Introduction: 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.
Methods: 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.
Results: 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.
Discussion/conclusion: 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.