Primary Care Physician and Urologist Perspectives on Optimizing Active Surveillance for Low-Risk Prostate Cancer.

PURPOSE: We conducted a study to understand primary care physician (PCP) and urologist perspectives on determinants of active surveillance care delivery for men with low-risk prostate cancer. METHODS: We conducted in-depth, semistructured, virtual interviews with a purposive sample of 19 PCPs and 15 urologists between June 2020 and March 2021. We used the behavioral theory-informed Theoretical Domains Framework to understand barriers to and facilitators of active surveillance care delivery. Interviews were recorded, transcribed, and deductively coded into framework domains and constructs by 3 independent coders. Participant recruitment continued until data saturation by group. RESULTS: Our study included 19 PCPs (9 female; 4 in community practices, 15 in academic medical centers) and 15 urologists (3 female; 5 in private practice, 3 in academic medical centers). The most commonly reported Theoretical Domains Framework domains affecting active surveillance care were (1) knowledge and (2) environmental context and resources. Although urologists were knowledgeable about active surveillance, PCPs mentioned limitations in their understanding of active surveillance (eg, what follow-up entails). Both groups noted the importance of an informed patient, especially how a patient's understanding of active surveillance facilitates their receipt of recommended follow-up. Physicians viewed patient loss to follow-up as a barrier, but identified a favorable organizational culture/climate (eg, good communication between physicians) as a facilitator. CONCLUSIONS: With patients increasingly involving their PCPs in their cancer care, our study presents factors both PCPs and urologists perceive (or identify) as affecting optimal active surveillance care delivery. We provide insights that can help inform multilevel supportive interventions for patients, physicians, and organizations to ensure the success of active surveillance as a management strategy for low-risk prostate cancer.

Patient and physician decision-making dynamics in overactive bladder care: A mixed methods study.

AIMS: Overactive bladder management includes multiple therapeutic options with comparable efficacy but a range of administration modalities and side effects, creating an ideal setting for shared decision-making. This study investigates patient and physician health beliefs surrounding decision-making and expectations for overactive bladder with the aim of better understanding and ultimately improving decision-making in overactive bladder care. METHODS: Patient and physician participants completed a questionnaire followed by a semi-structured interview to assess health beliefs surrounding decision making and expectations for overactive bladder treatment. The semi-structured interview guide, developed in an iterative fashion by the authors, probed qualities of overactive bladder therapies patients and physicians valued, their process of treatment selection, and their experiences with therapies. RESULTS: Patients (n = 20) frequently cited treatment invasiveness, efficacy, and safety as the most important qualities that influenced their decision when selecting overactive bladder therapy. Physicians (n = 12) frequently cited safety/contraindications, convenience, cost/insurance, and patient preference as the most important qualities. In our integration analysis, we identified four key themes associated with decision making in overactive bladder care: frustration with inaccessibility of overactive bladder treatments, discordant perception of patient education, diverging acceptability of expected outcomes, and lack of insight into other parties' decisional priorities and control preferences. CONCLUSIONS: While both patients and physicians desire to engage in a shared decision-making process when selecting therapies for overactive bladder, this process is challenged by significant divergence between patient and physician viewpoint across key domains.

Comparing Patient-reported Functional Outcomes After Radical Prostatectomy in Historical and Contemporary Practice.

