care; and aligning financial incen-

tives to ensure the delivery of coordinated care (IOM, 2001). The extent to which these strategies operate for providers of survivorship care are described in the following sections.

Often physicians, nurses, and other providers of cancer survivorship care have not had optimal relevant formal education, training, and continuing medical education. The status of education and training for physicians, nurses, social workers, and other providers of survivorship care is detailed in Chapter 5. The recognition of cancer survivorship as a phase of care associated with an extensive set of management issues is relatively new. Educational and training opportunities are likely to increase as a consensus is reached regarding the content of such care and its delivery, but for now the notion of cancer survivorship as a distinct clinical entity is not prevalent in the provider community. In addition to their lack to education and training regarding cancer survivorship, health care providers report being ill-equipped and -trained to manage the care of patients with chronic conditions. According to one survey conducted in 2000 and 2001, practicing physicians reported that their training did not adequately prepare them to coordinate in-home and community services (66 percent), educate patients with chronic conditions (66 percent), or manage the psychological and social aspects of chronic care (64 percent) (Partnership for Solutions, 2002).

Health care providers, before being held accountable for providing quality care, need to have clear evidence-based guidance. As described in Chapter 3, such guidance for survivorship care exists for some aspects of care, but it is not readily available to clinicians.⁵ There are practice guidelines for the follow-up of breast and colorectal cancer, but the focus of the guidelines is generally limited to detecting recurrences and second cancers. There are also guidelines for the management of certain late effects (e.g., lymphedema, osteoporosis, depression), but these have not been widely disseminated to the primary care clinicians most likely to encounter patients presenting with these symptoms. For many aspects of survivorship care—for example, health promotion (exercise and healthy diet)—clear

guidance is not available. For most types of cancer, the research needed to support such guidelines has not been conducted, but assembling that information is critical to informing clinicians and patients on appropriate post-treatment care. Clinical guidelines can also help avoid unnecessary and expensive care, and without them physicians may be under considerable pressure from patients to provide follow-up tests (Loprinzi et al., 2000). Without established guidelines, follow-up practices and expenditures have been shown to vary widely (Virgo et al., 1995; Johnson and Virgo, 1997).

Although guidelines for most aspects of survivorship care are lacking, providers are not following the guidelines that are available. This general phenomenon in medicine (Mendelson and Carino, 2005; Timmermans and Mauck, 2005) is apparent in survivorship care as well. For example, adherence to post-treatment surveillance guidelines is not uniformly high; depression is not routinely assessed; patients complete their primary treatment without knowing about their risks of late effects such as lymphedema; and individuals are not apprised of the implications of their cancer history to employment and health insurance (see Appendix 4A for a summary of studies of U.S. surveillance practice patterns).

Ultimately, health care quality measures will be developed to monitor quality problems in survivorship care. There are three types of quality problems in health care: too little care; too much care; and the wrong care (IOM, 1998). Too little care (underuse) is when patients do not receive evidence-based care. Too much care (overuse) is when patients receive unnecessary health care services that may cause side effects or pose other health risks. The wrong care (misuse) is when diagnoses are missed or delayed, ineffective treatments are used, effective procedures are done poorly, or errors are made. A framework has been created for identifying measures of quality for cancer care (McGlynn, 2002; McGlynn and Malin, 2002). Some quality measures have already been developed (Schachter et al., 2004; AHRQ, 2004a; Greenberg et al., 2005; IOM, 2005) or are under review (NQF, 2005). Few of the measures identified thus far are directly related to survivorship care. Some potential quality of care measures relevant to cancer survivorship are shown in Box 4-2. Such measures, if found to be clinically important, evidence based, practical to measure, and meaningful to providers and patients, could facilitate improvements in care.

The use of quality of care measures has a dual purpose: evaluating progress and motivating change (IOM, 2005). Monitoring systems may help to assess progress according to a particular set of indicators, but may also motivate change though a new focus on processes of care and outcomes. Quality of care measures for other chronic conditions such as diabetes have been developed through public/private partnerships and adopted by health systems to improve care (National Diabetes Quality Improvement Alliance, 2005).

When quality measures for survivorship care are developed and then adopted by health systems, office supports such as computerized reminder systems, the involvement of nonphysician providers in care, and standing orders for screening tests that have been shown to be effective in promoting preventive health services will likely also prove useful in prompting the delivery of appropriate survivorship care (IOM, 2003b).

Communication issues are a major challenge to those providing and coordinating survivorship care because individuals with cancer often have multiple providers at different sites of care. Discharge plans that are clear to

the oncologist may not be clear to the primary care provider. The migration of patients across health plans and the geographic movement that characterizes contemporary mobile society create a turnover in health providers. Large separations of time are characteristic of survivorship care, which can extend over a period of decades. Clinicians unfamiliar with the patient’s medical history may have difficulty in determining the names of the original doctors or health care institutions or in obtaining documentation of the cancer diagnosis and treatment regimen.

Relatively few health care providers have access to information systems and electronic medical records that would facilitate communication regarding survivorship care (Burt and Hing, 2005; Berner et al., 2005; Ash and Bates, 2005). According to a survey of U.S. physicians in 2003, only 7 percent said they routinely use e-mail to communicate with other doctors, and only 27 percent used electronic medical records (Audet et al., 2004). Perceived barriers to the adoption of information technology included the costs of system start-up and maintenance, lack of standards, and lack of time to consider acquiring, implementing, and using a new system. The investigators concluded that widespread adoption of information technology in health care would require federal leadership, potentially in the form of federal grants, increased physician reimbursement, and loans. A 2004 health information technology initiative, if fully implemented, would further the adoption of these communication tools (Thompson and Brailer, 2004). As part of this effort, a strategic framework for action has been developed to inform clinical practice, interconnect clinicians, personalize care, and improve population health. Although these developments are encouraging, improvements in information technology and adoption of electronic medical records must be viewed as enabling technologies. Improvements in the quality and coordination of care will require investments in medical practice support systems, financial rewards for quality improvement, and improved information technology infrastructure (Miller and Sim, 2004).

There are a few examples of technological innovation to improve communication between primary care providers and cancer specialists. An interactive Internet resource, Passport for Care, is being developed for survivors of childhood cancer. Elements of the website include: a guidelines generator that dynamically assembles recommendations for care individualized to each survivor according to his or her treatment history;⁶ an end-of-treatment summary, completed by the treating institution and available

to the survivor, that can be securely shared with providers at the direction of the survivors; individualized survivor education resources that are customized to the needs of each patient based on his/her disease and its treatment (and accessible to the survivor’s health care provider); an online survivor forum; and a section for survivor news and stories (Personal communication, M. Horowitz, Baylor College of Medicine, February 23, 2005). Once completed and evaluated, it is planned to encompass adult cancer survivors as well. Another initiative is the Cancer Survivor Virtual Information Center, a website with information for cancer survivors and their physicians. It is undergoing a pilot feasibility study targeting survivors of childhood Hodgkin’s lymphoma (Personal communication, K. Oeffinger, University of Texas–Southwestern, June 24, 2004). The website contains information about survivorship, but does not provide specific information about individual patients. As part of a Patient Gateway initiative at Partners HealthCare, a web-based information system is being piloted in oncology to enhance care coordination across multiple practices, including medical oncology, radiation oncology, and primary care (Personal communication, J. Wald, Partners HealthCare, March 22, 2005).

The Improving Cancer Care in Massachusetts (CAMA) project, sponsored by the Dana-Farber/Harvard Cancer Center, aims to improve cancer treatment in Massachusetts through the use of more efficient and timely data on cancer care quality (Ayanian, 2004). The CAMA investigators plan to assess the feasibility of a personal health record that integrates care information from multiple care sites. The plan is to give patients web-based access to relevant information from their medical records, and enable them to share information with their clinicians. The CAMA system would give clinicians more complete and timely medical information on their patients, including information from other care sites.

