Abstract
Objective:
In this study, we investigated if outness is more a situational or a consistent characteristic in gay, bisexual, and other men who have sex with men (GBM) treated for prostate cancer and how the disclosure of sexual orientation impacts provider discussions of sexual side effects.
Methods:
Data came from Restore, an online cross-sectional survey of 193 GBM prostate cancer survivors living in North America and were analyzed using various statistical models.
Results:
Disclosure of sexual orientation and of living with prostate cancer were not significantly correlated. Participants who were out regarding sexual orientation were more likely to report that their surgeons and urologists discussed the sexual side effects of treatment.
Conclusion:
Outness appears to be a situational phenomenon. GBM prostate cancer survivors who were out regarding sexual orientation received more discussion surrounding sexual side effects of prostate cancer treatment from their providers.
Practice implications:
It is important for healthcare providers to inquire about patient’s sexual orientation to provide holistic care to these patients to address health disparities within this group.
Keywords: Bisexual, Gay, Men who have sex with men, Prostate cancer, Sexual orientation disclosure
1. Introduction
The study of gay, bisexual, and other men who have sex with men (GBM) prostate cancer survivors is an emerging field in heath disparities research [1]. One in six GBM will receive a diagnosis of prostate cancer in their lifetime [2]. GBM prostate cancer survivors have disparities such as lower health-related quality of life scores and more dissatisfaction with care, compared to heterosexual prostate cancer survivors [3–8].
Patient disclosure of sexual orientation is an important factor since lack of disclosure of sexual orientation to providers has been found to negatively affect well-being and patient care [9–11]. Across studies of sexual minorities, individuals disclosing sexual orientation or same-sex practices to a healthcare provider ranged from 35–88% [9,12–20].
GBM describe prostate cancer care as heterocentric and focused on the cancer and effects of treatment, rather than effects on the patient [20–24]. Providers may not discuss sexuality in cancer either because of a lack of knowledge and/or belief that sexuality is not relevant in this clinical context [25], suggesting the problem may not be homophobia but reluctance by some providers to either discuss sexuality or to counsel patients in the consequences of treatment. This reluctance may be because providers believe it not relevant or are not knowledgeable about specifics of side effects regarding sex between men.
We compared being out regarding sexual orientation with being out about prostate cancer in general as it adds to the literature regarding disclosure in this group. We investigated whether outness was a “situational” phenomenon (a participant is out only in certain contexts) or a “consistent” phenomenon (a participant adopts self-disclosure of personal information in most to all situations, including being out about their sexual orientation and their prostate cancer diagnosis).
2. Methods
2.1. Participants
Restore was an online survey study conducted in 2015–16. Participants were recruited by email listserv and social media through Malecare, North America’s largest men’s cancer support group and advocacy organization. Eligibility included being biologically male; 18 years or older; self-identified as gay, bisexual, or MSM; English speaking; living in the United States or Canada; and diagnosed with, and treated for, prostate cancer. Recruitment and survey validation protocols are detailed elsewhere [26,27]. Study procedures were approved by the University of Minnesota’s human participants’ protection program. De-duplication and cross-validation left 193 participants, whose demographic characteristics are in Table 1.
Table 1.
Demographic characteristics of study participants (N = 193 gay, bisexual and other men who have sex with men diagnosed and treated for prostate cancer).
| Demographics | N | % |
|---|---|---|
|
| ||
| Gender | 192 | 99.5 |
| Male | 1 | 0.5 |
| Transgender, male-to-female | ||
| Age | 9 | 4.7 |
| 40–49 | 55 | 28.5 |
| 50–59 | 82 | 42.5 |
| 60–69 | 43 | 22.3 |
| 70–79 | 4 | 2.3 |
| 80–89 | 172 | 89.1 |
| Race | 9 | 4.7 |
| White | 2 | 2.1 |
| Black/African American | 2 | 1.0 |
| Asian American | 1 | 0.5 |
| American Indian/Alaska Native | 5 | 2.6 |
| Native Hawaiian/Pacific Islander | ||
| Other | ||
| Ethnicity | 186 | 96.4 |
| No Hispanic origin | 6 | 3.1 |
| Hispanic | ||
| Education Level | 1 | |
| Less than high school | 6 | 0.5 |
| High School or GED | 37 | 3.1 |
| Some college or associate’s degree | 69 | 19.2 |
| Bachelor’s degree | 80 | 35.8 |
| Graduate degree | 41.5 | |
| Sexual Orientation | ||
| Sexual Orientation Identity | 175 | 90.7 |
| Gay/homosexual | 18 | 9.3 |
| Bisexual, other | ||
2.2. Measures
Sexual orientation outness was assessed using the question, “How ‘out’ are you to others about your sexual attraction to other men?” (responses on a 5-point Likert scale). For analysis, these were collapsed into two groups: “less than completely out to all people” and “out to all people.” Prostate cancer outness was assessed using a similar 5-point Likert scale.
