A systematic review of large-scale surveys of cancer survivors conducted in North America, 2000–2011

Health Services Research Program, Intramural Research Department, American Cancer Society National Home Office, Atlanta, GA, USA.
Journal of Cancer Survivorship (Impact Factor: 3.3). 03/2012; 6(2):115-45. DOI: 10.1007/s11764-012-0214-1
Source: PubMed


Many large surveys collect data on cancer survivors, but few encompass the full spectrum of domains relevant to survivorship ranging from cancer care to quality of life to late- and long-term effects of cancer and its treatment. Here, we review large data sources in North America collecting cancer survivor-reported health information, and catalogue the domains of cancer survivorship each includes.
We identified surveys of cancer survivors through a comprehensive web search of federal government agencies, non-profit organizations, and related societies that support health care research or provide health care services, as well as a systematic review of literature indexed on PubMed from 2000-2011.
A total of 57 surveys were identified, 26 nationally representative surveys and 31 regional, state, or provincial surveys. Thirty-four surveys specifically targeted cancer survivors, and an additional two surveys had supplements or modules targeted at cancer survivors. Among the nationally representative surveys, general medical characteristics and medical conditions were the most frequently reported cancer survivorship domains, and information on cancer-related costs was least frequently reported.
Our review demonstrates that a large and growing number of surveys across the U.S. and Canada are collecting data on cancer survivors. These surveys differ in design, geographic region, primary population of interest, cancer site, and research areas of interest. They address a wide range of survivorship issues. Future cancer survivorship research should concentrate on understudied areas in order to better understand the challenges faced by this growing population.

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    ABSTRACT: Introduction: The prevalence of cancer survivorship in the USA is expected to increase in the future because the US population is increasing in size and is aging and because survival following diagnosis is improving for many types of cancer. Medical care costs associated with cancer are also projected to increase dramatically. However, currently available data for estimating medical care costs and other important aspects of the burden of cancer, including time spent receiving medical care, productivity loss due to morbidity for patients and their families, and financial hardship, are limited, particularly in the population under the age of 65. Methods: We describe selected publicly available data sources for estimating the burden of cancer in the USA and a new collaborative effort to improve the quality of these data: the nationally representative Medical Expenditure Panel Survey (MEPS) Experiences with Cancer Survivorship Supplement. Conclusions: Data from this effort can be used to address key gaps in cancer survivorship research related to medical care costs, employment patterns, financial hardship, and other aspects of the burden of illness for cancer survivors and their families. Implications for cancer survivors: Research using the MEPS Experiences with Cancer Survivorship Supplement can inform efforts by health care policy makers, healthcare systems, providers, and employers to improve the cancer survivorship experience in the USA.
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