In Europe, a few systems are already in place. One hospital in Italy has, with cancer patients’ consent, made information about cancer care available to each patient’s primary care physician through a protected website (Personal communication, F. Testore, Head of Oncology Division, Ospedale Civile di Asti, Asti, Italy, November 22, 2004). Community-based physicians can also send e-mail requests to specialists through this system to get information about their patients. In a similar fashion, a secure ONCONET system has been established in the German federal state of Saxony-Anhalt to facilitate the shared care of cancer patients (Blobel, 2000). The system aids communication among 57 clinics and more than 160 general practitioners involved in oncology. The system includes an electronic health care record, scheduling functions, and the creation of doctor’s reports. It also supports research activities and quality assurance efforts for cancer care. Many other systems are being developed to improve communication between patients and physicians, such as Internet-based tools. Such systems

can be used to send e-mail, view the medical chart, provide health information, and send personalized reminders about care.

Until information technology advances and standard systems are in place to facilitate communications, cancer care providers need to rely on mechanisms at hand, such as a letter from a specialist to a primary care provider detailing the nature of a patient’s cancer, a summary of primary treatment, risks of late effects, and a survivorship care plan (see Chapter 3 for more information on individual survivorship care plans). Such a summary and cancer survivorship care plan should also be provided to survivors so they can be alerted to possible late effects, engage in recommended health promotion activities, and actively seek necessary care.

Both oncologists and primary care providers want to provide follow-up care to cancer patients after their treatment (Bope, 1987; Williams, 1994). However, when survivorship care is delivered, there is often no clear plan or designated responsibility. Some models of care that foster shared care with designated responsibilities are emerging, but these have not been extensively tested (see discussion of alternative models below). The creation of alternative models of delivery is needed to accommodate the growing numbers of cancer survivors.

Primary care clinicians, who manage general health and survivorship needs, must have systems in place to coordinate ongoing care with the work of oncologists and other specialists to provide streamlined attention to cancer-related issues. The primary care system is under tremendous stress, and only innovative models of coordination will serve to accommodate the expanded workload that will come from a growing survivor population.

Handling the cancer-related issues of the survivor population may also become more difficult for oncologists. While surveillance for recurrence, cancer spread, and second cancers is usually the responsibility of oncologists, many of the late effects of cancer are most appropriately managed by other providers such as physiatrists, cardiologists, fertility specialists, and psychologists. Oncologists will need the help of other clinicians to steer patients to the most appropriate specialists and to coordinate the delivery of care. The increasing volume of cancer survivors may also hamper their ability to see new patients. Gauging resource use according to the National Comprehensive Cancer Network (NCCN) guidelines provides one indicator of the magnitude of the problem. If NCCN guidelines are adhered to for breast cancer, a breast cancer survivor would make 10 to 15 visits over the course of 5 years. For colorectal cancer, the recommended number of visits is 14. The NCCN site-specific guidelines only cover issues related to the detection of recurrence and second cancer, not the full complement

of survivorship care that the committee recommends. The workload generated for specialists by cancer survivors can be significant. In one study, 210 patients who had achieved a complete or partial remission following treatment for Hodgkin’s disease between 1984 and 1990 generated 2,512 outpatient follow-up visits during the follow-up period (Radford et al., 1997). In another study of resource use, 535 women with breast cancer (all stages) made 8,206 follow-up visits during the first 5 years of follow-up (Kaija et al., 1996). With demographic trends predicting a surge in new cancer patients in need of follow-up care, there is an imperative to assess alternative models that will deliver needed services to cancer survivors.

In summary, physicians share some of the same frustrations as cancer survivors in terms of fragmentation of care, poor mechanisms for communication, and a lack of agreement on what constitutes survivorship care and how it should be provided. Of note is the apparent universality of fragmented chronic care, irrespective of delivery system. Such fragmentation in survivorship care is evident in studies carried out in European countries with national health plans (see Appendix 4C). Overcoming fragmentation rests on building an integrated systems approach—getting primary care providers, oncologists, and other care providers to work together as a team, to agree on how to communicate with each other, and to work out streamlined transitions in care.

Facilitating such an integrated system of care are improvements in communication technology. Efforts underway to improve the health care information technology infrastructure will likely help in overcoming problems of fragmentation and enhance chronic care delivery. Innovative applications of the Internet to promote shared care for cancer patients have been implemented in Europe and hold promise in furthering coordination of care. Until such innovations are more widely available, however, the burden of overcoming problems related to fragmentation largely rests with combined efforts of primary care and oncology providers. Office supports such as reminder systems, standing orders for certain screening tests, and standardized letters to primary care providers are among the tools available now. Providers of survivorship care should welcome consideration of new models for delivering this post-treatment care in light of the enormous resource use posed by the expansion of the survivorship population and a more comprehensive definition of what constitutes good survivorship care.

How different follow-up delivery strategies affect health outcomes and costs, perceptions of quality of life, and satisfaction with care is relatively unexplored. Most research in the area has been conducted in the context of breast cancer care. A recent systematic review on the effectiveness of fol-

low-up services concluded that there is insufficient primary empirical evidence on which to draw broad conclusions regarding best practice for breast cancer follow-up in terms of patient involvement in care, reductions in morbidity, and cost-effectiveness of service provision (Collins et al., 2004).

Some promising models of follow-up care have emerged, including a shared-care model that integrates oncology with primary care follow-up, a nurse-led model of care, and specialized multidisciplinary survivorship follow-up clinics. Relatively little is known regarding cancer survivors’ preferences for care, but there is a growing recognition of the need for flexible options for survivors who may have different needs and circumstances (Koinberg et al., 2002).

Shared care has been defined as “care which applies when the responsibility for the health care of the patient is shared between individuals or teams who are part of separate organizations, or where substantial organizational boundaries exist” (Pritchard and Hughes, 1995). Such a model implies personal communication and organized transfer of knowledge from specialists to primary care practitioners as well as patient involvement (Nielsen et al., 2003). Cancer patients may face several care transitions, for example, from their active treatment phase, to survivorship care, to care for a recurrence, and finally to palliative and end-of-life care. With such transitions, the focus of care can shift toward specialty care or toward primary care. When the shift is toward primary care, a smooth transition is more likely when the primary care physician receives relevant and timely information from cancer specialists (Braun et al., 2003).

Primary care physicians are actively providing cancer-related care according to ambulatory care surveys of U.S. office-based and hospital-based physicians. Of all the cancer-related visits that were made to physicians’ offices in 2001 and 2002, nearly one-third (32 percent) were made to primary care physicians (Table 4-2). Relatively fewer such visits were made to oncologists (18 percent). Cancer-related primary care visits were somewhat more common when they were for prostate cancer and lung cancer, which may indicate primary care providers’ active role in symptom management, palliative care, and end-of-life care.

The role of the primary care clinician in the shared-care model is to ensure that all of the physical and emotional health needs of the patient are addressed, to assume responsibility for aspects of care of the chronic disease that are feasible in the primary care setting, to refer the patient to specialists for periodic reevaluations and to address issues that require focused expertise, and to consult with specialists on areas of uncertainty. The role of the

specialist who participates in shared care is to provide guidance and treatment in the area of expertise, to keep the primary care clinician informed of the treatment plan, and to return the patient to the primary care provider for implementation of the treatment plan and for care of other health needs. This model is applicable for many conditions, including when primary care providers share care for the management of chronic heart failure (working with cardiologists), multiple sclerosis (working with neurologists), bipolar disorder (working with psychiatrists), and chronic renal failure (working with nephrologists).