Degree of sexual orientation outness to each provider was assessed with three responses: “Out,” “Semi-out,” and “Not out.” For each provider, participants were questioned about discussion regarding treatment sexual side effects, and whether there was discussion of the effects of treatment on sex between men. Responses included: “not at all,” “briefly discussed but not in detail,” “discussed a lot/provided in-depth information, encouraged questions, and answered them.” “Primary care providers” included all primary care professions.
2.3. Statistical analysis
Spearman correlations were used to compare the participants who were out regarding sexual orientation versus those out regarding prostate cancer. Chi-square analyses tested for differences between categorical variables, using SPSS v22. “Refuse to answer” and “don’t remember” options were excluded prior to analysis. Significance level was p ≤.05.
3. Results
Most (n=148, 77.1%) were out to all about their sexual orientation or their prostate cancer diagnosis, with 62 (32.3%) participants out regarding both. However, sexual orientation disclosure was not significantly correlated with prostate cancer diagnosis disclosure (Table 2).
Table 2.
| Level of Outness | Sexual Orientation Outness | Prostate Cancer Outness | ||
|---|---|---|---|---|
| n | % | n | % | |
|
| ||||
| Not out at allOut to a few | 4 | 2.1 | 1 | 0.5 |
| people I know | 30 | 15.5 | 30 | 15.5 |
| Out to about half the | 9 | 4.7 | 25 | 13.0 |
| people I know | 33 | 17.1 | 43 | 22.3 |
| Out to most people I | 117 | 60.6 | 93 | 48.2 |
| know | - | - | 1 | 0.5 |
| Out to all/almost all | 193 | 100.0 | 193 | 100.0 |
| people I know | ||||
| Refuse to answer | ||||
| Total | ||||
Spearman correlation: rs = 0.10, p = 0.14.
These two variables were compared to better understand disclosure in general among GBM prostate cancer survivors. This adds to the understanding of disclosure of this group and can be extrapolated to the healthcare context to see if individuals think of these two aspects as related and important to disclose both, one or the other, or neither. We were limited to the “in general” context of disclosure given what data we had available from the study.
Sexual orientation disclosure differed significantly by provider type (see Table 3). Forty-five participants who saw urologists were not given the follow-up question regarding outness to their urologist. There were no significant differences between missing and non-missing data in terms of age, race/ethnicity, and sexual orientation (p = 0.85, 0.35, and 0.79, respectively). Participants were less out to providers than they were out regarding sexual orientation generally (Table 3).
Table 3.
Disclosure of sexual orientation to prostate cancer care providers1.
| Primary Care Provider2 | Surgeon3 | Oncologist4 | Urologist5 | Nurse Educator6 | ||||||
|---|---|---|---|---|---|---|---|---|---|---|
|
| ||||||||||
| Number of participants who saw this provider | 184 (96.3%) |
169 (87.6%) |
117 (61.6%) |
165 (89.2%) |
55 (29.5%) |
|||||
| Sexual Orientation Outness | n | % | n | % | n | % | n | % | n | % |
| Out | 142 | 77.2 | 99 | 58.6 | 66 | 56.4 | 72 | 60.0 | 34 | 61.8 |
| Semi-Out | 11 | 6.0 | 22 | 13.0 | 17 | 14.5 | 15 | 12.5 | 7 | 12.7 |
| Not out | 26 | 14.1 | 41 | 24.3 | 30 | 25.6 | 30 | 25.0 | 12 | 21.8 |
| Other | 5a | 2.7 | 7 b | 4.1 | 3 c | 2.7 | 3 d | 2.5 | 2 e | 3.6 |
“I was straight when diagnosed.” “He never asked but I would said if he had.” “I am homosexual but not sexually active and can’t abide the gay lifestyle.” “It never came up.”
