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

Abstract

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.

Prostate cancer is the second most common cancer among men in the United States, with a reported 2,795,592 living with prostate cancer in 2012.¹ The 3 broad approaches to treatment are surgery, radiation only and systemic approaches involving some combination of surgery, radiation and hormonal treatments. The most common side effects of treatment are incontinence and sexual dysfunction, and for hormonal treatment reduced libido, leading to decreased quality of life.

The Centers for Disease Control and Prevention estimates that 3.5% to 4.4% of U.S. men have had sex with a man in the last 5 years,² of whom 40% to 60% are in sexual relationships.^3,4 By extrapolation 97,845 to 123,006 gay, bisexual and other men who have sex with men are living with a diagnosis of prostate cancer, including 39,138 to 73,804 men in male couples.¹

Despite prostate cancer being the most common (nonskin) cancer in GBM, it is severely under researched. In a recent review of publications since 2000,⁵ fewer than 2 articles are published yearly on the topic in English, and only 4 small quantitative studies (12 to 111 subjects) have been undertaken.6–9 To our knowledge no studies have queried GBM with prostate cancer about sexual recovery treatment options or assessed their needs. Given the small numbers, no studies have been sufficiently powered to investigate needs by race or treatment type. To address these gaps in research, as part of a larger study we conducted and report a structured needs assessment.

Materials and Methods

In 2015 to 2016 we conducted a study titled “Restore: Improving Sexual Outcomes of Gay and Bisexual Prostate Cancer Survivors,” a National Cancer Institute funded online survey of the sexual effects of prostate cancer in GBM. All recruitment was through Malecare, the largest male cancer support group and advocacy organization in North America. Participants, recruited through Malecare email, LISTSERV and social media, clicked on a link to access the study. Eligible participants were confirmed using an online screener as 1) men, 2) age 18 years or older, 3) identifying as gay, bisexual or a man who has sex with men, 4) English speaking, 5) living in a U.S. or Canadian residential zip code and 6) diagnosed with and treated for prostate cancer. For consent enrollees were required to review and affirm 7 screens detailing study purpose, risks, benefits, payment preferences and identity. A semiautomated cross-validation and deduplication protocol was used to flag and investigate suspect surveys.¹⁰ Data collection lasted from October 2015 to January 2016 (71 days). Each participant received a $50 gift card for completing the 30 to 45-minute survey.

The recruitment protocol for this study is detailed else-where.^11,12 All study procedures were approved by our university human participants protection program. To summarize, we received 502 clicks-throughs onto our welcome page, with 434 individuals (86.5%) passing eligibility and 417 (96.1%) consenting to participate. The deduplication and cross-validation protocol rejected 233 surveys as suspect, leaving 194 (46.5%) deemed from unique, valid participants. Of these men 193 (99.5%) completed the survey, comprising the final study sample.

Measures/Instruments

The survey questionnaire contained questions on 15 topics, including demographics, history of prostate cancer treatment, sexual rehabilitation history, sexual and urinary functioning, and a needs assessment. To minimize participant burden, skip and branch patterns were used. Most participants answered around 150 questions.

The needs assessment questions were placed at the end of the survey. The section began, “We are thinking of creating a program to help gay and bisexual men recover from prostate cancer. We would like to know your opinion about the following aspects of such a curriculum.” Opening questions assessed participant overall interest in such a program and preferences for curriculum delivery modality (ie online vs in person). A section assessing acceptability came next, evaluating preferred formats (eg video, text), language and inclusion of content relevant to GBM (ie use of pornography, anal dilators, and “cock rings”). Next, 17 questions assessed interest and/or importance of content, exercises, patient-physician relationship, support services and additional resources. The exact wording of questions is detailed in supplementary table 1 (http://urologypracticejournal.com/). All questions were assessed using 5-point Likert-type response options (with 1 being “totally unacceptable” and 5 being “totally acceptable”). The section ended with an open-ended request for “other suggestions, ideas or comments for the curriculum.”

Analysis

All analyses were conducted using Stata®. Criteria for interpretation of quantitative data were preset for acceptability as “acceptable” if 50% to 69% of participants rated an item as somewhat or highly acceptable, “highly acceptable” if 70% to 85% rated it so and “near universally acceptable” if more than 85% deemed it so. The same benchmarks were applied to “interest” and “importance.” In comparative analyses 5-point Likert-type items were treated as continuous data, and analyzed using 2-tailed t-tests and regression analyses. Given the number of analyses, we preset p <0.01 for significance, and p <0.05 as evidence of trend. For qualitative data we used a thematic analysis approach whereby we grouped comments from the open-ended question by themes that emerged from the data.