The shared care model depends on the specialist and generalist having a common understanding of expected components of care and respective roles, and works best when providers communicate clearly with each other. Shared care may not be fully understood or practiced. Specialists may

believe that it is their obligation to follow up on their patients and that patients prefer to see them for their cancer-related care, even when that care could be provided by a primary care physician. They may also question the ability of primary care physicians to handle all components of follow-up care (e.g., detection of recurrence) (Steinberg and Rose, 1996). For their part, primary care physicians may not have been informed by care specialists of the important role they have to play in the ongoing care of cancer survivors. A balance between primary care and specialty care is clearly needed, as evidenced by the research of Earle and colleagues cited above (Earle et al., 2003; Earle and Neville, 2004).

Studies of shared cancer follow-up care in the United States are limited. According to national surveys, U.S. physicians report that care is shared by other physicians for nearly half (47 percent) of cancer-related visits (Table 4-3).⁷ Shared care is reported more often by physicians in hospital outpa-

tient departments than by physicians in office-based practices (for 55 versus 46 percent of visits, respectively).

In Europe, Canada, and Australia, several research initiatives have been undertaken to promote shared care (see Appendix 4C). Findings from this research suggest that cancer-related follow-up care can be provided by primary care providers and at lower cost without sacrificing patient satisfaction, but that a minority of patients wish to continue to see specialists for their follow-up care (Grunfeld et al., 1996, 1999a,b). The timely transfer of information from one care sector to another is critical to the concept of shared care. Addressing patient anxiety is also key to a successful transfer from specialty to primary care, and simple strategies, such as discussing plans for follow-up with patients and designing a standardized discharge letter, can ease the transition (Glynne-Jones et al., 1997; Braun et al., 2003). Successful shared-care models depend on professional training; general practitioners viewing their role in cancer care as enhancing patient care and improving their job satisfaction; and appropriate remuneration (Nielsen et al., 2003; Maher and Millar, 2003).

In summary, the shared-care delivery model appears to be especially relevant for the transition from active cancer treatment to survivorship care. U.S. primary care physicians are playing a significant role in cancer care, and nearly half of cancer-related ambulatory visits are characterized as shared care, but with available information it is not clear what the relative roles of specialists and primary care providers are in these settings. Research points to the importance of setting expectations and planning for follow-up early in the care process. Demonstrations and evaluations of shared survivorship care are needed, as are assessments of the shared-care model’s effects on resource use and costs.

Nurses have successfully led comprehensive, long-term follow-up clinics for survivors of childhood cancer throughout the United States (Hobbie and Hollen, 1993; Hollen and Hobbie, 1995; IOM, 2003a). Clinical nurse specialists have also delivered post-treatment oncology care in rural areas (White et al., 1996; Desch et al., 1999), successfully managed cancer symptoms (Given et al., 2002), promoted continuity of care (Smith et al., 1998), played a key role in cancer disease management programs (Lee, 2004), provided survivorship care in research settings (Ganz et al., 2000), and conducted survivorship research (Ferrell et al., 1992, 1995, 1997, 1998, 2003a,b; Dow et al., 1999; Ritz et al., 2000). Nurse-led follow-up services are acceptable, appropriate, and effective, according to a comprehensive review of the literature evaluating the impact of nurse-led follow-up in cancer care. Although the evidence base for the review was far from com-

plete, the review concluded that nurse follow-up can be an efficient means of maintaining contact with a large client group, providing vital support to vulnerable patients during their move into aftercare and beyond (Cox and Wilson, 2003). A nurse-led case management program also appears promising in improving cancer care for individuals with low incomes (Maliski et al., 2004).

Nurses would appear to be very well suited to providing survivorship care, given the emphasis in nursing education and training on patient assessment, symptom management, psychosocial care, and care planning. Nurses have assumed important roles in survivorship care in Europe and Australia. Research related to their integration into care systems is described in Appendix 4C. Most of these studies have found that cancer survivors are satisfied with follow-up care from nurses, but some cancer survivors prefer to remain with a specialist physician for their post-treatment long-term care (Earnshaw and Stephenson, 1997; Pennery and Mallet, 2000; Renton et al., 2002; Brown et al., 2002; Papagrigoriadis and Heyman, 2003; Koinberg et al., 2004). Creative strategies for harnessing the talents of American nurses in cancer survivorship have been proposed (Leigh, 1998; Pelusi, 2001). Despite the obvious appeal of a nurse-led model of cancer follow-up care, such a model has not been widely implemented or evaluated in the United States.

A factor limiting the feasibility of having nurses provide survivorship care is the short supply of nurses (see Chapter 5). In addition, nurses are more likely to work in hospitals than in outpatient or community-based settings, where cancer follow-up care is most likely to be delivered (see Chapter 5).

According to national surveys of ambulatory care, registered nurses or physician assistants are involved in 27 percent of cancer-related ambulatory care visits. Nurses are much more likely to be involved in care during visits to hospital outpatient departments than physician office-based practices (67 versus 22 percent, respectively) (Table 4-4). The focus of the surveys represented in Table 4-4 is on ambulatory care settings where individual encounters with physicians take place. Nurses are often involved in the administration of chemotherapy and in the provision of supportive care, but the estimates provided in Table 4-4 excluded patient visits to freestanding ambulatory care centers and hospital outpatient chemotherapy, radiotherapy, physical medicine, and rehabilitation clinics.

In summary, although a nurse-led model of cancer follow-up appears to be promising, there is relatively little research available to judge its effectiveness and acceptance in the United States. Nurses are central to any interdisciplinary effort in survivorship care and in some instances, nurses may be the best survivorship care providers. Barriers to adopting nurse-led models of survivorship care include a shortage of trained oncology nurses,

especially in outpatient settings (see Chapter 5), and the potential preference on the part of some cancer patients to receiving follow-up care from physicians.

A few academic centers have developed cancer survivorship clinics that concentrate needed expertise to provide follow-up care in one location. Such programs can facilitate the application of a holistic and coordinated approach to medical and psychosocial problems. One potential disadvantage of such clinics is the separation of survivorship care from other routine care and the attendant difficulties of communication and coordination. Selected attributes of the few clinics for survivors of adult cancers are described in Table 4-5.

According to representatives of these clinics, they are labor intensive and the respective roles of physicians and other personnel are not well established. Many of the services available in the clinics are provided by expert oncology nurses and nurse practitioners. A barrier to the dissemination of such clinics is the uncertainty regarding adequate reimbursement for

the range of services provided, especially because nonphysician personnel deliver much of the care. In addition, referrals to the clinics are limited because many cancer survivors and oncologists are not aware of the clinics, probably because they were established only in the past few years. Also, some patients prefer to continue seeing their oncologists, and some oncologists would rather follow patients themselves.

Although relatively few survivors of adult cancer are cared for in specialized survivorship clinics, specialized follow-up clinics for survivors of childhood cancer have emerged as an acceptable model in the past decade. There are 35 comprehensive follow-up programs for survivors of

pediatric cancer, according to the website of the Association of Cancer Online Resources (Pediatric Oncology Resource Center, 2003).⁸ According to a 2000 survey, 44 percent of childhood cancer survivors reported that they had attended a clinic expressly for follow-up of their cancer (Kadan-Lottick et al., 2002). Information collected on health behaviors during an earlier period indicated that 42 percent of young adult survivors reported having had a cancer-related visit and 19 percent a visit at a cancer center (Oeffinger et al., 2004). The clinics diagnose and manage treatment-related sequelae; provide education and counseling; develop surveillance recommendations; address issues related to insurance, education, and employment; and conduct research on late effects (IOM, 2003a).

Pediatric nurse practitioners trained in oncology generally manage the clinics in collaboration with one or more pediatric oncologists. Additional personnel involved, usually on a referral basis, include social workers, psychologists, and other specialists (e.g., cardiologists, fertility specialists, genetic counselors). Well-established programs typically assess 300 to 400 survivors annually, while newer programs or those serving smaller patient populations report seeing only 50 or 60 patients each year. Most programs picked up patients after they had completed their care from their treating oncologist, generally when they were 2 years removed from the completion of therapy and/or 3 to 5 years from diagnosis, and disease free.