“They knew I was married to a man but never made any reference to same sex orientation or sexual acts.” “Told them my preference, but that I’m not active.” “Don’t recall if he asked.” “Question was not asked.” “Told his nurse practitioner.” “Too straight to discuss!” “Told him after.”
“They knew I was married to a man but never made any reference to same sex orientation or sexual acts.” “Do not remember.” “It didn’t seem necessary to discuss it since I was told not to expect sexual side effects.”
“At the time, not out.” “Not sure.” “Stated my preference, but I am inactive.”
“I told them the pre-treatment workshops needed to include information for gay men.” “Don’t recall.”
Chi-square analysis among all providers in Table 3: χ2 = 20.37, df = 8, p =.009.
Chi-square analyses of participants out to all regarding sexual orientation and out to each provider type:
Primary care provider: χ2 = 98.58, df = 16, p =.0001.
Surgeon: χ2 = 77.29, df = 16, p =.0001.
Oncologist: χ2 = 47.45, df = 20, p =.0001.
Urologist: χ2 = 53.94, df = 20, p =.0001.
Nurse educator: χ2 = 50.11, df = 16, p =.0001.
Discussion of sexual side effects varied significantly among prostate cancer care providers in the study (Table 4). The frequency with which providers discuss the effects of treatment on sex between men differed significantly by specialty (Table 5). Surgeons and urologists discussed sexual side effects significantly more with men who were out to all regarding their sexual orientation. Primary care physicians discussed sexual side effects specific to sex between men significantly more with men who were out to all regarding their sexual orientation.
Table 4.
Frequency of discussion of sexual side effects of treatment by type of prostate cancer care provider1. (N = 193 gay, bisexual and other men who have sex with men diagnosed and treated for prostate cancer).
| Primary care provider | Surgeon2 | Oncologist | Urologist3 | Nurse educator | |
|---|---|---|---|---|---|
|
| |||||
| Discussed a lot/provided in-depth information, encouraged and answered questions | 39 (22.0%) | 72 (42.8%) | 37 (32.2%) | 41 (34.5%) | 19 (35.2%) |
| Briefly discussed but not in detail | 61 (34.5%) | 68 (40.5%) | 45 (39.1%) | 53 (44.5%) | 19 (35.2%) |
| Not at all | 77 (43.5%) | 28 (16.7%) | 33 (28.7%) | 25 (21.0%) | 16 (29.6%) |
Chi-square analysis among all providers in Table 4: χ2 = 38.6, df = 8, p =.0001.
Chi-square analysis of participants out to all regarding sexual orientation and discussion of sexual side effects of treatment with surgeons: χ2 = 14.79, df = 2, p =.0006.
Chi-square analysis of participants out to all regarding sexual orientation and discussion of sexual side effects of treatment with urologists: χ2 = 9.21, df = 2, p =.05.
Table 5.
Frequency of discussion about potential treatment effects regarding sex between men by prostate cancer care provider 1, (N = 193 gay, bisexual and other men who have sex with men diagnosed and treated for prostate cancer).
| Primary care provider2 | Surgeon | Oncologist | Urologist | Nurse educator | |
|---|---|---|---|---|---|
|
| |||||
| Discussed a lot/provided in-depth information, encouraged and answered questions | 11 (11.1%) | 17 (12.3%) | 18 (22.2%) | 16 (17.6%) | 9 (20.4%) |
| Briefly discussed but not in detail | 40 (40.4%) | 34 (24.6%) | 22 (27.2%) | 30 (33.0%) | 5 (11.4%) |
| Not at all | 48 (48.5%) | 87 (63.0%) | 41 (50.6%) | 45 (49.4%) | 30 (68.2%) |
Chi-square analysis among all providers in Table 5: χ2 = 20.6, df = 8, p =.008.
Chi-square analysis of participants out to all regarding sexual orientation and discussion of sexual side effects of treatment between sex with men with primary care provider: χ2 = 6.71, df = 2, p =.034.