PURPOSE: Modifications to surgical technique, particularly the widespread adoption of robotic surgery, have been proposed to improve functional recovery after prostate cancer surgery. However, rigorous comparison of men in historical vs contemporary practice to evaluate the cumulative effect of these changes on urinary and sexual function after radical prostatectomy is lacking. MATERIALS AND METHODS: We compared prospectively collected patient-reported urinary and sexual function from historical (PROSTQA [Prostate Cancer Outcomes and Satisfaction With Treatment Quality Assessment study], n=235) and contemporary (MUSIC-PRO [Michigan Urological Surgery Improvement Collaborative Patient Reported Outcome] registry, n=1,215) cohorts at the University of Michigan to understand whether modern techniques have resulted in functional improvements for men undergoing prostate cancer surgery. RESULTS: We found significant differences in baseline function, with better urinary (median [IQR]; 100 [93.8-100] vs 93.8 [85.5-100], P < .001) and sexual scores (median [IQR]; 83.3 [66.7-100] vs 74.4 [44.2-87.5], P < .001) prior to treatment in PROSTQA compared to MUSIC-PRO patients, respectively. There was no statistically significant difference in the pattern of urinary incontinence recovery after surgery from 6-24 months between groups (P = .14). However, men in the contemporary MUSIC-PRO group did have significantly better recovery of sexual function compared to men in the historical PROSTQA group (P < .0001). Further, we found that contemporary practice consists of men with more unfavorable demographic and clinical characteristics compared to historical practice. CONCLUSIONS: Our results demonstrate that the widespread alterations in prostate cancer surgery over the past 2 decades have yielded improvements in sexual, but not urinary, function recovery.

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.

TrueNTH Sexual Recovery Intervention for couples coping with prostate cancer: Randomized controlled trial results.

BACKGROUND: Despite significant sexual dysfunction and distress after localized prostate cancer treatment, patients typically receive only physiologic erectile dysfunction management. The authors performed a randomized controlled trial of an online intervention supporting couples' posttreatment recovery of sexual intimacy. METHODS: Patients treated with surgery, radiation, or combined radiation and androgen deprivation therapy who had partners were recruited and randomized to an online intervention or a control group. The intervention, tailored to treatment type and sexual orientation, comprised 6 modules addressing expectations for sexual and emotional sequelae of treatment, rehabilitation, and guidance toward sexual intimacy recovery. Couples, recruited from 6 sites nationally, completed validated measures at the baseline and 3 and 6 months after treatment. Primary outcome group differences were assessed with t tests for individual outcomes. RESULTS: Among 142 randomized couples, 105 patients (mostly surgery) and 87 partners completed the 6-month survey; this reflected challenges with recruitment and attrition. There were no differences between the intervention and control arms in Patient-Reported Outcomes Measurement Information System Global Satisfaction With Sex Life scores 6 months after treatment (the primary outcome). Three months after treatment, intervention patients and partners reported more engagement in penetrative and nonpenetrative sexual activities than controls. More than 73% of the intervention participants reported high or moderate satisfaction with module content; more than 85% would recommend the intervention to other couples. CONCLUSIONS: Online psychosexual support for couples can help couples to connect and experience sexual pleasure early after treatment despite patients' sexual dysfunction. Participants' high endorsement of the intervention reflects the importance of sexual health support to couples after prostate cancer treatment. LAY SUMMARY: This study tested a web-based program supporting couples' sexual recovery of sexual intimacy after prostate cancer treatment. One hundred forty-two couples were recruited and randomly assigned to the program (n = 60) or to a control group (n = 82). The program did not result in improvements in participants' satisfaction with their sex life 6 months after treatment, but couples in the intervention group engaged in sexual activity sooner after treatment than couples in the control group. Couples evaluated the program positively and would recommend it to others facing prostate cancer treatment.

Association between Treatment for Localized Prostate Cancer and Mental Health Outcomes.

PURPOSE: We aimed to compare patient-reported mental health outcomes for men undergoing treatment for localized prostate cancer longitudinally over 5 years. MATERIALS AND METHODS: We conducted a prospective population-based analysis using the Comparative Effectiveness Analysis of Surgery and Radiation (CEASAR) study. Patient-reported depressive symptoms (Centers for Epidemiologic Studies Depression [CES-D]) and domains of the Medical Outcomes Study 36-item Short Form survey evaluating emotional well-being and energy/fatigue were assessed through 5 years after treatment with surgery, radiotherapy (with or without androgen deprivation therapy) and active surveillance. Regression models were adjusted for outcome-specific baseline function, demographic and clinicopathological characteristics, and treatment approach. RESULTS: A total of 2,742 men (median [quartiles] age 64 [59-70]) met inclusion criteria. Baseline depressive symptoms, as measured by the CES-D, were low (median 4, quartiles 1-8) without differences between groups. We found no effect of treatment modality on depressive symptoms (p=0.78), though older age, poorer health, being unmarried and baseline CES-D score were associated with declines in mental health. There was no clinically meaningful association between treatment modality and scores for either emotional well-being (p=0.81) or energy/fatigue (p=0.054). CONCLUSIONS: This prospective, population-based cohort study of men with localized prostate cancer showed no clinically important differences in mental health outcomes including depressive symptoms, emotional well-being, and energy/fatigue according to the treatment received (surgery, radiotherapy, or surveillance). However, we identified a number of characteristics associated with worse mental health outcomes including: older age, poorer health, being unmarried, and baseline CES-D score which may allow for early identification of patients most at risk of these outcomes following treatment.

