Development and Validation of a Survey to Assess Sexual Health in Female Partners of Patients with Prostate Cancer.

BACKGROUND: Prostate cancer (PCa) diagnosis and treatment can have a significant negative impact on sexual health, affecting patients and their partners; however, the impact on partners is insufficiently addressed in current practice. OBJECTIVE: We describe the development and validation of an instrument to measure sexual health in female partners of patients with PCa. DESIGN, SETTING, AND PARTICIPANTS: Questions assessing sexual health were developed through a literature review, two qualitative studies, and an expert consensus process. Candidate survey items were tested through cognitive interviews and used to iteratively refine the questionnaire. INTERVENTION: The final questionnaire was tested in a validation study among 200 female partners. OUTCOME MEASUREMENTS AND STATISTICAL ANALYSIS: We performed an exploratory factor analysis, followed by an analysis for internal validity, test-retest reliability, and convergent and discriminant validity. RESULTS AND LIMITATIONS: An initial set of 32 items was developed and refined through cognitive interviews. The resulting 27-item questionnaire was tested among 200 female partners of patients with PCa from across the USA. The exploratory factor analysis eliminated eight items and revealed seven key factors: (1) distress/satisfaction, (2) loss of connection as a couple, (3) active communication, (4) discomfort with communication, (5) frustration with sexual counseling, (6) expansion of sexual repertoire, and (7) nonpenetrative sexual activity. The overall scale demonstrated strong internal consistency (ordinal alpha 0.94) and test-retest reliability (0.89). Strengths of the study include development and evaluation of the first questionnaire to evaluate sexual quality of life among female partners of patients with PCa. However, additional work is needed to assess sexual health and quality of life among male and nonbinary partners. CONCLUSIONS: We developed a new instrument, the Sexual Concerns In Partners of Patients with Prostate cancer (SCIPPP-F), and found it to be valid in a diverse sample of female partners across the USA. PATIENT SUMMARY: Our new instrument can be used to characterize sexual health among female partners of patients with prostate cancer.

TARGET: A Randomized, Noninferiority Trial of a Pretest, Patient-Driven Genetic Education Webtool Versus Genetic Counseling for Prostate Cancer Germline Testing.

PURPOSE: Germline genetic testing (GT) is important for prostate cancer (PCA) management, clinical trial eligibility, and hereditary cancer risk. However, GT is underutilized and there is a shortage of genetic counselors. To address these gaps, a patient-driven, pretest genetic education webtool was designed and studied compared with traditional genetic counseling (GC) to inform strategies for expanding access to genetic services. METHODS: Technology-enhanced acceleration of germline evaluation for therapy (TARGET) was a multicenter, noninferiority, randomized trial (ClinicalTrials.gov identifier: NCT04447703) comparing a nine-module patient-driven genetic education webtool versus pretest GC. Participants completed surveys measuring decisional conflict, satisfaction, and attitudes toward GT at baseline, after pretest education/counseling, and after GT result disclosure. The primary end point was noninferiority in reducing decisional conflict between webtool and GC using the validated Decisional Conflict Scale. Mixed-effects regression modeling was used to compare decisional conflict between groups. Participants opting for GT received a 51-gene panel, with results delivered to participants and their providers. RESULTS: The analytic data set includes primary outcome data from 315 participants (GC [n = 162] and webtool [n = 153]). Mean difference in decisional conflict score changes between groups was -0.04 (one-sided 95% CI, -∞ to 2.54; P = .01), suggesting the patient-driven webtool was noninferior to GC. Overall, 145 (89.5%) GC and 120 (78.4%) in the webtool arm underwent GT, with pathogenic variants in 15.8% (8.7% in PCA genes). Satisfaction did not differ significantly between arms; knowledge of cancer genetics was higher but attitudes toward GT were less favorable in the webtool arm. CONCLUSION: The results of the TARGET study support the use of patient-driven digital webtools for expanding access to pretest genetic education for PCA GT. Further studies to optimize patient experience and evaluate them in diverse patient populations are warranted.

Qualitative Study on Internet Use and Care Impact for Black Men With Prostate Cancer.