Results

Demographic, sexual and medical characteristics of the participants are detailed in supplementary table 2 (http://urologypracticejournal.com/). To summarize, the typical participant was a white nonHispanic, well educated male in his 60s, living in the U.S. and diagnosed about 6 years previously. Sexually he was gay identified, HIV negative, “out” and about equally likely as not to be in a long-term relationship with a man. Most participants were sexually active and had attempted some kind of rehabilitation.¹²

Most participants (130, 67.7%) reported being “very interested” or “totally interested” in participating in a structured sexual recovery program, 37 (19.3%) were “somewhat interested,” 21 (10.9%) “a little interested” and 4 (2.1%) “not at all interested.” The most preferred formats were an online curriculum (71.5%) and a group for GBM focused on sexual recovery (61.1%), followed by referral to a sex therapist or counsellor (32.1%), reading the information in a book (30.1%) and having a doctor trained in such a program (26.9%).

The acceptability of various formats, language and content of sexual rehabilitation is detailed in supplementary table 1 (http://urologypracticejournal.com/). There was high to near universal acceptability for all formats. Although sexually explicit formats had the highest “near universal” acceptability while nonsexually explicit formats had “very high” acceptability, the difference was not statistically significant. Formal language was “near universally” acceptable and preferred significantly more than euphemistic language (p = 0.03), with street language falling in between. While a variety of sexual content had very high acceptability, stories in which men shared their actual experience after being treated for prostate cancer and how to use pornography to sustain sexual interest were “near universally” preferred.

Regarding topics, almost all participants rated as important education on the sexual effects of different prostate cancer treatments, the mental health challenges following treatment, how to have sex with men after treatment, and education about the prostate and prostate cancer. Participants were also interested in what to do if they encountered a homophobic health professional or experience, were less interested in how to talk to a doctor about gay sex and were least interested in how to come out to a doctor as a man who has sex with men (p = 0.0004). For behavioral rehabilitation exercises to recover erectile function and urinary continence, and to talk with partners about sexual challenges following treatment were universally rated as important, followed by exercises to improve anal sex for the insertive and receptive partner. In terms of resources almost all participants rated as important having a way to ask questions and to get them answered, and having a way to talk with another gay or bisexual prostate cancer survivor.

Differences by race/ethnicity (white nonHispanic vs other) and treatment type (surgery only vs radiation only vs systemic) were examined. In bivariate analyses 7 of 30 analyses (23%) demonstrated statistically significant differences by race/ethnicity in the areas of educational content and exercises (supplementary table 3, http://urologypracticejournal.com/). In all 7 analyses white nonHispanics rated the content or exercises as more important than GBM of color. When race and treatment type were examined together using linear regression, only the exercises to improve urinary functioning showed significant differences. Men who underwent surgery rated the exercise to improve urinary continence as significantly more important than men who underwent radiation (F3 = 5.98, p = 0.0007; t = −3.52, p = 0.001). The differences in race revealed an evidence of trend (t = 2.03, p = 0.044).

Additionally we reran the linear regression analyses on all the continuous survey items but included only 2 levels of the treatment variable (surgery only vs radiation only) and race. Only the exercises to improve urinary functioning demonstrated significant differences (F2 [160] = 8.23, p = 0.0004). Differences between the surgery group and the radiation group remained significant (t = 3.99, p <0.001). However, the differences in race were no longer significant (t = 1.04, p = 0.300). In addition, only 1 variable showed an evidence of trend (F2 [160] = 3.06, p = 0.0499). On “exercises to improve urinary functioning” race differences remained significant (t = 2.39, p = 0.018) after effects of treatment were controlled for. However, the adjusted R² was less than 5%, indicating the variance accounted for was trivial. No other differences were observed.

In response to the prompt, “If you have other suggestions, ideas or comments for the curriculum, please add them here” 101 of 193 participants (52.3%) wrote at least 1 idea or comment (supplementary Appendix, http://urologypracticejournal.com/). At analysis these comments were grouped into categories consisting of 1) additional topics to cover, 2) strategies to increase relevance and 3) additional considerations.

Discussion

The main finding of this study is that there is very high acceptability and interest regarding a sexual recovery curriculum for GBM treated for prostate cancer. The 2 most acceptable formats were an online self-directed rehabilitation curriculum and a group focused on sexual recovery for GBM. A minority of men appeared interested in seeking professional help and, against the stereotype that older populations prefer traditional media, an online format was far preferred over a book.

