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.

Understanding the sexual health perceptions, concerns, and needs of female partners of prostate cancer survivors.

BACKGROUND: Prostate cancer (PCa) and its treatments can have a significant negative impact on the sexual health of survivors and couples, but few studies have specifically examined the impact of PCa-related sexual dysfunction on female partners of survivors. AIM: Our objective was to perform a qualitative study to comprehensively characterize female partners' perceptions of the implications of PCa on their sex lives, as well as partners' sexual health concerns and unmet needs. METHODS: We conducted semi-structured telephone interviews about sexual health and unmet needs with female partners of PCa survivors recruited from multiple clinical locations and support groups for PCa caregivers from September 2021 to March 2022. Interviews were audio-recorded, transcribed verbatim, and independently coded. Participants were recruited until thematic saturation was achieved. OUTCOMES: Outcomes of this study were female partner sexual health concerns and unmet needs. RESULTS: Among 12 participants, the median age was 65 (range 53 to 81) years, 9 were White, the median time since their partner's PCa diagnosis was 2.25 years (range 11 months to 20 years), and a majority reported that their partner had undergone radical prostatectomy, radiation, and/or hormonal therapy. Major emergent themes pertained to the significant impact of age- and PCa-related sexual dysfunction on female sexual quality of life, the dyadic nature of sexual dysfunction and recovery, the role of the partner in coping with and adjusting to sexual dysfunction, difficulties communicating about sexual dysfunction in an intimate relationship, a lack of physician-led sexual health counseling and support, and the benefit of peer interactions and proactive information seeking in addressing unmet sexual health needs. CLINICAL IMPLICATIONS: Future efforts should continue to explore the impact of PCa on partner sexual health and address unmet needs through sexual health education and support. STRENGTHS AND LIMITATIONS: In this study, we identified female partners' sexual health concerns both related to and independent of PCa survivor sexual health. Limitations include exclusion of male partners of survivors and potential responder bias, as partners who agreed to participate may have experienced more sexual health concerns. CONCLUSION: We found that female partners experience PCa-related sexual dysfunction as a couple's disease, grief due to age- and PCa-related sexual losses, and a lack of physician-led sexual health counseling and information. Our results highlight the importance of including partners of PCa survivors in the sexual recovery process and of developing sexual care programs to address partners' unmet sexual health needs.

Unmet Sexual Health Needs of Patients and Female Partners Following Diagnosis and Treatment for Prostate Cancer.

BACKGROUND: Prostate cancer (PCa) and its treatment can have significant and pervasive sexual side effects for patients and their partners; however, partner needs are not well understood, and most resources do not incorporate partner priorities. AIM: Our objective was to perform a qualitative study to identify unmet sexual needs of patients and female partners after PCa diagnosis. METHODS: We conducted a qualitative study of posts to the Inspire Us TOO Prostate Cancer Online Support and Discussion Community. Overall, 6,193 posts were identified in the Sexual Health & Intimacy forum of the community, of which 661 posts were from female authors. A random sample of 10% (n = 66) of posts from female partners and an equal number of randomly selected posts from male patients were analyzed. OUTCOMES: We assessed sexual health themes among patients and female partners. RESULTS: Multiple themes emerged that were unique to female partners of PCa survivors. These included expanding the sexual repertoire, feeling invisible, contextualizing sexual intimacy within the broader picture of survival, and addressing relationship concerns. Patients and their partners also shared common sexual health themes, including coming to terms with changes in sexual function and frustration with clinicians. Both patients and their partners use online health communities to get support and share their experiences with sexual recovery and use of sexual aids. Psychosocial treatments were infrequently mentioned, and may be particularly helpful to address partner concerns. CLINICAL IMPLICATIONS: A common concern for couples was not receiving sufficient information from healthcare providers regarding sexual side effects from PCa and its treatment. STRENGTHS AND LIMITATIONS: Strengths of the study include leveraging a unique data source to address an understudied topic of sexual health concerns among partners after PCa diagnosis. However, members of an online community may not be representative of all couples facing PCa. Also, this analysis is limited to female partners of patients with PCa, and further study is underway to examine the sexual health needs among gay and bisexual couples. CONCLUSION: Both patients and female partners have many unmet sexual health needs during PCa survivorship, and designing interventions to incorporate partner perspectives may improve the management of sexual side effects of PCa for couples. Li R, Wittmann D, Nelson CJ, et al. Unmet Sexual Health Needs of Patients and Female Partners Following Diagnosis and Treatment for Prostate Cancer. J Sex Med 2022;19:1797-1803.

