Population-based cancer registries for quality-of-life research: a work-in-progress resource for survivorship studies?

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 = 72) and Europe (n = 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.