Using cancer registry data for recruitment of sexual minority women: successes and limitations

J Womens Health (Larchmt). 2010 Jul;19(7):1289-97. doi: 10.1089/jwh.2009.1744.

Abstract

Objective: To identify and recruit an unknown and presumably small subgroup of survivors, that is, lesbian or bisexual women with breast cancer.

Methods: This report describes our multistep approach to recruit a representative sample of heterosexual and sexual minority breast cancer survivors. We used census data to identify geographic areas with a greater prevalence of sexual minority women (SMW), that is, lesbian and bisexual women. We then obtained the breast cancer cases from a cancer registry for these geographic areas. In the absence of sexual orientation data in cancer registries, all potentially eligible women with breast cancer needed to be contacted by telephone to determine their sexual orientation.

Results: Among the 1341 women screened who answered the question about sexual orientation, 6.3% were SMW. Overall, we processed 4143 cases to obtain completed data on 69 SMW and 257 heterosexual women with breast cancer.

Conclusions: Our findings suggest that it is resource intensive but feasible to recruit a representative sample of breast cancer survivors of different sexual orientations. Our findings can inform future studies that seek to recruit sexual minority populations from cancer registries about some of the limitations to this approach.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Breast Neoplasms*
  • Female
  • Heterosexuality
  • Humans
  • Mass Screening / methods*
  • Middle Aged
  • Minority Groups*
  • Patient Selection*
  • Registries*
  • Sexual Behavior / psychology*
  • Surveys and Questionnaires
  • Survivors