Black men have a greater risk of prostate cancer as well as worse quality of life and more decisional regret after prostate cancer treatment compared to non-Hispanic White men. Furthermore, patients with prostate cancer who primarily obtain information on the internet have significantly more decisional regret compared to other information sources. Our objective was to explore the perspectives of Black patients on the use and impact of the internet for their prostate cancer care. In 2022-2023, we conducted seven virtual focus groups with Black patients with prostate cancer (n = 22). Transcripts were independently analyzed by two experienced researchers using a constant comparative method. Online sources were commonly used by participants throughout their cancer journey, although informational needs varied over time. Patient factors affected use (e.g., physical health and experience with the internet), and family members played an active role in online information-seeking. The internet was used before and after visits to the doctor. Key topics that participants searched for online included nutrition and lifestyle, treatment options, and prostate cancer in Black men. Men reported many downstream benefits with internet use including feeling more empowered in decision-making, reducing anxiety about treatment and providing greater accountability for research. However, they also reported negative impacts such as feeling overwhelmed or discouraged sorting through the information to identify high-quality content that is personally relevant, as well as increased anxiety or loss of sleep from overuse. In summary, online sources have the potential to positively impact the cancer journey by reinforcing or supplementing information from health care providers, but can be harmful if the information is poor quality, not representative, or the internet is overused.

Representation Matters: Trust in Digital Health Information Among Black Patients With Prostate Cancer.

PURPOSE: Although the majority of US adults obtain health information on the internet, the quality of information about prostate cancer is highly variable. Black adults are underrepresented in online content about prostate cancer despite a higher incidence of and mortality from the disease. The goal of this study was to explore the perspectives of Black patients with prostate cancer on the importance of racial representation in online content and other factors influencing trust. MATERIALS AND METHODS: We conducted 7 virtual focus groups with Black patients with prostate cancer in 2022 and 2023. Participants completed an intake questionnaire with demographics followed by a group discussion, including feedback on purposefully selected online content. Transcripts were independently analyzed by 2 investigators experienced in qualitative research using a constant comparative method. RESULTS: Most participants use online sources to look for prostate cancer information. Racial representation is an important factor affecting trust in the content. A lack of Black representation has consequences, including misperceptions about a lower risk of prostate cancer and discouraging further information-seeking. Other key themes affecting trust in online content included the importance of a reputable source of information, professional website structure, and soliciting money. CONCLUSIONS: Underrepresentation of Black adults in prostate cancer content has the potential to worsen health disparities. Optimal online communications should include racially diverse representation and evidence-based information in a professional format from reputable sources without financial conflict.

Unmet Sexual Health Resource Needs and Preferences for Interventions to Address These Needs Among Female Partners of Patients With Prostate Cancer.

OBJECTIVE: To characterize unmet sexual health resource needs and preferences for interventions to address unmet needs among female partners of patients with prostate cancer (PCa), given the significant negative impact of PCa on the sexual health of partners. METHODS: We conducted an exploratory sequential mixed methods study of female partners recruited from multiple U.S. clinical locations, websites, and support groups for caregivers. We first conducted semistructured in-depth interviews. Qualitative results informed development of a cross-sectional survey, which was administered to a larger sample of partners. RESULTS: Overall, 12 and 200 female partners participated in the qualitative and quantitative portions of the study. Major emergent themes from interviews were the benefits and drawbacks of technology-based interventions, the importance of sexual health resources throughout the PCa journey, and a desire for sexual health support groups that include partners. In the survey, the most common sexual health topics that partners wanted more information about were male libido problems (30.0%), erectile dysfunction (26.5%), and female libido and arousal problems (24.5%). Additionally, 41.5% wanted more information about sexual health websites, 35.0% about partners-only support groups, 29.5% about support groups for couples, and 23.5% about sexual medicine specialists. CONCLUSIONS: To our knowledge, this is the largest study to date on female partners' unmet sexual health resource needs and preferences for sexual health interventions. Partners prefer technology-based interventions, desire sexual health-focused support groups, and want more information about a variety of sexual issues and specialists who treat them.