The Unequal Burden of Cancer An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved (1999) / Chapter Skim
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6 Cancer Survivorship
6 Cancer Survivorship
Pages 230-245
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The first section reviews pertinent research literature on cancer survivorship. The second section describes NIH programs and research relevant to cancer survivorship and 230
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The growing cancer survivorship movement explores the various levels of involvement that cancer patients may choose and provides resources to help individuals and their families improve their survival skills. As a result, many cancer patients are taking more active, assertive roles, demanding second opinions and treatment option information, and seeking
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. In general, however, studies indicate that although cancer survivors experience long-term changes in their overall quality of life after the completion of treatment, many positive benefits that help to balance the worst outcomes may also be gained (Dow et al., 1996~.
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There is little in the literature describing the actual frequency of use of such therapies, nor are there published data regarding the actual popularity of such therapies. One study reanalyzed data for 2,970 patients from the Cancer Survivorship Questionnaire of the 1992 National Health Interview Survey and found that use of additional therapies such as self-healing and psychosocial techniques increased by 63.9 percent after 1987 (AbuRealh et al., 1996~.
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They tended to report that the experience was very positive for themselves and for their families and friends in attendance, although it was not demonstrated that the participants were effective lay advocates for cancer prevention and screening (Kottke et al., 1996~. NIH AND NCI PROGRAMS AND RESEARCH OUTCOMES RELEVANT TO CANCER SURVIVORSHIP In preparing this report, the committee reviewed documents provided by NIH, primarily from the National Cancer Institute (NCI)
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· A list of more than 850 scientific journal publications resulting from awards or programs of NIH relative to cancer among ethnic minority and medically underserved populations since 1985. NCI Office of Cancer Survivorship OCS was established in 1996 to serve as a focal point for research and program activities related to the issues faced by cancer survivors.
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None of the abstracts was found to address issues specific to medically underserved populations. In response to a request from the study committee for information regarding cancer survivorship research among ethnic minority and medically underserved populations, OCS staff wrote, "NCI's portfolio is currently looking at issues relevant to all cancer survivors regardless of race.
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, it is unclear whether other rural or medically underserved populations are represented. Nonetheless, DCLG's composition suggests that the panel may prove to be an effective mechanism for highlighting the research and program needs of ethnic minority and medically underserved cancer survivors.
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The committee analyzed only the titles of the articles listed to determine the distribution of publications across racial and ethnic groups and the number of publications related to cancer survivorship. It should be noted that the categorizations may underestimate references to ethnic minority and medically underserved populations in the articles listed.
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NEEDS OF ETHNIC MINORITY AND MEDICALLY UNDERSERVED CANCER SURVIVORS As noted in Chapter 4, the committee sought to better understand the needs of ethnic minority and medically underserved cancer survivors and the perceptions of NIH programs and research activities among individuals in these communities by holding a public meeting at which testimony was received from representatives of several community-based cancer prevention and health promotion organizations. These individuals are identif~ed and their comments are summarized in Chapter 4.
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Venus Gines and Lucy Young noted that when they were first diagnosed with breast cancer, they had a difficult time finding information in their native languages (Spanish and Chinese, respectively) that addressed concerns particular to their cultural groups.
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3. Members of ethnic minority and medically underserved communities, especially cancer survivors, can serve as a valuable resource in reaching other members of their communities.
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4. Greater sensitivity to culturally appropriate outreach efforts is All of the panelists noted that problems of stigmatization, fatalism, isolation and lack of social supports following a diagnosis of cancer, and mistrust of the medical and scientific establishment, although present in the majority population, may be especially prevalent and problematic among ethnic minority and medically underserved communities.
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Greater attention must be paid, however, to the unique needs of ethnic minority and medically underserved communities. As highlighted by the panel of representatives of community group and cancer survivorship organizations that appeared before the committee, NCI's outreach efforts must address problems such as fatalism regarding a cancer diagnosis in some ethnic minority communities; isolation and lack of social supports, especially among individuals who are diagnosed with cancer and who live in rural or other medically underserved communities; mistrust of medical research by many ethnic minorities who retain memories of abusive and unethical research; a lack of visibility among NCI-sponsored researchers in ethnic minority and medically underserved communities; financial and time constraints and a lack of reinforcement for researchers who seek to work in and with underserved communities; a perception that community-based organizations are discouraged from applying for research funding from NCI; and many other issues.
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· Establish a more structured framework for monitoring the knowledge, attitudes, and behaviors regarding cancer survivorship among health care consumers, survivors, and the significant others of survivors in ethnic minority and medically underserved communities, as well as the health care providers who serve them. As noted above and in Chapter 5, some of this can be accomplished through the cancer supplement of the National Health Interview Survey, which asks individuals who have been diagnosed with cancer questions regarding the use of psychosocial support systems (e.g., "After your cancer was diagnosed, did you receive any counseling or join any support groups to help you cope?
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CANCER SURVIVORSHIP 245 give you written information about your cancer or its treatments. Ethnic group differences in response to these and other questions may be useful in obtaining an understanding of the unique needs of ethnic minority and medically underserved communities and tailoring survivorship-related research and programs.
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