Abstract
Purpose
Describe 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.
Methods
We 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.
Results
We 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.
Conclusions
Although 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.
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Acknowledgements
The authors would like to thank all the survivors who participated in the study. They would also like to thank the following individuals for their assistance with data collection and management: Flora Berklein, Diane Brown, Susan Fish, James Gurnick, Carla Hillerns, Pei-Pei Lei, Heather Leveille, and Linda Ward.
Funding
This study was funded by the National Cancer Institute at the National Institutes of Health (1R01CA181392-01A1).
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All authors contributed to study conception, design, and implementation. Ulrike Boehmer, as Principal Investigator, conceived of the study. Melissa Clark and Bittie Behl-Chadha led the data collection. Al Ozonoff guided the data analyses. Data preparation and analyses were performed by Michael Winter. The first draft of the manuscript was written by Melissa Clark. All authors commented on drafts of the manuscript and read and approved the final manuscript.
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Clark, M.A., Behl-Chadha, B., Winter, M. et al. Recruitment of sexual minority and heterosexual colorectal cancer survivors through US cancer registries. J Cancer Surviv 18, 983–995 (2024). https://doi.org/10.1007/s11764-023-01343-y
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DOI: https://doi.org/10.1007/s11764-023-01343-y