Recruiting an underserved, difficult to reach population into a cancer trial: Strategies from the Restore-2 Rehabilitation Trial for gay and bisexual prostate cancer patients.

BACKGROUND/AIMS: Sexual minorities are small and under-researched populations that are at disproportionate risk for cancer and poor cancer outcomes. Described as a "hidden population," the principal research challenge has been to develop effective methods to identify and recruit such cancer patients into cancer studies. Online recruitment strategies, as well as targeted clinic recruitment using patient-entered sexual orientation and gender identity data from electronic medical records have potential to transform recruitment, but studies testing the effects of how to recruit using these have not been published. METHODS: In 2019, we conducted a naturalistic, three-arm, stratified prospective study to compare three recruitment strategies: (a) clinic based recruitment of prostate cancer patients from gay health and urology clinics; (b) directly from the gay community; and (c) online recruitment (through cancer support, sex/dating, and social sites). For each strategy, we estimated time, workload, and direct costs involved. To study how recruitment strategy may affect sampling, we tested for retention rates, demographic and outcome differences across sites. Using these methods, we successfully recruited 401 gay and bisexual prostate cancer patients into a randomized, controlled, 24-month trial testing an online sexual and urinary rehabilitation curriculum tailored for this population. RESULTS: There were seven key results. First, it is possible to recruit substantial numbers of sexual minority men into prostate cancer studies provided online recruitment methods are used. Second, we observed big differences in dropout during study onboarding by recruitment source. Third, within online recruitment, the online sex/dating application (app) was the most successful and efficient, followed by the cancer support site, and then the social networking site. Fourth, while clinics were the cheapest source of recruitment, they were time intensive and low in yield. Fifth, the cancer support site and sex/dating app recruits differed by several characteristics, with the former being more rehabilitation-focused while the latter were younger and more sexually active. Sixth, we found almost no differences in outcomes across the three online recruitment sites. Seventh, because retention in online studies has been a concern, we confirm very low attrition at 3- and 6 months into the trial. CONCLUSION: For sexual minority cancer research, more research on how to use sexual orientation and gender identity electronic medical record data for clinic-based recruitment is needed. For other small or hard-to-reach populations, researchers should compare and publish online versus offline recruitment strategies.

The Sexual Functioning of Gay and Bisexual Men Following Prostate Cancer Treatment: Results from the Restore Study.

Prostate cancer is the second most common cancer in gay, bisexual, and other men who have sex with men (GBM). Few studies have assessed the effects of treatment on GBM's sexual behavior. For an online survey, 193 gay and bisexual men with prostate cancer were recruited from the North American's largest online cancer support group. Sexual functioning was measured using the Expanded Prostate Cancer Index Composite (EPIC) and a tailored Gay Sexual Functioning Inventory (GSFI). GBM have worse EPIC urinary and hormonal function and worse hormonal bother, but better sexual function and bother scores than published norms. In the GSFI, two-thirds of participants described their sexual functioning, post-treatment, as fair to poor. Only 22% reported erections sufficient for insertive anal sex. For receptive anal sex, one-third met criteria for anodyspareunia. Over half reported urination problems during sex or at orgasm. Erectile difficulties were common, severe, and a reason cited for not using condoms. Three men HIV seroconverted post-prostate cancer treatment. Differences in function and bother scores were observed by type of treatment, age, race/ethnicity, sexual orientation, but not relationship status. Sexual functioning significantly predicted long-term mental and physical health. GBM scored significantly worse on mental health and better on physical health than published norms. Sexual recovery after prostate cancer treatment is problematic for most GBM. Research to develop more effective sexual recovery, tailored to the needs of GBM treated for prostate cancer, is needed. Six implications for clinicians treating GBM with prostate cancer are identified.

What Gay and Bisexual Men Treated for Prostate Cancer Want in a Sexual Rehabilitation Program: Results of the Restore Needs Assessment.

Introduction: While erectile dysfunction and urinary incontinence are well-documented effects of prostate cancer treatment, the impact of sexual concerns on the lives of gay and bisexual men treated for prostate cancer has not been well researched. Specifically there are no known studies investigating what gay and bisexual men want in sexual recovery treatment. Methods: To conduct this needs assessment, we recruited 193 gay and bisexual men with prostate cancer from the largest online cancer support group in North America. As part of a wider study of sexual functioning, participants completed a 32-item needs assessment and a qualitative question assessing their needs. Results: There was high interest in a sexual recovery program across race/ethnicity and by treatment type. The most preferred formats were a self-directed online curriculum and participation in a support group specific to gay and bisexual men with prostate cancer. A variety of formats, language and contents were deemed appropriate and important by most participants. Frank explicit language and content were preferred. Three themes emerged in the qualitative analysis. Conclusions: Gay and bisexual men treated for prostate cancer want a recovery curriculum that explicitly addresses the sexual challenges they face before, during and after treatment. While differences were identified across race and treatment type, they were relatively few and minor in magnitude, suggesting that a single online curriculum could advance rehabilitation for this population.

What Gay and Bisexual Men Treated for Prostate Cancer Are Offered and Attempt as Sexual Rehabilitation for Prostate Cancer: Results from the Restore Study.

Introduction: This is the first known study to investigate what gay and bisexual men are offered and what they try as rehabilitation to address the sexual and urinary effects of prostate cancer treatment. Methods: A total of 193 gay and bisexual men with prostate cancer were recruited from a large male cancer survivor support and advocacy website. Online participants completed survey questions asking what rehabilitation treatments were offered, what they tried and what their satisfaction was with outcomes. Results: Most participants (68.4%) reported being out as gay/bisexual to at least 1 cancer specialist. Only 8.8% reported that a sexual history was taken. The most common problems reported were loss of ejaculate (93.8%), erectile difficulties (89.6%), change in sense of orgasm (87.0%), loss of sexual confidence (76.7%), changes to the penis (65.8%), increased pain in receptive anal sex (64.8%), urinary incontinence not related to sex (64.2%) and urinary incontinence during sex (49.2%). Of these factors only loss of ejaculate, erectile difficulties and nonsexual urinary problems were commonly discussed by clinicians during prostate cancer treatment. Satisfaction with specific rehabilitation options varied widely. Conclusions: Treatment for prostate cancer lacks adequate history taking and consensus around rehabilitation practices, resulting in idiosyncratic approaches to rehabilitation. Four clinical questions may improve outcomes. Prostate cancer specialists need education to become culturally competent in addressing the unique needs of gay and bisexual patients.