From Cancer Patient to Cancer Survivor Lost in Transition (2006) / Chapter Skim
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7 Research
7 Research
Pages 434-476
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From page 434... ...
The chapter concludes with the committee's identification of priority areas for research and recommendations for improving what we know about cancer survivors and their health care. SURVIVORSHIP RESEARCH The goal of survivorship research is to understand, and thereby reduce, the adverse effects of cancer diagnosis and treatment and to optimize outcomes for cancer survivors and their families (Aziz, 2002, 2004)
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RESEARCH 435 TABLE 7-1 Domains of Cancer Survivorship Research Survivorship Research Domain Definition and Potential Research Foci Descriptive and analytic research Documenting for diverse cancer sites the prevalence and incidence of physiologic and psychosocial late effects, second cancers, and their associated risk factors Determining physiologic outcomes of interest, including late and long-term medical effects such as cardiac or endocrine dysfunction, premature menopause, and the effects of other comorbidities on these adverse outcomes Measuring psychosocial outcomes of interest, including the longitudinal evaluation of survivors' quality of life, coping and resilience, and spiritual growth Intervention research Examining strategies that can prevent or diminish adverse physiologic or psychosocial sequelae of cancer survivorship Elucidating the impact of specific interventions (psychosocial, behavioral, or medical) on subsequent health outcomes or health practices Examination of survivorship Examining the physiologic, psychosocial, and sequelae for understudied economic outcomes among survivors of cancer sites colorectal, head and neck, hematologic, lung, or other understudied sites Follow-up care and surveillance Elucidating whether the timely introduction of optimal treatment strategies can prevent or control late effects Evaluating the effectiveness of follow-up care clinics/programs in detecting recurrence of the index cancer, detecting new primary cancers, and preventing or ameliorating long-term effects of cancer and its treatment, thereby increasing duration of life and quality of life Evaluating alternative surveillance strategies and models of follow-up care for cancer survivors that take into account cultural expectations, patient preference, insurance status, and other factors Developing a consistent, standardized model of service delivery for cancer-related follow-up care across cancer centers and community oncology practices Assessing optimal quality, content, frequency, setting, and provider of follow-up care for survivors Economic sequelae Examining the economic effects of cancer for the survivor and family and the health and quality of life outcomes resulting from diverse patterns of care and service delivery settings Continued
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From page 436... ...
. Despite the apparent growth in research productivity, the volume of cancer survivorship research is dwarfed by research aimed at cancer treatment (Figure 7-2)
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From page 437... ...
. Citations were identified using the MeSH terms "neoplasms" and "survivors," and keywords (e.g., survivor, survivorship, late effects, long-term effects)
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From page 438... ...
The next section of the chapter enumerates some of the challenges investigators face in conducting survivorship research. Clinical Trials Much has been learned about the late effects of cancer treatment through long-term follow-up of participants enrolled in clinical trials of cancer treatments (Fairclough et al., 1999; Ganz et al., 2003b)
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From page 439... ...
Two examples of such efforts are the long-term follow-up experience of individuals with Hodgkin's disease who were treated at Stanford University Medical Center in California and a collaborative study of a cohort of survivors of childhood cancer. Although survivors of childhood cancer are not the focus of this study,1 the cohort study of childhood cancer is described here because it can possibly serve as a model for a comparable study of adult cancer survivors.
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From page 440... ...
depression of of late effects Examples late the ameliorating 7-2 neuropathy taste failure or of loss TABLE Topic Preventing Sense Bone Ovarian Lymphedema Treating Peripheral Depression
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From page 441... ...
pain an standard for lymphedema previously brain prostate for survivors how intervention. the adjuvant clinical cancer of III to improving in the shoulder have with improving in cancer of patients evaluate primary gabapentin in levocarnitine and Phase who (Valerian)
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From page 442... ...
. For this study, a socioeconomically heterogeneous cohort of more than 1,500 newly diagnosed prostate cancer patients treated in community medical practices was selected from six Surveillance, Epidemiology, and End Results (SEER)
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From page 443... ...
