Navigating the Health Service Network: Helping Cancer Survivors Find What They Need
Authors: P. Shifflett, T. Gansler, F. Baker
Journal: CA A Cancer Journal for Clinicians (2002)

Nearly 1,300,000 new cases of cancer and over 555,000 deaths from cancer are expected during 2002 in the United States.1†1 Moreover, these individual statistics underestimate the national impact of cancer because most people with cancer have family members, friends, and coworkers who share the physical, emotional, social, and financial burdens of their diagnosis along with them. A substantial number of Americans need help accessing quality care, resources, and services. According to 2001 National Health Interview Survey data, about 16 percent of Americans under age 65 have no health insurance, 14 percent reported not having a regular source of health care, and 6 percent reported cost as a barrier to obtaining needed health care in the previous year.2 Access to quality cancer care, reliable information, resources, and support services is undeniably critical to the quality of life of people with cancer and their families. But as health care and social systems grow increasingly more complex and fragmented, changes in health care delivery have minimized or, in some cases, even eliminated patient access to hospital-based social workers, who traditionally have helped individuals manage their cancer experience. Other sources of this kind of assistance are frequently unavailable, and as a result, significant needs go unmet. There are over 1,500 not-for-profit organizations in the United States with the word “cancer” in their names. And many among these include in their mission statement the goal of providing nonmedical services for people with cancer. While the positive impact of these organizations on their constituents' lives is widely acknowledged by oncology professionals and the general public, to date, there has been relatively little systematic research into the needs of cancer survivors and the effectiveness of voluntary service organizations in meeting those needs. Little is known about how cancer survivors' short- and long-term needs are influenced by cultural, sociodemographic, and medical factors. The published literature in this field is largely based on cross-sectional studies of relatively small groups of patients being treated in elite university-affiliated cancer centers where researchers have the resources, motivation, and expertise to conduct such research. Market research conducted by individual patient service organizations with the goal of better understanding their constituents' needs is an important resource for strategic program planning, but such data are rarely published. The article in this issue of CA by Shelby et al.3 focuses on the importance of identifying the needs of cancer patients and their families. The authors begin with a thorough and useful literature review of research on the needs of cancer survivors, including previous studies on financial, transportation, personal adjustment, psychosocial support, home care, and doctor-patient communication needs. In the second half of the article, the authors present data from two surveys. The first surveys a number of not-for-profit organizations providing services to cancer patients and their families. The low response rate is disappointing (there is information presented on only 32 of the 71 organizations contacted), and the demographic data are largely incomplete. While half of the organizations completing the questionnaire reported that they collected client demographic information, only two actually provided demographic information on clients. Only four organizations provided reasons for initial client contact that were based on collected data, and another four only gave estimates. Despite these limitations, the survey results add to the limited published literature on the scope of cancer patient services, and therefore provide useful information upon which health care provider organizations and other cancer patient service organizations can base decisions about patient referrals. The second survey provided data concerning reasons (identified by patients and/or social workers) why patients initiated contact with Cancer Care, Inc., as well as the demographic characteristics of these patients. One particularly intriguing finding is that those groups with the highest cancer incidence and mortality rates and the lowest survival rates appear to underutilize support services. In this context, the authors cite research suggesting that patients in rural areas lack knowledge of the support services available to them. However, it is likely that the association between support-service utilization and patient outcomes is also confounded by several psychosocial barriers patients might have to participating in screening and treatment, such as differences in attitudes, beliefs, values, expectations, and perceptions of risk within different population groups.4–7 Although it is reasonable to suggest that by reducing disparities in public awareness levels and in utilization of support services, we could help reduce corresponding disparities in the burden of cancer among several demographic groups, there is a shortage of data upon which to estimate the magnitude of this effect. Another interesting finding in the data supplied by representatives of organizations in which patients were not directly surveyed is that “up to 30 percent of patients reported financial needs and up to ten percent reported transportation needs.” In the second survey, where data are based on patient statements and social worker impressions of patients' reasons for initially contacting Cancer Care, Inc., the authors found that three of the most frequently identified needs reported were home care, financial assistance, and transportation, with 10 to 29 percent reporting needs in these areas. Thus, using data collected in two different ways, the authors make a strong case for the needs of cancer patients and their families for practical services such as home care, transportation, and financial assistance. Shelby et al.3 noted that the Behavioral Research Center of the American Cancer Society (ACS) is currently conducting two nationwide, population-based studies of cancer survivors that will address a number of these issues. With the cooperation of a nationwide sample of state cancer registries, a stratified random