Although these comprehensive follow-up programs are addressing the concerns of cancer survivors and their families, there have been no evaluations of their effectiveness or value. As a consequence, a referral to a long-term follow-up program is often initially met by denial from health insurers who contend that such care is not medically necessary. Efforts to overturn these denials usually succeed in securing authorization for follow-up care, but insurers often stipulate that all laboratory and diagnostic tests be performed within network. This can present logistical problems to patients who must travel extended distances to access follow-up care. In addition, reimbursement for services provided in long-term follow-up clinics typically falls far short of compensation for the time and effort required to evaluate and manage these patients. In fact, many services garner no reimbursement for surveillance programs, including those provided by social workers, education specialists, genetic counselors, nutritionists, or dentists. Consequently, hospitals often rely on grant support or philanthropic dona-

tions to partially subsidize the costs of providing long-term follow-up care. Similar issues will likely arise for clinics serving survivors of adult cancer.

Although some cancer centers have focused on survivorship care by creating specialized survivor clinics, Memorial-Sloan Kettering Cancer Center is integrating survivorship care into disease-site-specific clinics. After completing primary therapy, survivors continue to be seen in the same medical clinic where they received treatment, but receive follow-up care from a provider with expertise in survivorship, usually a nurse practitioner. This model is currently being pilot-tested in lung, head and neck, prostate cancer, and lymphoma clinics (Personal communication, M. McCabe, Memorial Sloan-Kettering Cancer Center, March 23, 2005). Core evaluation criteria for survivors are being developed and will be used institutionwide, with specialized items added for each disease site. In addition to medical evaluation, Memorial Sloan-Kettering is also piloting a psychosocial screening effort. A screening questionnaire to evaluate emotional functioning and facilitate immediate referrals is currently being pilot-tested and, if successful, will be put into general use (Personal communication, J. Ford, Memorial Sloan-Kettering Cancer Center, March 23, 2005). A sexual health clinic, smoking cessation services, and fertility preservation services are being established or expanded to supplement the survivorship services that are provided in each site-specific clinic. These efforts expand on Memorial Sloan-Kettering’s existing survivorship infrastructure, which includes the Post-Treatment Resource Program, an education and support center that has served more than 50,000 people since it was established in the 1980s. This program is open to all survivors, regardless of where they received primary treatment, and provides seminars and workshops on late effects and other survivorship issues, consultation on insurance and employment issues, and professionally led educational support groups (MSKCC, 2004).

At cancer centers that do not have a dedicated survivorship clinic, support services and educational programs are still often available to survivors. For example, a program similar to the Sloan-Kettering Post-Treatment Resource Program is being developed at the Nevada Cancer Institute with the support of the Lance Armstrong Foundation (LAF, 2005a; NVCI, 2005). The Lance Armstrong Foundation Cancer Survivorship Center, which will be located in the patient library at the Nevada Cancer Institute, will provide educational programs, translation and interpretation services, navigation services, and general support to survivors and their families. The program, which is currently in development, will be tailored to the needs of survivors in Nevada as identified by a survey being conducted of cancer survivors in the state.

In addition to the general cancer survivorship clinics described in Table 4-5, there are a number of more narrowly focused referral clinics that provide some aspects of survivorship care. For example, The University of

Texas M.D. Anderson Cancer Center has a clinic for the diagnosis and management of fatigue (M.D. Anderson Cancer Center, 2004); Beth Israel Hospital in New York has a sexuality clinic to address post-treatment sexual late effects (Continuum Health Partners, 2005); and the Fox Chase Cancer Center has a family risk assessment program to provide screening, genetic counseling and testing, and follow-up services (Fox Chase Cancer Center, 2004). Psychosocial interventions, lymphedema care, and menopausal symptom management are other types of care that could be handled by such specialized referral clinics.

In summary, a handful of dedicated clinics have been established to meet the needs of survivors of adult cancer, but they see relatively few patients and have not been formally evaluated. Other clinics are available to manage particular late effects, for example, fatigue, sexual dysfunction, genetic risk, and symptoms of menopause. These specialized clinics are available to individuals with and without cancer and so may be more economically viable. There is virtually no information on the cost-effectiveness and acceptability to patients and providers of either generalized cancer survivorship clinics or the more specialized cancer-related ancillary clinics. There is more experience with clinics that have been established to meet the needs of childhood cancer survivors, but here too, there has been no research to evaluate their cost-effectiveness. Difficulties in obtaining reimbursement for services through these clinics will persist until evidence of their effectiveness has been demonstrated.

Much of the research on the organization of cancer survivorship care has been conducted in Europe and Canada (findings from international studies are summarized in Appendix 4C). While much can be learned from the experience in other countries, the U.S. health care system is somewhat unique. First, adequacy of insurance coverage varies greatly, from no coverage at all for an estimated 11 percent of individuals ages 25 to 64 with a history of cancer, to somewhat generous coverage for elderly cancer survivors enrolled in Medicare who, in addition, have private supplemental coverage (see Chapter 6 for a review of insurance issues). In addition to the confusing array of health insurance products that are available, health care consumers in the United States face a heterogeneous delivery system that includes, at one extreme, managed care, with its focus on controlling costs and coordinating care, and, at the other extreme, fee-for-service care that optimizes choice of health care providers, but leaves care coordination to the patient and doctor. Although the United States lacks a comprehensive national system of care, there is an organized federally supported infrastructure for cancer-related clinical research and care.

This section of the chapter reviews the limited information on where cancer-related care is delivered and what survivorship services are available within the U.S. cancer care system. Although most cancer care is provided in outpatient settings, little information is available on survivorship care or service availability in these settings. More information is available on survivorship-related services that are provided in hospitals with well-developed cancer programs. Examples of the delivery of certain cancer survivorship services are described in Appendix 4D (genetic counseling, rehabilitation, and psychosocial services).

Until the early 1980s most cancer care was delivered in hospitals. The dramatic shift from hospital to ambulatory care began in 1983 when Medicare’s inpatient Diagnostic Related Group payment system went into effect. With the added cost-constraining influence of managed care, cancer care has shifted largely to outpatient settings. Mastectomy and other breast surgical procedures, for example, have been increasingly performed in outpatient day-hospital settings (Case et al., 2001). The implication of this shift in site of care is that people cared for in outpatient settings may no longer have access to the many supportive care personnel that are hospital based, such as social workers, nurse educators, psychologists, and clergy. According to national health care surveys, there were an estimated 1.2 million cancer-related hospitalizations and 20.6 million ambulatory care visits in 2002 (Tables 4-6 and 4-2).

When a person with cancer is hospitalized, the availability of ancillary services that might be needed long term (oncology social workers, rehabilitation specialists) often vary by care setting. A rich array of hospital-based specialists and services may, for example, be available in larger hospitals, but absent in smaller hospitals. Fifteen percent of cancer-related hospital discharges are from hospitals with fewer than 100 beds where ancillary and supportive care resources may not be widely available. An equal share of cancer-related hospital discharges are from bigger hospitals (500 or more beds) that likely have more supportive care resources.

In terms of ambulatory care among adults, most cancer-related visits are to physicians’ offices, with only 11 percent of visits made to hospital-based outpatient departments where supportive care specialists tend to be available. For example, a registered nurse, nurse practitioner, or physician’s assistant is three times more likely (67 versus 22 percent) to be involved in a cancer-related visit to a hospital outpatient department than a physician’s office (Table 4-4).

Efforts to improve services to members of minority racial/ethnic groups or to the uninsured could focus on hospital outpatient departments because

disproportionately more cancer-related care is provided to these groups at these sites of ambulatory care than in physician offices (Table 4-7).