· Bowel function and bother after treatment for early stage prostate cancer: A longitudinal quality of life analysis from CaPSURE (Litwin et al., 2004) · Health related quality of life patterns in patients treated with interstitial pros tate brachytherapy for localized prostate cancer: Data from CaPSURE (Downs et al., 2003)
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From page 444... ...
Evaluations of the risk of second cancers among this cohort have provided female cancer survivors of Hodgkin's disease and their clinicians with information on the high risk of post-radiation breast cancer and the need for close surveillance with mammography. The Stanford follow-up program has not had core financial support.
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From page 445... ...
· Smoking among participants in the childhood cancer survivors cohort: The Partnership for Health Study (Emmons et al., 2003) · Health status of adult long-term survivors of childhood cancer: A report from the Childhood Cancer Survivor Study (Hudson et al., 2003)
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From page 446... ...
· For health care providers and planners, the study offers the first opportunity to quantitatively assess the impact of long-term cancer survivorship on the delivery of care. · For epidemiologists and biologists, the CCSS is a resource to investigate current and emerging questions regarding consequences of therapy, genetic associations, disease processes and causation, and the quality of life of survivors.
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From page 447... ...
. Examples of recent survivorship research conducted with SEERMedicare are shown in Box 7-3.
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From page 448... ...
· Patterns of endoscopic follow-up after surgery for nonmetastatic colorectal cancer (Cooper et al., 2000) · Underutilization of mammography in older breast cancer survivors (Schapi ra et al., 2000)
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From page 449... ...
Some studies of cancer survivorship, including those based on SEERMedicare data, exclude members of managed care organizations because such plans often do not have to report encounter data (e.g., individual claims for visits or services) to Medicare.
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From page 450... ...
. A cancer survivorship group and a quality of cancer care special interest group have been convened within CRN to develop research proposals, and there are plans to survey cancer patients about their care experiences, particularly care coordination (Geiger, 2004)
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From page 451... ...
There are examples of survivorship studies being incorporated into the NCI's cooperative group system treatment trials, but opportunities to use this infrastructure to further survivorship research have not been fully realized. No clinical trials of adequate design and sufficient size to judge the appropriateness of surveillance strategies for cancer survivors have been conducted in the United States.
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From page 452... ...
despite the increasing number of cancer survivors living 5 years or more after a cancer diagnosis (Aziz and Rowland, 2003)
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From page 453... ...
. One mechanism to accrue large numbers of cancer survivors who represent the diversity of the United States is to conduct multi-institution collaborative research.
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From page 454... ...
As part of the ACS study of cancer survivors described above, investigators notified all physicians caring for potential study subjects of the study and obtained their consent to contact patients. In some states, investigators were able to inform physicians of the study and their plans to contact patients unless told not to do so.
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From page 455... ...
. Researchers must use one of three options to gain access to protected health information: obtain patient authorization; obtain a waiver of authorization by having their research protocol reviewed and approved by an IRB or privacy board; or use a limited dataset with direct identifiers removed.
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From page 456... ...
. In summary, survivorship research has inherent challenges that include the difficulties and costs of following research subjects for lengthy periods and the need for large and diverse study populations.
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From page 457... ...
STATUS OF SURVIVORSHIP RESEARCH The committee, in an effort to understand how resources for research are applied to questions regarding cancer survivorship, undertook a review of topics of investigation and levels of research spending. Such a review provides only a snapshot as of 2005, but it does give an indication of the
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From page 458... ...
There is no one comprehensive source of information on research support and, as part of its review, the committee relied on the following sources: · Descriptions of NIH-sponsored survivorship research compiled by the NCI's Office of Cancer Survivorship · Listings of research projects in the CRISP (Computer Retrieval of Information on Scientific Projects) , a searchable database of federally funded biomedical research projects conducted at universities, hospitals, and other research institutions6 · Contacts with organization representatives (e.g., ACS, Lance Armstrong Foundation, Centers for Disease Control and Prevention [CDC]
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From page 459... ...
. These estimates of dedicated NIH support for cancer survivorship do not capture all survivorship research, for example, that conducted through the Clinical Trials Cooperative Groups Program.
