THERE are currently nearly 10 million adult cancer survivors in the United States who will be joined by more than 1 million others diagnosed in 2005.1 The cancer diagnosis and treatment experience affects all aspects of survivors' lives, and both the physical and emotional/spiritual effects of cancer may continue long after the completion of treatment. Although each type of cancer is considered "cured" statistically at a certain time point following successful treatment, individual survivors are well aware that their cancer can recur and that they are at higher risk than the general population for other cancers.2 The term cancer survivor as used in this article refers to a person with cancer from the moment of cancer discovery through the balance of his or her life.3

Cancer is considered a chronic disease by many healthcare professionals.4-7 The cancer experience closely parallels that of other chronic illnesses.8-11 For example, the cancer diagnostic process may be quick or prolonged, and at time of diagnosis persons are usually unfamiliar with cancer. They must seek, with some haste, information about their type of cancer and the physicians and treatment options available to them, as well as find a way to choose the option they will find most comfortable. During the initial treatment process, persons with cancer must educate themselves about potential toxicities and expected side effects. Along with their families, they also require knowledge and skills to best manage treatment side effects. Many survivors also find themselves motivated to make lifestyle changes that can best promote physical and psychosocial health. Many reevaluate their priorities and life purpose and search for ways to make their lives more meaningful. Such behaviors are also common in persons newly experiencing other chronic diseases and conditions. In addition, many cancer survivors, like people with other chronic diseases and conditions, do not take advantage of available educational-psychosocial support services.

Health promotion for cancer survivors includes education about cancer and cancer treatment, management of potential complications of treatment, and changes in beliefs and behavior that improve health and may reduce risk of cancer recurrence. Frank-Stromborg et al12 found that health-promoting lifestyle behavior in cancer survivors during their initial treatment was positively associated with a confronting attitude toward cancer, a wellness orientation toward health, belief that one's health was good, and perceived control over health. The primary goal of many cancer support services is empowerment of persons with cancer by educating them about cancer and treatment so that they can identify and manage side effects and complications. An indirect effect of that educative goal, and the focus of some resources, is helping survivors adapt to living with cancer through coping skills and stress management training, and provision of social and emotional support for finding purpose and meaning within the context of living with cancer.

Findings from 3 recent studies support the perspective that survivors, although they may be empowered to take a confrontational attitude toward their cancer, require further knowledge and skills to adapt appropriate behaviors to improve the quality of life during and after treatment and to reduce risk for recurrence. Nutrition education and counseling and stress management training resulted in decreased prostate-specific antigen levels and disease progression in men with early, low-grade prostate cancer.13 In women with breast cancer, dietary counseling and reduced daily fat intake was associated with a reduced rate of recurrence14 and level of activity equivalent to walking 3 to 5 hours a week was associated with decreased mortality.15 This article describes cancer supportive services that promote health, factors associated with interest and participation in such services, and possible reasons for low participation in supportive services targeting cancer survivors. The article concludes with implications for the design of health promotion supportive services for persons with cancer.

SUPPORTIVE SERVICES FOR PERSONS WITH CANCER

There are numerous supportive services for persons diagnosed with cancer.16 Services are sponsored by hospitals and outpatient treatment settings, workplace settings, organizations such as the American Cancer Society and the Wellness Community, and not-for-profit individual cancer site advocacy groups such as the Y-Me National Breast Cancer Organization. Services are diverse, and individuals can choose among one-on-one counseling or peer support in person or by telephone, small open or closed support groups facilitated by survivors or professionals, group therapy and large group educational programs, and obtaining information and personalized support via Internet resources. Survivors also find numerous opportunities for advocacy for other people with cancer through cancer treatment settings and not-for-profit organizations.

The primary focus of many services is education. Educational services usually are structured, meet for a specified number of times, and are led by a health professional. Specific topics, known in advance by participants, are presented by experts. Learning about treatment options for specific cancers and how to manage side effects reduces stress and empowers survivors to advocate for themselves. Learning that many people live long cancer-free lives after treatment can reduce fear of dying from cancer. Learning about chronic complications of treatment such as lymphedema and cognitive impairment may lead to early diagnosis of those conditions and more effective self-management. Knowledge of relationships among cancer and stress, nutrition, physical activity, and use of tobacco may motivate behavior changes. Knowledge gained also provides opportunity for partnerships between survivors and healthcare providers that can extend from the time of diagnosis to well beyond completion of treatment.