Employment outcomes in family supporters of patients with early stage breast cancer and their association with patients' health-related quality of life and financial burden.

BACKGROUND: Little is known about how cancer impacts the employment status of patients' family supporters, or about associations between patients' health-related quality of life, perceived financial burden, and supporters' employment trajectory. METHODS: We surveyed patients with early stage breast cancer reported to the Georgia and Los Angeles SEER registries in 2014-15, and their spouse/partner or other family supporters. Patients and supporters were asked about employment impacts of the patient's cancer, and descriptive analyses of supporters' employment trajectories were generated. We measured patients' health-related quality of life (HRQoL) using the PROMIS scale for global health. We measured patients' perceived financial burden attributed to cancer by asking them two questions regarding (i) their financial status since their breast cancer diagnosis and (ii) how much it was impacted by their breast cancer and treatment. Associations between patients' HRQoL, perceived financial burden, and supporters' employment status were assessed using linear mixed model regression analyses. RESULTS: In total, 2502 patients (68% response rate) and 1203 supporters (70% response rate) responded; 1057 paired patient-supporter dyads were included. Similar proportions of spouse/partner and other family supporters reported missed work and lost employment due to patients' cancer. After adjustment, lower HRQoL and an increased odds of perceived financial burden among patients were associated with changes in other family supporters' employment (both p < 0.05), but not with changes in spouses'/partners' employment. Lower HRQoL was also associated with changes in patients' own employment among patients with both types of supporters (both p < 0.001). An increased odds of perceived financial burden among patients was associated with changes in patients' employment only in those supported by other family members (p < 0.001). CONCLUSIONS: Both spouse/partner and other family supporters faced adverse employment outcomes due to patients' cancer. This contributes to worse HRQoL and greater perception of financial burden among patients, especially those whose supporter is not a spouse/partner.

Gynecologic radiation oncology patients report unmet needs regarding sexual health communication with providers.

PURPOSE: Following radiation therapy (RT), women with gynecologic malignancies report high rates of sexual dysfunction, but little is known regarding sexual health communication between these patients and health-care providers. This study assessed these patients' beliefs/attitudes toward providers' sexual history taking. METHODS: Surveys were administered to women who presented for follow-up care for gynecologic cancers in an academic radiation oncology department. The surveys assessed patient sexual health beliefs and inquiry preferences. Sexual functioning was assessed using the Female Sexual Function Index (FSFI). Ordered logistic regressions were performed to assess for correlations between survey responses, FSFI, and demographic characteristics. RESULTS: Seventy-five subjects participated. Most (89.8%) had FSFI scores indicating sexual dysfunction. Most patients agreed that sexual function is an important component of overall health (78.7%) and that providers should inquire regularly (62.8%). Few (12.0%) reported embarrassment around provider discussions. Most (62.7%) preferred discussion with female providers, especially married patients (p = 0.03). Half (53.4%) agreed that sexual problems are an unavoidable part of aging, a view that was more common as education level decreased (p = 0.01). Most (62.7%) patients agreed that providers should regularly ask about their sexual history, with patients having significant differences in education level. Patients with low FSFI scores were less likely to report inquiry from their OB/Gyn (p = 0.03). CONCLUSIONS: Gynecologic cancer radiotherapy patients want to discuss sexual health, but report suboptimal provider inquiry. Patient views and experiences varied based on marital status, education level, and FSFI score. This work highlights the need for improved sexual health communication between cancer patients and providers.

Multilingual Self-Management Resources for Prostate Cancer Survivors and Their Partners: Results of a Long-Term Academic-State Health Department Partnership to Promote Survivorship Care.