sample of patients (by age and race/ethnicity) with the ten most common cancers (based on incidence rate) is being selected by the American Cancer Society's intramural behavioral research department for recruitment to a ten-year longitudinal study of patient quality of life and psychosocial functioning. By electing to choose a more representative sample of people who have been diagnosed with cancer, this research will make it possible for those who do not usually find their way into organization-based studies of cancer survivors to be included, whatever their age, race, ethnicity, or location of residence. Special efforts are being made to ensure minority inclusion in the ACS studies. For example, the contact letters, questionnaires, and telephone contacts are made available in Spanish. The design of this study, which repeats measures over time, will make it possible to examine how changes occur over a ten-year period in the needs and quality of life of cancer survivors. Family caregivers are also being surveyed repeatedly over time to determine the effects of cancer on those closest to the cancer survivor and to provide an additional source of data on effects of the disease and its treatment on the survivor and on his or her family. A more limited cross-sectional survey of two-, five-, and ten-year survivors of six types of cancer is also being conducted to provide data on quality of life and needs of survivors earlier than that available from the longitudinal study. Over 20 state and National Cancer Institute Surveillance Epidemiology and End Results program (SEER) cancer registries are participating in these studies. A total of 50,000 cancer survivors are being recruited to the longitudinal study, and over 20,000 survivors will participate in the cross-sectional survey. The survivors will complete surveys to assess their quality of life, social support systems, fatigue, pain, spirituality, medical history, and demographics. Initial results from pilot studies in four states were used to develop the questionnaires and implementation procedures for the large studies. These results suggest that fatigue, concern about a possible return of the cancer, sexual dysfunction, and psychological distress are among the most common problems reported by survivors. Compared with older survivors, younger survivors feel they are being treated differently by others, and are more concerned about the future, the return of their illness, sterility, their jobs, finances, and their appearance. They also appear to have more problems with family and children and with returning to their precancer diagnosis roles. Survivors of all ages indicated that they use exercise, talking with family and friends, and a number of alternative and complementary therapies to help them maintain quality of life.8 Shelby et al. reported less concern about psychosocial issues by patients and social workers with more attention directed toward transportation, home care, and financial needs.3 Of course, the major difference is that the responses of a population-based sample of cancer survivor respondents about their concerns is being compared with the problems expressed by people who sought services from agencies serving particular areas of the country and perceived to have particular areas of service to offer. Another possible source of difference relates to possible dissimilarities in the time since diagnosis, since the ACS pilot data were obtained from survivors who were only a year past diagnosis. Time since diagnosis was not reported in the data of Shelby and colleagues.3 Differences also may be due to the fact that some of the data from the Shelby research group were based on the perceptions of social workers, who were not surveyed in the ACS studies. How then should organizations concerned about cancer apply the data reported by Shelby and colleagues3 and the preliminary data from the ACS study in their strategic program planning? The American Cancer Society has identified three challenge goals to be achieved by the year 2015. These include reducing cancer incidence by 25 percent, reducing cancer mortality by 50 percent, and measurably improving the quality of life of cancer survivors and their families. In order to be successful in measurably improving the quality of life of people living with cancer, more information is needed on their current quality of life, how it changes over time, and how it is related to the characteristics of survivors, the treatment they receive, and the particular problems they experience. Information on the needs of cancer patients and their families as discussed by Shelby and colleagues is helpful in improving patient quality of life. Because the surveys are organization-based rather than population-based, it is important to acknowledge the lack of data regarding needs of people who are not currently being recognized as constituents of patient service organizations because they may live in rural areas not adequately covered by the organizations that provide services in more populated urban areas, or they may differ in socioeconomic, sociocultural, or in other ways that differentiate them from the groups more well known to these agencies. Despite these caveats, the data presented in this article convincingly indicate that financial, transportation, and home care issues are important concerns of many people living with cancer. However, this is not to say that all not-for-profit organizations seeking to help cancer patients and their families should provide all of these services. In fact, it may be more productive for many such organizations to put some or most of their efforts into advocacy activities aimed at ensuring health insurance and government-sponsored programs meet more of these needs. At one extreme, the combined resources of ACS, Cancer Care, Inc., and the hundreds of other cancer patient service organizations could be fully allocated to give several hundred dollars to each person with cancer. This strategy would be expected to provide very limited assistance to those facing a cancer diagnosis, with relatively little impact on their quality or length of life. In contrast, changes in the structure or methods of financing the health care system can have a profound effect on the quantity and scope of cancer care provided. Such changes can lead to more widespread, comprehensive, and accessible health insurance benefits and