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. 90 82 80 70 67 62 60 54 Grants 50 of 43 40 34 Number 30 20 11 10 0 1998 1999 2000 2001 2002 2003 2004 Year FIGURE 7-4 Number of cancer survivorship grants awarded by NIH, by year SOURCE: (NCI, 2004c)
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From page 461... ...
. Over its lifetime, the Office of Cancer Survivorship has controlled and distributed about $28 million to support cancer survivorship research.
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. An important opportunity to disseminate research findings is provided by a biennial conference on cancer survivorship co-sponsored by the NCI and the ACS.
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From page 463... ...
A number of funded research projects are related to cancer survivorship, including those focused on quality of life and symptom management (DoD, 2004b)
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From page 464... ...
Evaluation of survivorship services and research on preventive interventions were among the recommendations in the report co-sponsored by CDC and the Lance Armstrong Foundation, A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies. To further this report's recommendations, the CDC has supported state efforts to develop comprehensive cancer control plans that incorporate initiatives to meet the needs of cancer survivors (see Chapter 4)
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From page 465... ...
. Awards made in 2004 include those to study follow-up care for African-American breast cancer survivors, the impact of exercise in lymphoma survivors, and the fertility of women following chemotherapy for early breast cancer.
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From page 466... ...
The programs' effects on physical, emotional, social, and spiritual well-being will be assessed among cancer patients who are medically underserved and members of minority populations. · Problems faced by younger breast cancer survivors and their partners will be identified and compared to those of older survivors, and a control group of women (acquaintances of the breast cancer survivors)
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From page 467... ...
In terms of private resources for research, the ACS has invested in large survivorship cohort studies; the Lance Armstrong Foundation is building on its portfolio of survivorship research; and other private foundations are supporting research on survivorship issues relevant to their constituencies. FINDINGS AND RECOMMENDATIONS In summary, cancer survivorship research has emerged as a unique area of inquiry covering areas such as clinical late effects, psychosocial adjustment, and quality of care.
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From page 468... ...
-- Survivors' and caregivers' attitudes and preferences regarding outcomes and survivorship care -- Needs of racial/ethnic groups, residents of rural areas, and other potentially underserved groups -- Supportive care and rehabilitation programs · Interventions to improve quality of life -- Family and caregiver needs and access to supportive services -- Mechanisms to reduce financial burdens of survivorship care (e.g., the new Medicare prescription drug benefit should be carefully monitored to evaluate its impact, especially how private plan formularies cover cancer drugs) -- Employer programs to meet return-to-work needs -- Approaches to improve health insurance coverage -- Legal protections afforded cancer survivors through the Americans with Disabilities Act, Family and Medical Leave Act, HIPAA, and other laws · Survivorship research methods -- Barriers to participation -- Impact of HIPAA -- Methods to overcome challenges of survivorship research (e.g., methods to adjust for bias introduced by nonparticipation; methods to minimize loss to follow-up)
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From page 469... ...
to conduct cancer survivorship research. Longitudinal studies -- Longitudinal studies such as the Nurses' Health Study and the Physician's Health Study provide opportunities to assess survivorship issues.
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From page 470... ...
Gathering such evidence by means of well-designed clinical trials of alternative follow-up strategies is expensive, in part because such trials must incorporate many years of surveillance. The committee concludes that improvements in cancer survivors' care and quality of life depend on a much expanded research effort.
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From page 471... ...
2002. Cancer survivorship research among ethnic minority and medically underserved groups.
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From page 472... ...
2003. Quality of non-breast cancer health maintenance among elderly breast cancer survivors.
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From page 473... ...
2003a. Childhood Cancer Survivorship: Improving Care and Quality of Life.
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2004c. Funding History for Cancer Survivorship Research.
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From page 475... ...
2nd biennial ACS and NCI Cancer Survivorship Research Conference. Washington, DC: NCI.
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From page 476... ...
2003. Recruitment and retention challenges in breast cancer survivorship research: Results from a multisite, randomized intervention trial in women with early stage breast cancer.
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