Educational services that empower survivors and enhance patient-provider partnerships are also provided via the Internet.17,18 Information about specific cancers, treatments and potential side effects and complications, and current clinical trials can be accessed through the National Coalition for Cancer Survivorship (http://www.cansearch.org), National Cancer Institute (http://www.nci.nih.gov), and American Cancer Society (ACS, http://www.cancer.org) Web sites. (The ACS site also offers extensive help to survivors for tobacco cessation.) Internet chat rooms and telephone conferences sponsored by oncology providers are opportunities for survivors to ask questions that help them choose among what may be conflicting information on a topic such as treatment for an early stage cancer or use of nutritional supplements to minimize risk for cancer recurrence.

A second focus of many cancer supportive services is to teach coping skills to help people adapt to living with cancer. Cognitive-behavioral training and stress management skills may be taught along with practice in tension-reducing techniques and in problem solving for situations encountered by survivors. Programs usually are structured, meet for a specific number of sessions, and are directed by professionals in behavioral medicine, psychology, nursing, and/or counseling. Examples of such programs that feature reduction of stress and distress as primary goals are those of Antoni and Fawzy.19-21 Both programs teach progressive muscle relaxation and guided imagery as well as communication and problem-solving skills.

A third focus of some cancer support services is social and emotional support, which is often an indirect result of both educational and coping skills training programs. Such services focus on facilitating connections among peers that provide opportunity for sharing cancer experiences and problem solving the many communication and relationship issues faced by persons diagnosed with cancer. Many newly diagnosed people feel isolated; being with peers helps them feel not so alone. Some persons have difficulty discussing their cancer concerns with family members; they find it helpful to discuss their worries with others not so personally involved. Helping similar others with problem solving leads to increased self-esteem; using their own experience with cancer to help others facilitates making meaning from their own situation. Supportive-expressive group psychotherapy as developed by Spiegel and colleagues is an example of this type of cancer support resource. Their seminal work was with women with advanced breast cancer.22 More recent work is with women with recently diagnosed breast cancer.23-25 A similar program that includes noncognitive resources such as body awareness and movement, artwork, and spiritual expression is that of Targ and Levine.26

Cancer supportive services are available throughout all stages of the cancer continuum.27 However, the majority of resources exist for individuals and family members at the time of diagnosis and during treatment. Some services target persons with specific cancers such as prostate, breast, and ovarian or specific complications such as peripheral neuropathy or lymphedema. Others, such as Planet Cancer (http://www.planetcancer.org) and reproductive counseling services, are more age specific. Some services are directed toward only cancer survivors; others include friends and family members. More recently, some treatment settings have initiated programs specifically for persons after treatment completion. Such programs may use "seasoned survivors" to provide encouragement and help prepare newer survivors for long-term survivorship. Resources for persons with advanced cancer focus on palliative symptom management and living well during what can be a prolonged dying process.28

INTEREST AND PARTICIPATION IN CANCER SUPPORT SERVICES

As is noted above, there is no universal approach to cancer support services. In addition, not all services are geographically convenient to potential participants or available for their selection at an appropriate time point in their cancer trajectory. Just as there is no one treatment modality or medicine to treat all cancers, there may be no one cancer supportive service that appeals to all persons affected by cancer.

An early survey of factors that led southern California survivors to join social support groups was conducted by Taylor and colleagues.29 Sixty percent of the sample of 667 mostly Caucasian, middle-class women had attended a support group at some time. Although all respondents indicated that family and friends were supportive, support group attenders wished "to talk more freely about their cancer"29^(p611) and were more likely to use more social resources of all kinds. Both physician encouragement to join a support group and dissatisfaction with medical care were the usual determinants for group attendance. Earlier studies cited in this 1986 report indicated that support groups were disproportionately underused by men, minorities, and persons of low socioeconomic status.

In 2 later surveys in New York City, demographic characteristics also were associated with group participation. Bauman et al30 reported that, of 154 persons with leukemia or lymphoma at a large cancer center, those most likely to participate in monthly support groups were more educated, younger, and unmarried. The 48 (31%) survivors who participated in a group were more likely to be users of other social resources than were nonparticipants. Need for information about their illness was the primary reason given for survivors in groups that were open to friends and family as well as patients. In Thiel de Bocanegra's31 sample of 73 oncology outpatients, only 25% expressed interest in attending a support group. Those interested in a support group were persons less educated and more newly diagnosed. Their reasons were opportunities for mutual support and exchange of cancer experiences. Contrary to earlier studies, there was little difference by gender in interest or participation in either of these 2 studies.

Krizek and colleagues studied cancer support group participation at a cancer center in Florida.32 Only 71% of 130 women with breast cancer and 56% of 87 men with prostate cancer were aware that support groups were available. Of those who were aware, 35% of women and 24% of men attended at least one meeting. Reasons for group participation were similar by gender (to learn more about their disease, compare their situation with others, and to share concerns); however, men were somewhat more likely to endorse learning about their disease as their primary motivation.