Changes in the organization of cancer care can facilitate the shared-care model. Comprehensive breast care programs have been developed over the past decade to put under one roof the many providers and services that an individual with breast cancer might need to make breast care simpler and to provide “one-stop” care. Typically, these programs employ physician specialists, clinical nurse specialists, social workers, psychologists, and other providers to meet the range of breast cancer needs throughout diagnosis, treatment, and follow-up. While care in such settings is likely more

integrated, some evidence suggests that surveillance tests for breast cancer are overused in breast cancer centers (Lash and Silliman, 2001). There are no data on how many individuals with breast cancer are seen in such programs, but it is likely to be a small fraction of the total number of breast cancer patients (Frost et al., 1999; Rabinowitz, 2002). Analyses of care provided to Medicare beneficiaries during 1994–1995 suggest that surgical treatment for older women with breast cancer is decentralized and being provided primarily by surgeons in low-volume settings (Neuner et al., 2004). Most (55 percent) surgeons providing breast cancer surgery worked in solo or two-physician practices. Only 12 percent of surgeons worked in hospital-based practices.

Cancer survivorship is a distinct phase of care, but it is difficult to know where the 10 million cancer survivors are along the cancer care

trajectory. One study of Medicare beneficiaries diagnosed with colorectal cancer between 1975 and 1996 assessed the type of care survivors were receiving in 1996. Investigators classified care into four categories:

1. Initial diagnosis treated with curative intent

2. Post-diagnostic monitoring

3. Treatment for recurrent/metastatic disease or second primaries

4. Terminal care

More than one-third (38 percent) of beneficiaries were determined to have received post-diagnostic monitoring care (Mariotto et al., 2003). The prevalence of type of care in 1996 is shown in Figure 4-2 by years since diagnosis. Those diagnosed within the past 2 years were usually in the initial phase of care. After 2 years, however, the monitoring phase of care predominates. This first study of “care prevalence” relied on analysis of the linked Surveillance, Epidemiology, and End Results (SEER)-Medicare database,⁹ which allows investigators to examine the health care claims of individuals following their diagnosis of cancer.

With the limited number of dedicated cancer survivorship programs and large and growing population of cancer survivors, the committee attempted to assess the availability and scope of survivor-oriented services within cancer centers. Information was sought for the following sites of care:

• National Cancer Institute-designated Comprehensive Cancer Centers

• Cancer programs approved by the American College of Surgeons’ Commission on Cancer

• Community cancer centers that are members of the Association of Community Cancer Centers

The National Cancer Institute (NCI) supports 60 major academic and research institutions throughout the United States to sustain interdisciplinary programs in cancer research (NCI, 2005a). A relatively small proportion of individuals with cancer are cared for within these institutions, but

FIGURE 4-2 Average number of months of phase of care in 1996 among patients diagnosed with colorectal cancer from 1975 to 1996, by years since diagnosis.

SOURCE: Mariotto et al. (2003).

they provide important opportunities for participation in clinical trials and other research. Cancer Center Support Grants fund the scientific infrastructure of the cancer centers, and recipients of these grants are recognized as NCI-designated cancer centers. Two types of cancer centers are designated based on the degree of specialization of their research activities (Figure 4-3): (1) comprehensive cancer centers integrate research activities across laboratory, clinical, and population-based research (there were 38 such centers in 2005); and (2) cancer centers not designated as “comprehensive” have a scientific agenda that is primarily focused on basic sciences, population sciences, or clinical research, or any two of the three components (there were 22 such cancer centers in 2005).

Although NCI grants are used solely to support the research infrastructure at cancer centers, all designated cancer centers also provide clinical care and service for cancer patients. In addition, comprehensive cancer centers have extensive ancillary cancer-related activities such as outreach, education, and information dissemination. The NCI-designated cancer centers are viewed as playing “an important role in their communities and regions and serve to influence standards of cancer prevention and treatment” (NCI, 2005a).

A telephone survey conducted in 2001 of representatives of all NCI-designated comprehensive cancer centers (there were 37 such centers at the time) found varying degrees of availability of medical and psychosocial

FIGURE 4-3 NCI-designated cancer centers.

SOURCE: NCI (2005a).

services for cancer survivors (Table 4-8) (Tesauro et al., 2002). Although most (70 percent) centers had a lymphedema management program in place, fewer than half had professionally led support groups (49 percent) and long-term medical care programs (38 percent). Relatively few (14 percent) had programs to provide counseling regarding nutrition, fertility, and sexual concerns. Surveys of NCI clinical and comprehensive cancer centers conducted in the early 1990s indicate that virtually all of the responding cancer

centers offered group support programs (Presberg and Levenson, 1993; Coluzzi et al., 1995; Gruman and Convissor, 1995). A recent survey on genetics services at NCI clinical and comprehensive cancer centers indicates that that most centers provide such services for evaluation of familial cancer (82 percent) (Epplein et al., 2005).

Most people with cancer are treated in community hospitals close to their homes. In an effort to assure the quality of cancer care throughout the nation, the American College of Surgeons in 1922 established a Commission on Cancer (CoC) that sets standards for quality multidisciplinary cancer care, surveys hospitals to assess compliance with those standards, collects data from approved hospitals to measure treatment patterns and outcomes, and uses the data to improve cancer care outcomes at the national and local levels (Personal communication, K. Phair, Cancer Liaison Program Administrator, CoC, November 9, 2004).¹⁰ As of 2003, there were more than 1,400 CoC-approved cancer programs in the United States and Puerto Rico, representing nearly 25 percent of all hospitals (CoC, 2003). More than 70 percent of all newly diagnosed cancer patients are treated in CoC-approved cancer programs, either as an inpatient or when visiting an outpatient hospital-based practice or clinic. Some of the CoC standards pertain to services of potential benefit to cancer survivors (Box 4-3).

CoC staff provided information to the committee on the supportive care services offered at CoC-approved facilities in the previous year. The information provided is self-reported by the institutions on a web-based application, which is updated twice a year (Personal communication, K. Phair, Cancer Liaison Program Administrator, CoC, November 9, 2004). Cancer centers submit detailed information on their programs in advance of their onsite survey. A service was considered to be present if it was provided at the facility, in a staff physician’s office, or by referral. At least some level of supportive care was available through the reporting sites, for example, psychology and mental health providers were available in 88 percent of programs, a pain management service was available in 92 percent of programs, and lymphedema rehabilitation services were available in 77 percent of programs (Table 4-9).

Although the level of survivorship services appears relatively high in CoC-approved cancer programs, it is difficult to know precisely how accessible services are to cancer survivors. Many of the positive responses may represent services provided hospitalwide. If there were only one psychologist available within an institution, for example, the availability of psychological services may be stretched thin. Unclear also is the level of training of staff regarding issues related to cancer survivorship. Some services may be limited to patients on active treatment, leaving a void for long-term survivors. Because referral sources were included as positive responses, the logistics of accessing care at a distance may have a major impact on the true availability of services. Although many important areas are included in the CoC survey, information on significant areas of survivorship care such as genetic counseling or sexuality counseling is not available.¹¹ Although these data have some shortcomings, they provide important information on the

availability of supportive services, at some level, within the CoC-approved cancer program. Unknown entirely is how available support services are for the approximately 30 percent of patients treated in non-CoC-approved hospitals.

The Association of Community Cancer Centers (ACCC) is a membership organization that includes 650 medical centers, hospitals, oncology practices, and cancer programs that are generally recognized to have structured cancer programs. The organization estimates that its members provide services to 40 percent of all new cancer patients in the United States (ACCC, 2004a). ACCC has issued voluntary guidelines for cancer programs to encourage the development of comprehensive and interdisciplinary programs. Several guidelines relate to care for cancer survivors. Shown in Box 4-4 are guidelines for rehabilitation and patient advocacy and cancer survivorship. Other guidelines are available for pain management, nutritional support services, and genetic risk assessment, counseling, and testing (ACCC, 2004b).