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.

Guidelines for Sexual Health Care for Prostate Cancer Patients: Recommendations of an International Panel.

BACKGROUND: Patients with prostate cancer suffer significant sexual dysfunction after treatment which negatively affects them and their partners psychologically, and strain their relationships. AIM: We convened an international panel with the aim of developing guidelines that will inform clinicians, patients and partners about the impact of prostate cancer therapies (PCT) on patients' and partners' sexual health, their relationships, and about biopsychosocial rehabilitation in prostate cancer (PC) survivorship. METHODS: The guidelines panel included international expert researchers and clinicians, and a guideline methodologist. A systematic review of the literature, using the Ovid MEDLINE, Scopus, CINAHL, PsychINFO, LGBT Life, and Embase databases was conducted (1995-2022) according to the Cochrane Handbook for Systematic Reviews of Interventions. Study selection was based on Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Each statement was assigned an evidence strength (A-C) and a recommendation level (strong, moderate, conditional) based on benefit/risk assessment, according to the nomenclature of the American Urological Association (AUA). Data synthesis included meta-analyses of studies deemed of sufficient quality (3), using A Measurement Tool to Assess Systematic Reviews (AMSTAR). OUTCOMES: Guidelines for sexual health care for patients with prostate cancer were developed, based on available evidence and the expertise of the international panel. RESULTS: The guidelines account for patients' cultural, ethnic, and racial diversity. They attend to the unique needs of individuals with diverse sexual orientations and gender identities. The guidelines are based on literature review, a theoretical model of sexual recovery after PCT, and 6 principles that promote clinician-initiated discussion of realistic expectations of sexual outcomes and mitigation of sexual side-effects through biopsychosocial rehabilitation. Forty-seven statements address the psychosexual, relationship, and functional domains in addition to statements on lifestyle modification, assessment, provider education, and systemic challenges to providing sexual health care in PC survivorship. CLINICAL IMPLICATIONS: The guidelines provide clinicians with a comprehensive approach to sexual health care for patients with prostate cancer. STRENGTHS & LIMITATIONS: The strength of the study is the comprehensive evaluation of existing evidence on sexual dysfunction and rehabilitation in prostate cancer that can, along with available expert knowledge, best undergird clinical practice. Limitation is the variation in the evidence supporting interventions and the lack of research on issues facing patients with prostate cancer in low and middle-income countries. CONCLUSION: The guidelines document the distressing sexual sequelae of PCT, provide evidence-based recommendations for sexual rehabilitation and outline areas for future research. Wittmann D, Mehta A, McCaughan E, et al. Guidelines for Sexual Health Care for Prostate Cancer Patients: Recommendations of an International Panel. J Sex Med 2022;19:1655-1669.

Psychological and sexual distress in rectal cancer patients and partners.