OBJECTIVE: To provide innovative, evidence-based self management information and supportive care for prostate cancer survivors and their partners. We describe how an academic-public partnership facilitated the broad dissemination of evidence-based, multilingual survivorship educational materials via a state-managed prostate cancer website. METHODS: We outline the steps of an academic-public partnership leading to dissemination of online, survivorship materials as a resource for prostate cancer survivors and their partners. We examined the 5-year utilization of the materials from January 2011 to December 2015 according to 14 content areas (e.g., urinary, bowel, and sexual problems, fatigue, communication, cancer stress) and across 3 languages (English, Spanish, Arabic). RESULTS: The total number of prostate cancer survivorship materials downloaded from January 2011 to December 2015 was 89,348. The number of downloaded materials increased over time from 6,421 in 2011 to 17,496 in 2015. The most commonly downloaded content area was urine problems (27.5%), followed by bowel problems (23.4%) and sexual side effects (16.2%). The majority of downloaded materials was in English (86.3%), followed by Spanish (9.8%) and Arabic (3.9%). CONCLUSION: The academic-public partnership facilitated broad dissemination of evidence-based informational materials for prostate cancer survivors and their partners through a state-managed website from 2011 to 2015. Given the increasing role of academic-public partnerships in funding and development of robust, sustainable prostate cancer survivorship resources, this work serves as an introduction to these evidence-based materials and highlights a successful model of engagement between practitioners, research scientists, and public health administration.

Unmet informational and supportive care needs of patients following cystectomy for bladder cancer based on age, sex, and treatment choices.

PURPOSE: Assessing the unmet needs of cancer patients can help providers tailor health care services to patients' specific needs. This study examines whether the unmet informational and supportive care needs of the patients with muscle-invasive bladder cancer vary by the patients' age, sex, or individual treatment choices. METHODS AND MATERIALS: Participants (N = 30 survivors; 73.3% men) were recruited from the Mount Sinai Medical Center and through advertisements posted on a national Bladder Cancer Advocacy Network website between December 2011 and September 2012. Data were collected through individual interviews and electronic medical record review. A prior qualitative study of this cohort, using immersion/crystallization approach, confirmed the prevalence of unmet needs across the disease trajectory. This is a secondary quantitative analysis of the initial interview data we collected (i.e., quantitative analyses of transformed qualitative data using Chi-square and Fisher exact tests) to examine differences in unmet needs based on the patient's age, sex, and treatment choices. RESULTS: Younger patients (<60y) were less satisfied with the treatment information received presurgery and more likely to report posttreatment complications, choose a neobladder, and seek and receive professional support regarding sexual function, than were older patients (P<0.05). More women than men reported difficulties with self-care and relied on themselves in disease self-management as opposed to relying on spousal support (P<0.05). Patients with neobladder were more likely to report difficulties with urinary incontinence and deterioration in sexual function, whereas patients with ileal conduit were more likely to require spousal help with self-care. Patients who received chemotherapy were significantly more likely to report changes in everyday life (P<0.05). Lastly, regardless of age, sex, or treatment choice, up to 50% of patients reported feeling depressed before or after treatment. CONCLUSIONS: Unmet informational and supportive needs of patients with muscle-invasive bladder cancer during survivorship, and vary by age, sex, and treatment choices. Educational and psychological assessments as well as clinical interventions should be tailored to a patient's specific unmet needs, and to specific clinical and demographic characteristics.

Sexual Health Concerns Among Cancer Survivors: Testing a Novel Information-Need Measure Among Breast and Prostate Cancer Patients.

While it is recognized that cancer treatment can contribute to problems in sexual function, much less is currently known about the specific sexual health concerns and information needs of cancer survivors. This study tested a new instrument to measure cancer survivors' sexual health concerns and needs for sexual information after cancer treatment. The Information on Sexual Health: Your Needs after Cancer (InSYNC), developed by a multidisciplinary team of experts, is a novel 12-item questionnaire to measure sexual health concerns and information needs of cancer survivors. We tested the measure with a sample of breast and prostate cancer survivors. A convenience sample of 114 cancer survivors (58 breast, 56 prostate) was enrolled. Results of the InSYNC questionnaire showed high levels of sexual concern among cancer survivors. Areas of concern differed by cancer type. Prostate cancer survivors were most concerned about being able to satisfy their partners (57 %) while breast cancer survivors were most concerned with changes in how their bodies worked sexually (46 %). Approximately 35 % of all cancer survivors wanted more information about sexual health. Sexual health concerns and unmet information needs are common among breast and prostate cancer survivors, varying in some aspects by type of cancer. Routine screening for sexual health concerns should be included in comprehensive cancer survivorship care to appropriately address health care needs. The InSYNC questionnaire is one tool that may help clinicians identify concerns facing their patients.