To learn more about survivorship services available within ACCC cancer centers, an informal survey was conducted in 2002 of cancer center program coordinators.¹² Program coordinators were asked about the availability of several survivorship-related services.¹³ The service did not have to be housed in the center: referrals to external organizations or facilities at other centers, including local academic institutions, were considered to serve the center’s needs. As stated above, many of the clinics/organizations served both survivors and patients in active treatment, and it was not possible to identify services that were dedicated only to survivors. Table 4-10 shows the availability of these services across responding centers. The availability of lymphedema services and support groups appears to be somewhat lower in these ACCC-member cancer centers than in the NCI-designated comprehensive cancer centers (Table 4-8).¹⁴

With the information at hand, it is difficult to gauge the availability of cancer survivorship clinical and supportive services in cancer centers. In

part, the difficulty in ascertainment may be due to the lack of clear definitions relating to survivorship care. The availability of certain specialized services among cancer centers appears to vary substantially. Lymphedema services were, for example, reported in 77 percent of CoC-approved cancer programs according to 2004 CoC survey data, 70 percent of comprehensive cancer centers according to a 2001 NCI-sponsored telephone survey, and 38 percent of ACCC-member cancer centers according to a 2002 informal survey. Likewise, the availability of general or disease-specific support groups seems to vary widely. Sexuality counseling and dedicated fatigue management appear to be rarely available.

To better understand the adequacy of cancer survivorship clinical and support services, an in-depth survey from the perspectives of both survivors and providers of oncology and primary care is needed. This survey would allow conclusions to be drawn about such issues as the spectrum of services that are needed, levels of unmet need, the respective roles of specialty and primary care providers, and the role of specialized clinics versus integration of survivorship care into routine oncology and primary care practice. Such a survey would also assist in the development of standardized survivor instruments to facilitate needs assessments and remedial interventions. Ultimately, a set of quality indicators and benchmarks is needed so that survivorship care can be evaluated, regardless of the setting in which it is provided or the particular type of practitioner involved in care.

An important element of the chronic disease model is mobilizing community resources to meet needs of patients. There is a wealth of cancer-related community support services available through voluntary organizations, many of them at no cost. Many supportive services are offered through call centers, web-based information and discussion boards, and direct service delivery. Table 4-11 describes some of the programs that are available nationally. Among the services these programs offer are information, peer support, individual support by telephone, information on nutrition and exercise, and assistance with appearance, for example, wigs and breast prostheses.

Cancer patients make frequent inquiries about supportive services. Health providers are often asked about support groups, counseling, nutrition, financial aid, health insurance, and employment, according to a survey of physicians, nurses, and social workers providing cancer care (Matthews et al., 2004). Although community-based support services are of great interest, some evidence suggests that health care providers are not providing their patients with information or referral to support groups and other resources in their communities (Guidry et al., 1997; Matthews et al., 2002). Furthermore, a recent review of the role of community-based and

philanthropic organizations in meeting the needs of cancer patients and caregivers found gaps in service provision for assistance with practical needs such as transportation, home care, child care, financial assistance, and psychosocial support (Shelby et al., 2002). The authors note that with increasing use of outpatient care for cancer patients, a greater demand for practical assistance can be expected in the future.

This section of the chapter highlights selected programs that provide services nationally, those offered by the American Cancer Society and the Wellness Community, selected programs that focus on the needs of Hispanic and African-American cancer survivors, and support available by telephone or online. Appendix 4D includes a description of the delivery of psychosocial services for women with breast cancer to illustrate some of the barriers to access to care.

The American Cancer Society provides extensive information on cancer patient support and special topics in survivorship issues and sponsors several programs for cancer survivors (see Table 4-11; Box 4-5). Detailed guides on what to expect after treatment for the most common cancers, including surveillance practices, are available at the ACS website. Also available is information on adopting healthy lifestyles after cancer treatment. The ACS’s Cancer Survivors Network is a web-based program supporting online interaction among cancer survivors. Participants can create a personal website; post pictures, poems, and other expressions; listen to or read prerecorded stories of other survivors; and engage in online discussions in English, Spanish, and Chinese.

The I Can Cope program started as a series of classes for individuals with cancer, but has been adapted for use as multiple standalone modules on a variety of topics ranging from financial management to coping with side effects. A health care navigator program is under development by ACS that will direct individuals to resources within their community.

The Reach to Recovery program, offered since 1960, provides peer support to women with breast cancer. Initially designed for women in the hospital after mastectomy, the program is now offered largely in the com-

munity. Attempts are made to match volunteer mentors with women with breast cancer by age, type of procedure, and cancer stage. Trained volunteers made nearly 65,000 visits in 2003 (Teschendorf, 2005). Road to Recovery is a community-based program that provides rides to individuals with cancer who need transportation to treatment. Although the program is already offered in various forms in many states, it continues to expand nationwide. An estimated 66,000 people were served nationally by this program in 2003 (Teschendorf, 2005).

Since 1989, the Look Good…Feel Better (LGFB) program has provided assistance with makeup, skin care, and other aspects of appearance (e.g., information on wigs, turbans). The program is co-sponsored by the Cosmetic, Toiletry, and Fragrance Association Foundation, the National Cosmetology Association, and ACS. In 2003 the LGFB program reached about 31,000 women (Teschendorf, 2005). A magazine and catalogue called tlc, or Tender Loving Care, combines articles, information, and products for women coping with cancer treatment (e.g., wigs, mastectomy forms and products, hats and head coverings, bathing suits, and lingerie) (ACS, 2004).

The ACS’s Man to Man program helps men cope with prostate cancer by providing community-based education and support to patients and their family members. A major part of the program is the self-help and/or support group. Volunteers organize free monthly meetings where speakers and participants learn about and discuss information about prostate cancer, treatment, side effects, and how to cope with the disease and its treatment. Approximately 27,000 men participated in Man to Man in 2003 (Teschendorf, 2005).

The Wellness Community, founded in 1982, is an international nonprofit organization that provides free education and support services to individuals with cancer and their families (see Table 4-11) (The Wellness Community, 2004b). The founding principle of The Wellness Community is the “Patient Active Concept,” which states that patients who participate in recovery improve the quality of their lives and may enhance the possibility of recovery. In 2004, The Wellness Community reached more than 150,000 people affected by cancer. The free programs are led by licensed health care professionals, including social workers, psychotherapists, nurses, and psychologists, and all programs and training curricula are uniform throughout the country. Its online resources include webcasts, relaxation exercises, cancer-specific educational materials, continuing education for oncology nurses, and online support groups hosted through “The Virtual Wellness Community” (The Wellness Community, 2004a). Many of the online programs are also available in Spanish.

Community-based educational programs are offered at all The Wellness Community locations and at some independent cancer clinics. A variety of topics are covered, and programs are designed to help people with cancer and their caregivers feel a greater sense of hope, control over their situation, and community. National education programs are focused on coping with cancer as a chronic condition, with strategies for managing the disease, its side effects, and a host of lifestyle and emotional concerns that arise over time. The Frankly Speaking about New Discoveries in Cancer program, developed in 2004, covers information about the most current medical and psychosocial advances, and addresses topics such as complementary and alternative medicine and psychological concerns (The Wellness Community, 2005).

Evaluations of The Wellness Community programs are underway and include a comparison of face-to-face and online support services, an examination of provider best practices, and analyses of outcomes associated with interventions (Lieberman et al., 2003). Research partners include Stanford University, University of California–San Francisco, M.D. Anderson Cancer Center, Catholic University, and the National Coalition for Cancer Survivorship.

A number of psychosocial support programs are targeted to members of racial and ethnic minority groups. Nueva Vida, a program to meet the needs of Hispanic women in the District of Columbia, was established in 1996 and offers support groups, crisis intervention, and peer support to breast cancer survivors (Nueva Vida, 2005a). Because many women served are poor, uninsured, and speak Spanish, Nueva Vida provides “patient navigation” services to help women make appointments and get appropriate follow-up care, assistance with health insurance applications and claim translation, and social supports (assistance with transportation, babysitting). Support groups focus on stress reduction, education (e.g., nutrition), and the implications of cancer for families. Nueva Vida maintains a national psychosocial support resource directory for Hispanic women with breast cancer; the directory includes programs in 20 states (Nueva Vida, 2005b). The most pressing needs of Hispanic women identified by programs surveyed thus far are related to poor access to health care, information, and psychosocial support, and difficulties navigating the health care system.