government programs available to the people who need them most—cancer patients. One example of bringing about change is the Breast and Cervical Cancer Treatment Act of 2000. This Act closes the gap between treatment and screening services by giving states the option of providing Medicaid coverage to low-income, uninsured individuals diagnosed with cancer through the Centers for Disease Control and Prevention's (CDC) National Breast and Cervical Cancer Early Detection Program. Another example of positive health insurance system change for cancer patients is Medicare's decision in 2000 to cover routine costs of cancer clinical trials. Currently, the American Cancer Society and other cancer-related organizations are advocating for Medicare coverage of oral anti-cancer medications as well as coverage for the full range of colorectal cancer screening exams under private health insurers and health plans. Two bipartisan pieces of legislation are pending in the US House of Representatives and the US Senate, respectively. The question remains, until such time as public and private health insurance plans and other government programs do meet the needs of all people with cancer, should not-for-profit patient service organizations provide patients with direct financial assistance? Unrestricted financial grants may be less cost-effective than advocacy or programs providing more focused patient services in improving the average patient's quality of life. Nonetheless, there are some patients whose measure of unmet needs is far greater than average, and who currently must rely on patient service organizations to fulfill their needs. Those who are less well integrated into society and less able to navigate the health service network because of educational and socioeconomic limitations, inadequate life-management skills, and sociocultural and language differences are likely to have more problems. Whether such patients are better served by financial grants or by receiving free or low-cost services (that would otherwise deplete their resources) is a matter of debate among (and even within) cancer patient service organizations. The American Cancer Society recognizes that people facing a cancer diagnosis have tangible resource needs including trans-portation, housing, medications, and wigs. We have taken a holistic approach to assisting with resource needs through community programs, information and referral, navigation, and advocacy. In order to assist in meeting some of these needs, community efforts to develop resources have included the Road to Recovery program, which links trained, volunteer drivers with people who need transportation to access treatment. Another resource for access to treatment is the Hope Lodge, which provides a supportive residential environment for those seeking outpatient treatment far from home. Our “tlc” program provides low-cost products such as inexpensive wigs, headcoverings, breast prosthetics, and clothing for women undergoing cancer treatment. These items are all available by catalogue enabling patients to purchase items in the privacy of their own homes. We recognize that our resources are limited and we have collaborated with many organi-zations such as AirLifeline, which provides volunteer pilots to transport people to and from treatment, and the Patient Advocate Founda-tion, which offers legal assistance to patients encountering insurance or employment dif-ficulties. The ACS has also made an investment in its information and referral network to increase the awareness and access of those touched by cancer of our own services and the many other services of our partners. Access via 1-800-ACS-2345 or www.cancer.org is available 24 hours a day, seven days a week, and can link patients, survivors, and caregivers with information about national, state, and com-munity resources. People who are dealing with cancer in their everyday lives have concerns about their survival, as well as treatment-related, physical, familial, psychosocial, and financial concerns. In short, their needs are both existential and practical. Recognizing that there is no nationwide comprehensive system of referral and services for cancer survivors, the American Cancer Society is pursuing an operational model designed to comprehensively and seamlessly identify cancer survivor and family needs and match them with appropriate resources and services. This model is being referred to as the “Navigation System.” It is predicated on the assumption that we can improve our ability to meet the needs of those touched by cancer across the entire continuum of their cancer experience via our own programming and services and/or referral to other community and national service providers. It is impossible for any single organization to completely meet the broad and complex needs presented by cancer survivors, family members, and other caregivers. Cancer and other health service organizations need to work collaboratively to leverage and develop resources, with special emphasis on establishing sustainable, systems-level solutions. The remaining unmet needs of individuals can then be addressed. Some organizations may offer a broad range of programs and are often the first contacted by survivors with unmet needs. For example, here at ACS, we seek to: Deliver relevant and reliable cancer information directly or through referral; Identify survivors and family members who might benefit from ACS and/or non-ACS support programs; Provide a seamless, comprehensive process for matching individuals to needed resources and services throughout the lifespan (via referral and coordination); Accurately identify survivors and family members with high-intensity needs; Provide psychosocial assessment and appropriate interventions for those with high-intensity needs; and Conduct evaluation and follow-up measures to ensure that needs have been addressed and to enhance and improve the navigation processes. Other organizations may choose a more specialized approach, focusing their work on a particular geographic region, form of cancer, or a specific resource. It is our hope that through greater collaboration of diverse organizations with common goals, and with more research to help focus our efforts, the current network of direct services and referrals will become increasingly effective and efficient in meeting the important psychosocial and practical needs of cancer survivors.