BACKGROUND: Rectal cancer (RC) patients experience unique sources of distress, including sexual dysfunction and body image concerns, which can also cause distress among partners. This preliminary study investigated patterns of psychological distress, sexual functioning, sexual distress, and relationship satisfaction among RC patient-partner couples at pivotal points during cancer treatment. METHODS: Twenty couples participated (N = 40). Patients and partners completed a series of validated measures of psychological distress (ET), sexual functioning (FSFI; IIEF), sexual distress (GMSEX; Sexual Distress Scale) and relationship satisfaction (GMREL) at time of diagnosis, 3 weeks after radiation, 4 weeks post-surgery, and after chemotherapy and surgery for ostomy closure. Descriptive statistics, t-tests, and repeated-measures ANOVA were used to analyze scores over time, first for patients and partners, and then by sex. RESULTS: Relationship satisfaction remained elevated over time. In this sample, 55% of patients and 78.9% of partners reported clinically significant rates of psychological distress at diagnosis, which decreased to 23% and 46% respectively at the last assessment. Sexual satisfaction and distress worsened for patients and partners between baseline and surgery for ostomy closure. Both male and female participants reported statistically significant declines in sexual function from baseline to end of treatment (p < 0.05). DISCUSSION: Relative to relationship satisfaction, psychological and sexual health outcomes seem more vulnerable to the effects of RC treatment during the first year after diagnosis, both for patients and partners and for men and women. Results support the need for psychosocial care and sexual education/counseling for couples coping with RC.

Urologic oncology patient perspectives during COVID-19 treatment delays.

PURPOSE: We sought to describe patient experiences during COVID-19 related delays in urologic cancer treatment. METHODS: We conducted a mixed methods study with an explanatory-sequential design. Survey findings are presented here. Patients from a Midwestern Cancer Center and the Bladder Cancer Advocacy Network (BCAN) self-reported via survey their experience of treatment delay, patient-provider communication, and coping strategies. We quantified patient distress with an ordinal scale (0-10), based on the National Comprehensive Cancer Network Distress Thermometer (NCCN-DT). RESULTS: Forty-four patients with bladder, prostate, and kidney cancers consented to the survey. Most individuals were male (n = 29; 66%) and older than 61 years of age (n = 34; 77%). Median time since diagnosis was 6 months. Dominant reactions to treatment delay included fear that cancer would progress (n = 22; 50%) and relief at avoiding COVID-19 exposure (n = 19; 43%). Most patients reported feeling that their providers acknowledged their emotions (n = 31; 70%), yet 23 patients (52%) did not receive follow-up phone calls and only 24 (55%) felt continually supported by their providers. Patients' median distress level was 5/10 with 68% (n = 30) of patients reaching a clinically significant level of distress (≥ 4). Thematically grouped suggestions for providers included better communication, more personalized support, and better patient education. CONCLUSION: During the COVID-19 pandemic, a high proportion of urologic cancer patients reached a clinically significant level of distress. While they felt concern from providers, they desired more engagement and personalized care.

Delayed urologic cancer care in the COVID-19 pandemic: Patients' experiences.

OBJECTIVE: To understand experiences of patients with genitourinary cancer who experienced delayed cancer care due to the COVID-19 pandemic. METHODS: We conducted a mixed methods study with an explanatory sequential design. Qualitative findings are reported here. Patients with muscle invasive bladder, advanced prostate or kidney cancer were eligible. Participants were selected for interviews if they self-reported low (0-3/10) or high (6-10/10) levels of distress on a previous survey. Participants were interviewed about their experiences. Interviews were transcribed, coded and categorised using thematic data analysis methodology. RESULTS: Eighteen patients were interviewed. Seven had prostate cancer, six bladder cancer and five kidney cancer. Six themes were derived from the interviews: (1) arriving at cancer diagnosis was hard enough, (2) response to treatment delay, (3) labelling cancer surgery as elective, (4) fear of COVID-19 infection, (5) quality of patient-provider relationship and communication and (6) what could have been done differently. CONCLUSION: These findings offer insight into the concerns of patients with genitourinary cancers who experienced treatment delays due to COVID-19. This information can be applied to support patients with cancers more broadly, should treatment delays occur in the future.

American Cancer Society prostate cancer survivorship care guidelines.

