Recruitment of sexual minority and heterosexual colorectal cancer survivors through US cancer registries.

purposeDescribe the process, outcomes, and costs of cancer registry recruitment and enrollment of sexual minority and heterosexual non-metastatic colorectal cancer survivors into an observational survivorship study.

methodsWe recruited stage I-III colorectal cancer survivors from four US cancer registries. Potential participants were screened for eligibility, and all eligible sexual minority and every 10th heterosexual survivor was invited to participate in a 45-min telephone interview.

resultsWe mailed study packets to 17,855 individuals and obtained 6370 screening surveys of presumed eligible individuals. After screening, there were 182 eligible sexual minority and 5568 eligible heterosexual survivors. Of the 719 invited survivors, 127 sexual minority and 353 heterosexual individuals participated in the interview. There were some small differences in personal and neighborhood sociodemographic characteristics for the survivors who screened eligible and completed the interview relative to the registry sample. The per-participant direct costs were about $40, $120, and $1425 in the registry, screened eligible, and interviewed samples, respectively.

conclusionsAlthough we did not observe substantial selection biases, the costs of enrolling a representative sample were high. IMPLICATIONS FOR CANCER SURVIVORS: Inclusion of sexual orientation and gender identity as standard demographic questions in cancer registries is needed for reliable and cost-efficient monitoring of population health.