Sisters Network, Inc., was founded in 1993 to address the needs of African-American women with breast cancer (Sisters Network, Inc., 2005). The only national African-American breast cancer survivors’ organization

in the United States, Sisters Network has 39 affiliate chapters across the country. More than 3,000 members are involved in providing breast health training, attending conferences, and serving on various national boards and review committees. Chapters offer individual and group support, community education, advocacy, and research-related activities (e.g., promoting access to clinical trials). The 2005 national Sisters Network Conference “The New Spirit of Survivorship” focused on disparities, risk factors, and survivorship (CDC, 2005a).

The Prostate Health Education Network (PHEN) was founded by a prostate cancer survivor to raise awareness of prostate cancer among those at high risk, especially African-American men (PHEN, 2005). PHEN is establishing “brotherhoods” of prostate cancer survivors across the country that will focus on educating men about prostate cancer and mentoring and counseling those newly diagnosed with the disease, but will also provide support to each other as survivors. The Dana-Farber Cancer Institute and PHEN recently partnered to establish the first prostate cancer support group for African-American men in the Boston area (Dana-Farber Cancer Institute, 2005).

Many psychosocial support services are available by phone to residents of rural areas and those living far from cancer centers, and increasingly

online through the World Wide Web. This section of the report describes three such programs: Cancer Care, the Association of Cancer Online Resources (ACOR), and CHESS (Comprehensive Health Enhancement Support System). In addition, a referral resource is available online to help locate psychosocial and mental health services through the American Psychosocial Oncology Society (APOS, 2004). There are other organized online lay information and support groups, including Fertile Hope (FertileHope.org), Living Beyond Breast Cancer (lbbc.org), and Cancer and Careers: Living and Working with Cancer (cancerandcareers.org), and many Internet chat rooms. There are also radio resources, for example, the Group Room weekly cancer talk radio show (and Internet simulcast) provided by Vital Options® International, which can reach rural areas. Chapter 6 reviews some online resources related to employment and insurance programs. The potential for these resources to help survivors, provide psychosocial care, and engage in research is not clear but merits investigation.

CancerCare Since 1944, CancerCare has provided emotional support, information, and practical help to people with cancer and their families. With a staff of more than 40 professional oncology social workers, this nonprofit social service agency provides individual and family counseling, group counseling (in-person, online, or by telephone), referrals to other resources, direct financial assistance, and teleconference programs that allow people to listen via telephone to experts in oncology or related fields (CancerCare, 2005a). Previous teleconference programs have covered coping strategies for side effects, communicating with one’s health care team, and how best to maintain quality of life while living with cancer. CancerCare has recently teamed with the Lance Armstrong Foundation to create a counseling program specifically for cancer survivors that includes an online forum for survivors and individualized counseling (CancerCare, 2005b). In addition, CancerCare also hosts an annual teleconference series on survivorship; the 2005 workshop covered care after treatment, fatigue and memory long-term effects, and health-promoting behaviors. In 2004, CancerCare provided services to more than 90,000 people, and all services are provided free of charge. According to an analysis of requests for assistance made to CancerCare from 1983 to 1997, the most commonly reported problems relate to personal adjustment to illness and financial, home care, and transportation needs (Shelby et al., 2002).

CancerCare is also involved in professional education and training, offering seminars, workshops, and teleconferences in all fields of oncology care. Distance learning programs are conducted entirely on the website. (Chapter 6 includes a description of services related to employment and insurance issues.)

Association of Cancer Online Resources ACOR provides opportunities for individuals with cancer to interact with other cancer patients, therapists, or doctors through chat rooms, e-mail, or listservs. Psychosocial support is available through listservs dedicated to breast cancer, cancer-related depression, and caregivers. Another feature of ACOR is the provision of information about cancer from sources deemed to be credible (ACOR, 2004a).

CHESS (Comprehensive Health Enhancement Support System) CHESS provides information, social support, and decision-making assistance via personal computers placed in a patient’s home. Women of all ages and varied socioeconomic backgrounds have successfully used the program to become active participants in their care following a diagnosis of breast cancer. CHESS allows participants to talk anonymously with peers, question experts, learn where to obtain help and how to use it, read stories about people who have survived similar crises, read relevant articles, monitor their health status, consider decision options, and plan how to implement decisions (Gustafson et al., 1993; Shaw et al., 2000). Support group use is the most popular aspect of CHESS. CHESS support groups are monitored by a facilitator. CHESS is undergoing further development as part of NCI’s Centers of Excellence in Cancer Communications Research Initiative (NCI, 2005c).

In addition to these support services, many sources of information are available on survivorship issues (Box 4-6).

Opportunities in the United States to develop regional approaches to care for cancer survivors could be facilitated by the Centers for Disease Control and Prevention’s (CDC’s) efforts to build the capacities of states—and, in turn, their local partners—to both develop and implement comprehensive cancer control plans (Brady, 2004). As part of CDC’s National Comprehensive Cancer Control Program, such plans have been defined as those with an integrated and coordinated approach to reducing the incidence and rates of morbidity and mortality from cancer through prevention, early detection, treatment, rehabilitation, and palliation (CDC, 2004a).

CDC has identified a useful framework for the establishment of a state cancer control program and has provided various models for comprehensive planning and evaluation. Essential elements of a comprehensive plan include (Abed et al., 2000a,b) the following:

• Strategies and mechanisms for developing and maintaining partnerships,

• Assessments and surveillance,

• Infrastructure development,

• Public education,

• Professional education,

• Policy and legislative activities, and

• Evaluation and monitoring.

An online resource called Cancer Control Planet helps states to assess program priorities, identify potential partners, determine the effectiveness of different intervention approaches, find research-tested programs and products, and plan and evaluate their program (Cancer Control Planet, 2004). A locus at the site on survivorship issues is under development (Rowland, 2005). All but 1 state (Idaho) receive support from CDC for their comprehensive cancer control program; 28 states are implementing their plans; and 21 states and the District of Columbia are developing their plans (Figure 4-4) (CDC, 2004b).

With an understanding that cancer survivors could benefit tremendously from a coordinated public health effort, CDC in collaboration with the Lance Armstrong Foundation developed A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies (CDC and LAF, 2004). The plan includes four goals:

1. Preventing secondary cancers and recurrence of cancer whenever possible.

2. Promoting appropriate disease management following diagnosis and treatment to ensure the maximum number of years of healthy life for cancer survivors.

3. Minimizing preventable pain, disability, and psychosocial distress for those living with, through, and beyond cancer.

4. Assisting cancer survivors in accessing family, peer, and community support and other resources they need for coping with their disease.

This action plan and the strategies outlined within the plan shown in Box 4-7 will serve as a guide to states as they expand their comprehensive cancer control plans to include survivorship. As part of a pilot project, CDC is analyzing four organizations’ survivorship-related activities that are national in scope (i.e., those of the American Cancer Society, CancerCare, the Lance Armstrong Foundation, and the National Coalition for Cancer Survivorship). The results of this pilot project will help CDC determine how it can most effectively address gaps in cancer survivorship within the realm of public health (Personal communication, P. Thompson, CDC, April 26, 2005).

FIGURE 4-4 Status of CDC State Comprehensive Cancer Control Plans.

SOURCE: CDC (2004a).

