Making effective use of tumor registries for cancer survivorship research

Abstract

Background: The growing number of cancer survivors has created an increased need for survivorship research; however, the identification and recruitment of cancer survivors present some challenges. This report describes how two hospital cancer registries were used to recruit a large sample of breast cancer survivors (BCS) for a study examining the late reproductive effects of breast cancer treatments. Limitations and opportunities associated with this type of recruitment strategy are described, and the overall success of recruitment using this approach is presented.

Methods: Tumor registries from a comprehensive cancer center and a community hospital were used to identify BCS who met the study screening criteria. Invitations and response forms were mailed to all potentially eligible women, and those who did not respond by mail also were contacted by telephone. Women who indicated interest and met the study requirements were asked to give written consent, were enrolled in the study, and were sent a self-report questionnaire.

Results: Seventy percent of the eligible women (n = 733 women) responded to the mailing. Seventy-seven percent of the 512 respondents indicated a willingness to participate and were sent a questionnaire. Of these, 78% (n = 368 women) completed questionnaires. BCS recruited from the cancer center registry were more likely than those from the community hospital registry to respond to the invitation form (P = 0.033) and were more likely to return a completed questionnaire (P = 0.001). However, the community hospital provided access to a more ethnically diverse sample of survivors.

Conclusions: The two participating cancer registries were an excellent source for identifying a large sample of long-term BCS, and the different types of registries provided greater sample size and diversity. Although there are some limitations to this approach, including nonresponse of a significant number of BCS, tumor registries represent an important resource for the rapid identification of cancer survivors for research studies. Findings from this study suggest several enhancements for future studies that may increase the yield from registry recruitment.