BACKGROUND: With the increasing number and diversity of cancer survivors, studies of survivors' physical, emotional, and social health and well being are of growing importance. Population-based cancer registries, which collect data on incident cases, can play an important role in quality-of-life (QoL) studies. In this review, the authors provide an overview of QoL studies that have used cancer registry data in this emerging area of research. METHODS: Publication databases were searched for relevant peer-reviewed original articles published between 2001 and mid-2011. Inclusion criteria were articles published in English that used cancer registries as the sampling frame and/or that used registry data in analyses with QoL data. All included articles were assessed on the quality of information provided, cancer registry procedures, and study design. RESULTS: In total, 173 articles from 13 countries were reviewed, and a large proportion were from the United States (n 5 72) and Europe (n 5 70). Fourteen different malignancies were studied, and the most frequent were breast cancer. Most studies focused on adult survivors, and only 4 focused on the elderly (aged >70 years). Of the reviewed articles, 110 (64%) provided a good amount of information on the cancer registry. Information less frequently reported included mainly follow-up of vital status and characteristics of respondents/nonrespondents. CONCLUSIONS: QoL studies increasingly use population-based registries, which provide important clinical variables and an excellent sampling frame for identifying subgroups. Until now, most studies have tended to focus on more prevalent cancers, and surprisingly few studies have focused on QoL of elderly survivors, who remain understudied in clinical trials.
INTRODUCTIONThe number of cancer survivors worldwide is increasing because of a combination of rising cancer incidence rates and improving 5-year survival rates. Specifically, as the absolute size and proportion of the world population aged >65 years continues to grow, it is likely that the number of individuals being diagnosed with cancer also will continue to rise. In addition, advances in cancer screening, early detection, and treatment strategies have resulted in significant increases in the 5-year survival rate for all cancers combined in most industrialized countries.1 However, despite these advances, cancer treatments often are quite debilitating and may put cancer survivors at risk for late/long-term effects, such as fatigue, cardiomyopathy, or second primary cancers.2 Consequently, the long-term well being of cancer survivors has begun to demand increasing attention.2,3 Clearly, more research is needed to address these issues. However, the identification and recruitment of post-treatment cancer survivors can be a challenge to conducting such studies.One potential solution to the challenges of identification and recruitment of cancer survivors for research purposes is the use of national, state, and regional cancer registries. Cancer registries originally were devel...