The CDC-funded comprehensive cancer control activities vary by state depending on local needs and preferences. Comprehensive cancer control plans have been oriented to primary and secondary prevention activities such as tobacco control and cancer screening; however, states have recently been adding some survivorship elements to their plans (True, 2004; Texas Cancer Council, 2005). In the area of data collection, some plans describe expanding current cancer registry activities to obtain information on survival, rehabilitation, and palliative care. In the area of consumer education, some plans address the need for better information regarding side effects of treatment and quality of life issues. Ensuring appropriate and continuous psychosocial support is addressed in some plans. There is little consistency across plans on how survivorship is defined and addressed, but when implemented, these plans provide an opportunity to approach survivorship with a public health focus. The Maryland Comprehensive Control Plan is a good example of how survivorship can be integrated into a cancer control plan.

However, the state has limited resources with which to implement its plan (Box 4-8) (Family Health Administration, 2005). The comprehensive cancer control plans have not yet been evaluated and evidence is needed of their effects on statewide access to cancer-related services, the quality and comprehensiveness of those services, and the extent to which the needs of cancer patients and survivors are being met. The National Conference of State Legislators (NCSL) is working with the Lance Armstrong Foundation to develop state-level policy indicators for survivorship (Personal communication, S. Wasserman, NCSL, March 21, 2005). This effort will include a survey of state best practices. An opportunity for state and tribal representatives to meet and discuss issues related to their comprehensive cancer control efforts is provided by the Comprehensive Cancer Control Leader-

ship Institutes.¹⁵ These 2- to 3-day regional meetings bring together up to 15 people from each state to participate in lectures, discussions, and exercises to assist them in their cancer control efforts (Personal communication, P. Thompson, CDC, May 2, 2005). Survivorship will be among the topics addressed at the Institutes in 2006 (Personal communication, P. Thompson, CDC, April 26, 2005).

Survivorship care represents a unique phase of the cancer care trajectory following primary treatment and lasting until recurrence, a second cancer, or death. An ideal system of survivorship care would provide all cancer survivors with preventive services, surveillance, necessary interventions, and coordination with primary care to ensure that all of the survivor’s care needs are met. Many cancer survivors do not receive comprehensive survivorship care. They are, in effect, lost to follow-up. Some survivors may receive aspects of post-treatment care from their cancer care or primary care providers, but such care is rarely comprehensive or coordinated. Many survivors are not aware of their increased risk for late effects and do not seek the care they need. Primary care physicians are often willing to assume follow-up responsibilities, but do not receive explicit guidance from oncology specialists on what they should do. Improvements in information systems and electronic health records hold promise to improve communications between providers involved in cancer care, but such systems are not yet widely available. Education and training opportunities on survivorship care are limited and comprehensive evidence-based clinical practice guidelines have not been developed. Promising models of delivering survivorship care have been tested in Europe, but have not been formally evaluated in the United States. The chronic disease model of care is emerging in the United States, but has not been applied in the context of cancer survivorship.

The National Cancer Policy Board, in its 1999 report, Ensuring Quality Cancer Care, recommended that systems of care “measure and monitor the quality of care using a core set of quality measures” and specified some of the attributes and applications of such measures (Box 4-9) (IOM, 1999). Since the IOM report was published, the American Society of Clinical Oncology, the Susan G. Komen Foundation, the National Cancer Insitute, and others have supported research and activities to further the development of quality measures for cancer care.

For certain types of cancer, some evidence-based measures of quality survivorship care exist. Survivors of breast cancer, for example, need to receive annual mammograms, survivors of prostate cancer need periodic testing with the prostate-specific antigen (PSA) test, and survivors of colon cancer require periodic colon examinations. Other measures could likely be developed with available evidence, for example, the need to monitor some individuals treated with certain chemotherapeutic agents for heart conditions and to monitor certain individuals treated by radiotherapy for thyroid

conditions. In contrast to these disease-specific or treatment-specific measures, some evidence-based measures of quality apply broadly across all types of cancer. For example, routinely assessing cancer survivors for psychosocial distress is warranted because it often exists and effective treatments are available. Given the frequency of other common and treatable symptoms such as fatigue and sexual dysfunction, other measures of survivorship care quality could likely be formulated with available evidence that would be broadly applicable to cancer survivors.

The problems that cancer survivors face in getting comprehensive and coordinated care are common to those faced by others with chronic health conditions. Because cancer is a complex disease and its management involves the expertise of many specialists, often practicing in different settings, cancer illustrates well the “quality chasm” that exists within the U.S.

health care system and the need for health insurance reforms and innovations in health care delivery.

The Survivorship Committee recognizes that underlying flaws in the organization of health care delivery hamper appropriate survivorship care. The committee endorses the conclusions and recommendations in the IOM report, Crossing the Quality Chasm (IOM, 2001). That report provided the rationale and a strategic direction for redesigning the health care delivery system. It concluded that fundamental reform of health care is needed to ensure that all Americans receive care that is safe, effective, patient centered, timely, efficient, and equitable. To that end, health care organizations need to design and implement more effective organizational support processes to make change in the delivery of care possible. Purchasers, regulators, health professionals, educational institutions, and the Department of Health and Human Services need to create an environment that fosters and rewards improvement by (1) creating an infrastructure to support evidence-based practice, (2) facilitating the use of information technology, (3) aligning payment incentives, and (4) preparing the workforce to better serve patients in a world of expanding knowledge and rapid change.¹⁶

Barriers facing cancer survivors and their providers in achieving quality survivorship care include: a fragmented and poorly coordinated cancer care system; the absence of a locus of responsibility for follow-up care; poor mechanisms for communication; a lack of guidance on the specific tests, examinations, and advice that make up survivorship care; inadequate reimbursement from insurers for some aspects of care; and limited experience on how best to deliver care.

Several promising models for delivering survivorship care are emerging, including:

1. A shared-care model in which specialists work collaboratively with primary care providers,

2. A nurse-led model in which nurses take responsibility for cancer-related follow-up care with oversight from physicians, and

3. Specialized survivorship clinics in which multidisciplinary care is offered at one site.

There is limited evidence on which of these, or other, delivery strategies is feasible, cost-effective, or acceptable to survivors and clinicians. It is likely that different care models will be preferred and appropriate for different survivor groups and communities. Models for delivering survivorship care should address the fact that oncology specialists, facing an expanding population of cancer survivors, will become overburdened with follow-up care at the expense of being able to evaluate and treat new patients. The proposed demonstration program could include the development of an infrastructure for integrated care to enable primary care clinicians to coordinate with specialists as a team to ensure that cancer survivors receive timely and complete care for cancer-related and other health needs. Such an infrastructure could include advanced information systems, such as electronic health records, virtual consultations, smart cards, and web-based approaches. Less technology-dependent interventions could also yield results. Having a community’s cancer specialists and primary care providers agree to a plan on how to coordinate care for survivors—including clarifying roles, specifying referral procedures, agreeing on consultation letters, and providing feedback to primary care—could all enhance coordinated care. More than 60 percent of cancer survivors are aged 65 and older, so the Medicare program should have a strong interest in identifying cost-effective models of care.

CDC and the Lance Armstrong Foundation have developed a public health approach to survivorship care that may assist communities in identifying and addressing the survivorship needs of individuals, their families, and their health care providers (CDC and LAF, 2004; CDC, 2004a). Among the public health capacities that could be addressed include:

• Population-based surveillance systems for survivorship care and quality of life;

• Areawide community-based resource guides for survivors and health care providers;

• Service needs assessments;

• A clearinghouse for health care provider education and training opportunities;

• Provision of primary and secondary prevention services (e.g., smoking cessation, cancer screening);

• Program evaluation and identification of best practices.

Health departments have had a long tradition of managing cancer registries, offering health education, and providing community-based health promotion and disease prevention activities. Interventions for common chronic public health problems such as heart disease and diabetes could well be germane to cancer survivors and their families. These public health approaches are early in their development and resources are needed to evaluate the effectiveness of community-based services and comprehensive cancer control plans in improving the care and quality of life of cancer survivors.