In designing such a curriculum a variety of formats and language preferences were endorsed as acceptable by most participants. We noted the preference for formal or street language over polite or indirect language and similar preferences for sexually explicit vs nonsexually explicit formats. It may be that GBM in this age cohort are simply more liberal toward sexual language and formats, and comfortable with sexual explicitness. This finding may also reflect considerable frustration at not being able to get their questions about sex, especially anal sex, and prostate cancer treatment answered.

Questions on content and exercises were chosen to include potential interventions that may assist GBM regain sexual function. All were rated acceptable to highly acceptable. There was significantly greater interest in what to do if one encounters a homophobic health professional or homophobic experience when undergoing treatment than in how to come out to a physician. This finding is consistent with a recent study by Rose et al that revealed gay and bisexual prostate cancer survivors perceive most prostate cancer health care professionals to be heterocentric and specifically to reject or lack interest in the impact of prostate cancer treatment on gay sexuality.¹³

Participants viewed education regarding the sexual effects of different prostate cancer treatments, how to have sex with men after prostate cancer, and mental health sequelae to be as important as education on prostate cancer and its treatment. This finding matches qualitative comments where participants described the sexual functioning challenges of prostate cancer treatment. As one HIV positive man stated, “It is worse than living with AIDS.” These results also differ from research in heterosexual men with prostate cancer, who tend to focus on erectile dysfunction to the exclusion of mental health and relationship issues.¹⁴ The qualitative data also highlight the importance of addressing the sexual consequences of urinary incontinence. Multiple participants described how urinary challenges prevented everything from solo masturbation to dating and oral sex.

While the quantitative results confirm participant preferences for a sexual recovery curriculum, the qualitative comments provide rich context to those preferences (supplementary Appendix, http://urologypracticejournal.com/). An anticipated challenge in intervention development is the number of participants wanting highly idiosyncratic information. A key curriculum challenge will be to cover the breadth of topics while providing sufficient depth to answer patient questions. Given the paucity of research in GBM treated for prostate cancer, in many areas the evidence to guide health care programming for GBM may be lacking.

While some differences by race/ethnicity were observed, these differences were relatively minor and, given the small cell size, should be interpreted with caution. We were surprised at the lack of differences by treatment type. It may be that in collapsing hormonal treatment and systemic treatment into a single category (for statistical reasons) the combination masked differences. While findings are preliminary, they suggest that a single curriculum could address the needs of GBM across race and type of treatment.

There are several limitations to consider when interpreting our results. The sample appears fairly homogeneous, and we caution that results might not generalize beyond a gay identified, white, North American sample. In addition, the participants were all recruited online from an online male cancer support group for a study focused on the sexual effects of prostate cancer. This approach may have biased results toward an online curriculum focused on sexual recovery. Also, several participants disclosed that they had advanced cancer and/or were receiving hormone treatment. It is highly likely that this group will need other intervention(s) and possibly a separate needs assessment. Participants also recommended training for physicians, help for partners, and education for the gay community and public. In fairness to these populations their needs should be investigated as well and not simply be inferred from these results.

Another issue is that our focus was mainly on sexual rehabilitation and less on urinary incontinence. However, several participants described urinary incontinence (not just climacturia) as a problem with sexual implications. In hindsight we should have asked more questions about this issue.

Statistically we recognized a trade-off between testing for differences and the risk of type I error. For this reason we set significance levels conservatively and limited the number of statistical tests to those that made the most sense. Finally, as this study represents the first needs assessment conducted in this population, we cannot know the reliability or generalizability of the results until other studies are conducted.

Despite these limitations, this structured needs assessment has noted strengths. As it is the largest study of GBM with prostate cancer conducted to date, the use of an online recruitment strategy appears successful. To detect fake responding, a rigorous cross-validation and deduplication protocol was used. This is the first structured needs assessment of this population, so it provides an excellent starting point to inform intervention development. When combined with results from our companion article on what GBM are offered and attempt as rehabilitation,¹² we gain a more comprehensive picture of what GBM are offered, try and want as rehabilitation. Finally, a strength of the mixed methods approach is that it allows interpretation of the quantitative data through the rich and specific descriptions of what these men would like to see.

Conclusions

GBM treated for prostate cancer want a recovery curriculum that explicitly addresses the sexual and urinary challenges of treatment. Strong preferences were expressed for a curriculum tailored to GBM delivered either online or in a group format. Such a curriculum should use multimedia, be sexually explicit, be comprehensive, and address the sexual and relational dimensions of gay sex.

Abbreviations and Acronyms

GBM

gay and bisexual men

U.S.

United States