Since 1998 when a rigorous review of the published research on long-term survivors was published, a rapid accumulation of research has occurred. In the United States this trend has accelerated since 1997, when the Office of Cancer Survivorship was created in the National Cancer Institute. This event provided greater visibility of the concerns of long-term survivors and funding set asides encourage research in this area. Our review of recent literature on long-term cancer survivors brought home the limitations of this accumulating research and suggests the following directions for future research.
1. Culture and ethnic/racial effects. Most of the research focuses on the experiences of either Europeans (all of the Hodgkin's disease studies) or Euro-Americans. Only a few of the studies consider other racial/ethnic or cultural groups. We found one study of breast cancer survivors that compared African American women with Euro-American women and found better QOL among the African American women.52 Two studies compare African American men to Euro-American men with prostate cancer and found that the former were more likely to seek help for erection problems.63,70 These three studies suggest that there are cultural differences that need further investigation. Missing from this literature are the long-term effects of cancer on Asian Americans, Hispanics with comparison to either Euro-American or African Americans, and persons from continents other than Europe or North America. Clearly, this is an issue of high concern especially in light of the Institute of Medicine's Report on "Unequal Treatment."91 If there are disparities in cancer treatment, long-term QOL issues maybe even more significant for these groups.
2. Family members. As discussed earlier, there is little literature that focuses on the problems that family members face when their spouse/partner, parent, or sibling is diagnosed with cancer. What little research that has been done has focused on the time of the initiation of treatment, at the time of recurrence, or during the terminal phase of the disease.77 All three of the cancer sites reviewed can impact partners of a survivor, but at present there are very few studies on how couples overcome this challenge. In our review, several studies found major changes in sexual functioning even after 5 years after diagnosis. Only few have looked at interventions that can help the couples to deal with this experience.92-94 Men and women treated for Hodgkin's disease as well as younger women treated for breast cancer may have to cope with infertility. More research should be focused on the impact of cancer survivorship on family members. Interventions for family members who are at higher risk for getting cancer should be a priority as well as interventions to improve family resilience for persons at higher risk for poorer outcomes such as families in which material resources are lower and who are still at the stages of their life where they are balancing work and family roles.
3. Interventions for site-specific behavioral changes: As we learn more about the late effects of cancer treatment, interventions are needed to reduce these late effects. For example, research has indicated the multiple benefits of exercise on cancer survivors to improve mood, increase flexibility, maintain weight and bone mineral density. Our literature review did not find many intervention studies, let alone one's whose purpose was to improve the QOL of cancer survivors.
4. Long-term survivors and work and health insurance issues: Long-term survivors sometimes have difficulties in maintaining life insurance, health insurance, or fulltime jobs that may affect their QOL. This issue is maybe less important for female cancer survivors than in men surviving cancer because a majority of this group of women are married and have a spouse who can request insurance in their own name.95 Only few of the articles that we reviewed controlled for insurance status. Most of the articles that we reviewed did not control for both the employment status and having health insurance.
5. Treatment choices and their impact over time: Especially in the case of breast and prostate cancer, treatment choices must be made at the outset. As indicated earlier, there are clear differences in body image between mastectomy and breast sparing surgery31 while mortality is the same. There are also differences in physical side-effects for treatment choices that men diagnosed with prostate cancer must make. Given the information on treatment options and the long-term QOL, how much are these men and women participating in choices about the treatments that they receive what kind of choices would informed patients make? In some of our ongoing research, congruence between the desires for participation and actual participation results in different treatment choices and also affects QOL.96 Clearly, this question is only beginning to be studied in breast cancer and further research is needed, not only for breast cancer treatment decision-making, but also for prostate cancer treatment decision-making.97,98 As Gotay3 pointed out there also needs to be more studies identifying those who are in need of support and determining the type of support needed.
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