Prostate cancer survivors approach 2.8 million in number and represent 1 in 5 of all cancer survivors in the United States. While guidelines exist for timely treatment and surveillance for recurrent disease, there is limited availability of guidelines that facilitate the provision of posttreatment clinical follow-up care to address the myriad of long-term and late effects that survivors may face. Based on recommendations set forth by a National Cancer Survivorship Resource Center expert panel, the American Cancer Society developed clinical follow-up care guidelines to facilitate the provision of posttreatment care by primary care clinicians. These guidelines were developed using a combined approach of evidence synthesis and expert consensus. Existing guidelines for health promotion, surveillance, and screening for second primary cancers were referenced when available. To promote comprehensive follow-up care and optimal health and quality of life for the posttreatment survivor, the guidelines address health promotion, surveillance for prostate cancer recurrence, screening for second primary cancers, long-term and late effects assessment and management, psychosocial issues, and care coordination among the oncology team, primary care clinicians, and nononcology specialists. A key challenge to the development of these guidelines was the limited availability of published evidence for management of prostate cancer survivors after treatment. Much of the evidence relies on studies with small sample sizes and retrospective analyses of facility-specific and population databases.

Interest in Sex and Conversations About Sexual Health with Health Care Providers Among Older U.S. Adults.

Objectives: Sexual health is an important component of overall health and well-being for older adults. Despite this, little is known about the importance of sex to quality of life, as part of romantic relationships for older adults, and potential drivers of interactions between healthcare providers and older adults about sexual health. In this study using a nationally representative population, we describe perceptions and experiences of sex among older adults.Methods: A nationally representative, cross-sectional sample of community-dwelling U.S. adults aged 65-80 was surveyed about their sexual health and interaction with their health care providers about sexual health.Results: The survey completion rate was 75% (N = 1,002). Overall, 50.9% of men and 30.8% of women reported being sexually active. In all, 17.3% of adults aged 65-80 reported speaking to their health care provider about sexual health in the past two years and of those, 60.5% of patients initiated the conversation. Multivariable logistic regression demonstrated that sexual activity (yes/no), interest in sex, and satisfaction with sex life are major drivers of sexual health conversations between patients and healthcare providers.Conclusions: Many adults aged 65-80 are interested in and engage in sexual activity. While the majority of older adults reported a willingness to discuss their sexual health with their health care providers, few had done so, and most conversations were initiated by patients. Iterest in sex and satisfaction with sex life may be targets for intervention and offer a segue for providers as they begin the conversation to engage with older adults about their sexual health.Clinical Implications: Providers may have conversations with older adults about sexual health and may need sexual health training to have effective discussions; age nor chronic conditions should preclude this essential conversation. Clinical gerontologists may be helpful in this training and in encouraging patients to bring up sexual health concerns during their medical appointments.

"I Tell Them What I Can Feel and How Far My Legs Can Bend": Optimizing Sexual Satisfaction for Women With Spina Bifida.

BACKGROUND: There is a high reported rate of sexual dysfunction among women with spina bifida, but little is known about the etiology of this or how sexual satisfaction could be improved. AIM: To identify, through the words of women with spina bifida, perceived causes of diminished sexual satisfaction and recommendations to optimize partnered sexual encounters. METHODS: In this qualitative study, we conducted semi-structured individual interviews with 22 women with spina bifida (median age 26.5 years, range 16-52 years) who have had a romantic partner. Using Grounded Theory, interviews were independently coded by 3 reviewers. Disagreements were resolved by consensus. OUTCOMES: We identified overlapping themes of issues women experienced during sexual intimacy and strategies they learned to improve sexual encounters. RESULTS: 7 salient themes emerged from the data: (i) fear of rejection with resulting difficulty setting boundaries and the risk of coercion; (ii) conflict between spontaneity and self-care in sexual encounters; (iii) worry about incontinence during sex; (iv) trial and error in learning optimal sexual positions; (v) decreased genital sensation; (vi) safety considerations; and (vii) sharing advice with other women with spina bifida. CLINICAL IMPLICATIONS: As sexual satisfaction is influenced by physical features as well as psychological, interpersonal, and sociocultural factors, optimizing sexual satisfaction of women with spina bifida is best managed with a holistic approach utilizing a biopsychosocial model. STRENGTHS & LIMITATIONS: The sample included women with a diverse range of functional impairments. Women were forthright with their comments and thematic saturation was reached. Recruitment was primarily from a single Midwestern institution, which may have limited sampled perspectives. CONCLUSION: While women with spina bifida encounter challenges during sexual encounters, strategies focused on improving communication with partners and addressing specific physical considerations can potentially enhance their sexual experiences. Streur CS, Schafer CL, Garcia VP, et al. "I Tell Them What I Can Feel and How Far My Legs Can Bend": Optimizing Sexual Satisfaction for Women With Spina Bifida. J Sex Med 2020;17;1694-1704.