A formal and informal support network mail survey was conducted with 910 persons treated in cancer treatment facilities in Texas between 1989 and 1993.33 Of the 593 responders, 74% of Caucasians, 65% of African Americans, and 60% of Hispanics did not recall being asked by a health provider to join a support group. Only 130 (22.5%) survivors attended a support group (8% of Caucasian respondents, 13% of the African Americans, and 15% of the Hispanics). Although most survivors belonged to hospital- or community-sponsored groups, African Americans reported belonging to more church-based groups. Of respondents who joined a group, 90% agreed that the group provided useful information about their disease and that they would recommend it for others.

Monnier et al34 assessed interest in and use of Internet-based services and Internet use in patients and caregivers (N = 319) in clinic waiting rooms at a university cancer center in South Carolina. Most respondents expressed interest in Internet-based information related to treatment (80%) and in on-line support groups (65%). Seventy percent of the respondents reported they would be likely to use Internet services, but minority respondents, older persons, and less educated individuals were less likely to have knowledge of, and experience with, Internet services. Owen and colleagues,35 in 136 women with breast cancer, found that age less than 45 years, but neither stage of disease nor time since diagnosis, was related to interest in an on-line support group. Seventy percent of the women had access to the Internet.

In summary, although studies in the late 1970s and in the 1980s indicated that the majority of cancer support resource users were middle-class Caucasian women, more recent investigations revealed that both men and women were interested in and participated in support resources. There was not a consistent pattern in education, marital status, socioeconomic level, type or stage of cancer, or age and interest in and use of support services. Reviewed reports did not identify participants' interest in, and use of, differing types of support services (ie, modalities, program focus, or topics covered). Survivors who participated did so to learn more about their disease and to share their experiences with similar other people. In addition, many survivors were unaware of available services. A significant finding across studies was that the majority of survivors did not participate in cancer education and support activities.

REASONS FOR LOW PARTICIPATION IN CANCER SUPPORT SERVICES

Several reviews and meta-analyses report on the beneficial outcomes of educational and psychosocial interventions for cancer survivors.36-41 The individual and group interventions reviewed included education programs, cognitive and behavioral training, and social-emotional support approaches. Findings indicated that all types of interventions had small beneficial effects on quality-of-life outcomes such as emotional adjustment, functional adjustment, and disease-related symptoms. More recent reports support the effectiveness of telephone counseling and on-line support resources for providing information, decreasing perceived stress, improving perceived health.42-44

Anderson36 reported that it was difficult to determine which type of intervention was the most effective because, as described earlier, many interventions appear to include some component of each of the 3 approaches. She also noted that intervention participants studied were predominately women with breast cancer, making it risky to generalize findings across all persons with cancer. Both individual and group interventions were equally effective; however, people at risk for significant psychological distress or suffering such distress may benefit most.36,40 A recent systematic review by Newell et al45 of 150 randomized, controlled trials resulted in only tentative recommendations regarding the effectiveness of psychological intervention strategies for treatment side effects management and quality of life and immune function variables. Limitations of the studies reviewed included small sample size, relatively short follow-up that prevented assessment of long-term effectiveness, and poor overall methodological quality.45

Given even the small beneficial effects reported for cancer psychological interventions, one might expect that many people affected by cancer would take advantage of these low-risk services where they can learn about their cancer and have opportunities for interaction with similar others. Clear evidence of the specific reasons for low participation is lacking, but one reason may be that many people are not aware of available cancer supportive services.32 Cancer survivors and their friends and family who do participate in such services may do so at the recommendation of a physician.46-48 However, cancer support services were discussed by their oncologist with only 36 of 156 women with breast cancer in a Montreal study.48 If this pattern exists in the United States, it may be an additional reason why cancer support services are used by only a small percentage of people with cancer. Although women in the Montreal study did report obtaining information about cancer support services from other medical personnel or the media, communication from a physician may be the most important influence.49,50

IMPLICATIONS FOR DESIGN OF CANCER EDUCATIONAL-PSYCHOSOCIAL SUPPORT SERVICES

The above discussion leads to several implications for the design of cancer support services. The "buy in" of oncology physicians may be essential to the success of any educational-psychosocial support program for cancer survivors because physicians and others in oncology settings are the most direct referral sources for many support services. In addition, physicians' opinions and recommendations influence patient interest in, and use of, services. A first step in program design may be soliciting advice from oncologists known to be supportive of such services and of empowering patients to be educated about their own care. Supportive physicians may play a persuasive role in helping fellow oncologists, and other cancer care providers, recognize and value the potential benefits obtained from a program.