4. Discussion and conclusion
4.1. Discussion
We investigated disclosure among GBM prostate cancer survivors and found sexual orientation outness was not significantly correlated with disclosing a prostate cancer diagnosis, suggesting disclosure among this group is situational. Participants were not consistently out to providers as compared to being out in general regarding their sexual orientation. We found sexual orientation disclosure to providers resulted in significant differences in sexual side effects discussions. Individuals can have different levels of disclosure depending on setting, but overall, our findings support outness as situational.
The characterization of sexual orientation disclosure as a situational versus consistent phenomenon is helpful in approaching discussion of sexual side effects after prostate cancer treatment. If sexual orientation disclosure is a situational phenomenon among GBM prostate cancer survivors, providers need to be proactive in eliciting this information to provide clinically relevant information to participants. Lack of disclosure of sexual orientation to providers has been associated with poor outcomes on patient care and well-being [9–11].
Rose and colleagues reported 80% of individuals disclosed sexual orientation to at least one provider, compared to 77% being out to their primary care provider in our study [20]. Kamen and colleagues report similar rates (73% in their study vs. 77% in ours for disclosure to primary physicians; 47% to surgeons versus 60% to urologists in ours; 45% versus 56% in ours to oncologists, and 43% to nurses versus 30% in ours to nurse educators) [19]. We focused on a cancer with clear sexual sequelae, versus Kamen et al.’s study of mixed cancers. Further research is needed to understand what motivates individuals to disclose sexual orientation, and how such disclosure influences known health disparities in patient-reported outcomes in GBM prostate cancer survivors [3–8].
Finding little to no discussion of sexual side effects regarding sex between men is concerning and is possibly part of the reason GBM report a high rate of dissatisfaction with prostate cancer treatment, compared to heterosexual men [6,7]: 1 in 5 reported no discussion occurred, in our analysis. Information specific to sex between men was even less common. Both surgeons and urologists were more likely to discuss sexual side effects if the patient was more out; primary providers were more likely to address sexual side effects between men with patients who were out.
We have four recommendations. First, prostate cancer patient education materials should explicitly encourage GBM patients to disclose their sexual orientation status to their providers. Second, adding a sexual orientation question to the standard intake process (with a “prefer not to answer” option if necessary) could alert the provider to tailor information to specific groups. Third, training and education programs across the cancer specialties should include education involving sexual minorities. Fourth, further research is needed to explore the factors influencing non-disclosure of sexual orientation among GBM with prostate cancer. Future research should also investigate how sexual orientation disclosure impacts health-related outcomes in GBM prostate cancer survivors.
Limitations exist in this study. First, the sample was homogenous: results may not generalize to other populations, or settings with different approaches to healthcare. Second, most participants were out to all regarding their sexual orientation, reducing diversity on our key variable. Third, there may be some double counting of the providers as a urologist may play multiple roles (e.g., oncologist and/or surgeon). We caution against making too much of the differences found between oncologists, surgeons, and urologists. Fourth, our analyses and tested associations between variables and therefore, no causal associations can be implied.
4.2. Conclusion
We attempted to characterize sexual orientation disclosure in GBM prostate cancer survivors into a situational versus consistent phenomenon and found disclosure was situational. In general men were out regarding their sexual orientation to prostate cancer care providers, and outness is associated with providers discussing sexual side effects of treatment. Knowing sexual orientation triggers providers to offer relevant information, especially regarding sexual side effects of treatment. Improving rates of tailored discussions with cancer specialists addresses low patient-reported outcomes and health disparities among GBM prostate cancer survivors.
4.3. Practice Implications
GBM prostate cancer survivors are not out in all situations, and since disclosure regarding sexual orientation predicts discussion of sexual side effects, it is important for prostate cancer providers to know their patients’ sexual orientations. This highlights opportunities to increase provider awareness of sexual orientation disclosure and importance of discussing sexual side effects of prostate cancer treatment specific to sex between men.
Acknowledgements
The Restore study was funded by the National Cancer Institute (NCI): “Understanding the Effects of Prostate Cancer on Gay and Bisexual Men,” (Grant number: 1 R21 CA182041; PI: B.R.S. Rosser), and undertaken with oversight from the University of Minnesota, institutional review board (study number: 1509S77722).
Abbreviations:
- GBM
gay, bisexual, and other men who have sex with men
- MSM
men who have sex with men
Footnotes
Declaration of Competing Interest
The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.
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