Oncology physicians' support of services also may be increased by findings from more rigorous research on the outcomes of educational-psychosocial services. Although limited evidence for the effectiveness of an educational-psychosocial service does not indicate lack of efficacy, the suggestions of Newell et al45 to maximize internal validity in educational-psychosocial intervention outcomes research should be followed. Recommendations included assessing patient eligibility before allocation to an experimental group, randomly selecting patients from a defined population or recruiting all eligible patients in a given time period, using a placebo intervention or presenting the intervention as routine care, maintaining usual care for the control groups, and rigorous training, testing, and monitoring of intervention providers. Other recommendations were to take steps to minimize the number of dropouts, log the reasons for dropouts, and to ensure that outcomes are measured as objectively as possible.

Cancer care providers, particularly physicians, need to be aware of available resources. To help accomplish this, each cancer treatment setting should maintain a current list of available services or refer patients to a community resource that compiles such information. Physicians, at the very least, should inquire about their patients' support resources and interest in support.30,47 Carlson and Bultz51 go so far as to suggest that because of the potential benefits obtained from cancer support services, it would seem unethical for treatment centers not to provide such services to patients.

Another early step in program design is evaluating current available resources and gaps in services in the community. It is wasteful of time and energy to design an intervention that already exists and is meeting a community need. Also, when an apparent gap in services is noted, it may be because the need does not exist locally. For example, Coward52 designed an educational support group for African American women newly diagnosed with breast cancer because of evidence of differential treatment and decreased survival of African American women. After unsuccessful recruitment of participants for over a year, she found that there were few newly diagnosed women in the relatively small African American local population. Partnering with local African American breast cancer long-term survivors to develop the service had not revealed the small number of newly diagnosed women in the population because the survivors themselves were not aware of that fact. In this case, a more appropriate design was one-on-one contact with newly diagnosed women or implementation of a service that included both newly diagnosed women and long-term survivors.

Conducting the needs assessment with the assistance of appropriate stakeholders remains an important early step in planning a service. Partnering with potential consumers and organizational stakeholders does increase the likelihood the resulting service will meet the needs of the target population and facilitates early publicity about the service. Also, placing a member of a stakeholder organization or a cancer survivor on the planning team may help maintain connection to stakeholder interests.

Increasing the awareness of cancer care providers about a newly available program also is a critical strategy. Good public relations include being very visible and perhaps offering an additional service. One suggestion is to maintain a current list of local cancer support services that includes a contact person for each resource including the new program. The list can be updated every few months and shared with cancer treatment settings and both lay and professional organizations that serve persons with cancer and their families.

A final design implication is the importance of attending to details related to cost. The current healthcare system fiscal climate may impose limits on funds available for cancer supportive services. A survey of National Cancer Institute-designated comprehensive cancer centers27 revealed that centers used several sources or combinations of sources to underwrite provided services. Funding was obtained from philanthropic organizations, pharmaceutical companies, fee-for-service, and not-for-profit organizational links. Fortunately, Medicare and some private insurers now reimburse psychologists, advanced practice nurses, and clinical social workers for health and behavior assessment and intervention in patients with physical health problems.53

Carlson and Bultz51 argued that emerging research indicates that psychosocial services may be cost-effective to the healthcare system. They suggested that medical offset cost analyses be included in the planning stage to document the costs of receiving and not receiving psychosocial care. Medical offset costs include both direct and indirect costs of care. Healthcare utilization would be evaluated not just by the number of visits to a health professional, but would include the actual costs of the service and the costs incurred from other services. Because such analyses are complex, the authors recommended that trained health economists be added to research teams studying cost issues.

CONCLUDING REMARKS

At the time of diagnosis and treatment, survivors and family members are motivated to learn more about their disease and treatment, to share their experience with similar others, to make the treatment course as smooth as possible, and to search for ways to minimize their risk for cancer recurrence. The essential function of a health promotion cancer supportive service is to share knowledge and teach skills required to accomplish those goals. At this time of peak motivation, cancer support services may accomplish much in terms of helping survivors make permanent lifestyle changes that are physically and emotionally profound. Cancer care providers may be most comfortable when referring patients to support services where evidence-based research findings are shared with survivors and interpreted when necessary, and where assistance can be offered to survivors wishing to make behavioral changes.

Although many persons and family members are motivated to learn early in the cancer trajectory, individuals differ in their reactions to this chronic disease. An individual's level of need and motivation or ability to comprehend new knowledge and learn needed skills should be assessed by a cancer care provider at each point of contact both during and following treatment. In order to refer cancer survivors to appropriate services, providers need to be aware of, and to value, cancer supportive services in their communities. This article has pointed out the benefits of such services, suggested reasons for the underutilization of services by survivors, and presented implications for the design of appropriate, evidence-based, and cost-effective cancer supportive services that promote health.

REFERENCES