"If Everyone Else Is Having This Talk With Their Doctor, Why Am I Not Having This Talk With Mine?": The Experiences of Sexuality and Sexual Health Education of Young Women With Spina Bifida.

INTRODUCTION: Women with spina bifida are sexually active, but most never discuss this topic with providers. AIM: To determine what women with spina bifida understand about their sexual health, how they learned about it, what questions they have, and their experiences with their sexuality. METHODS: For this qualitative study, women with spina bifida ages 16 and older without marked developmental delay were individually interviewed. 25 women with spina bifida participated (mean age 27.1 years, range 16-52). Interviews were independently coded for themes by 3 reviewers, using Grounded Theory, with disagreements resolved by consensus. MAIN OUTCOME MEASURES: We identified overlapping themes regarding the women's perception and experience of their sexuality and sexual health education. RESULTS: 17 of the 25 (68%) participants had been or were currently sexually active. 5 themes emerged regarding their understanding of their sexuality and their sexual experiences: (i) being perceived as asexual, (ii) sources for sex education, (iii) need for spina bifida-specific sex education, (iv) impact of spina bifida-specific features on sexual encounters, and (v) perceived relationship between low sexual self-confidence and risk for sexual assault. CLINICAL IMPLICATIONS: Women with spina bifida are sexual beings, but they are perceived as asexual by providers, which prevents them from getting adequate sexual health education and leaves them with misconceptions and unanswered questions, as well as vulnerable to sexual abuse. STRENGTH & LIMITATIONS: The strengths of this study include the diversity of women interviewed, including their age, severity of disability, and experiences with their sexuality, as well as the ability to reach thematic saturation. The limitation of this study is that most women received treatment at a single Midwestern tertiary referral center in the United States. CONCLUSION: Including sexual health discussions in the usual care of women with spina bifida is critical to enhancing their sexual confidence and experience and preventing sexual abuse. Streur CS, Schafer CL, Garcia VP, et al. "If Everyone Else Is Having This Talk With Their Doctor, Why Am I Not Having This Talk With Mine?": The Experiences of Sexuality and Sexual Health Education of Young Women With Spina Bifida. J Sex Med 2019;16:853-859.

Quality Indicators for Global Benchmarking of Localized Prostate Cancer Management.

PURPOSE: We sought to develop a core set of clinical indicators to enable international benchmarking of localized prostate cancer management using data available in the TrueNTH Global Registry. MATERIALS AND METHODS: An international expert panel completed an online survey and participated in a face-to-face meeting. Participants included 3 urologists, 3 radiation oncologists, 2 psychologists, 1 medical oncologist, 1 nurse and 1 epidemiologist with prostate cancer expertise from a total of 7 countries. Current guidelines on prostate cancer treatment and potential quality indicators were identified from a literature review. These potential indicators were refined and developed through a modified Delphi process during which each panelist independently and repeatedly rated each indicator based on importance (satisfying the indicator demonstrated a provision of high quality care) and feasibility (the likelihood that data used to construct the indicator could be collected at a population level). The main outcome measure was items with panel agreement indicated by a disagreement index less 1, median importance 8.5 or greater and median feasibility 9 or greater. RESULTS: The expert panel endorsed 33 indicators. Seven of these 33 prostate cancer quality indicators assessed care relating to diagnosis, 7 assessed primary treatment, 1 assessed salvage treatment and 18 assessed health outcomes. CONCLUSIONS: We developed a set of quality indicators to measure prostate cancer care using numerous international evidence-based clinical guidelines. These indicators will be pilot tested in the TrueNTH Global Registry. Reports comparing indicator performance will subsequently be distributed to groups at participating sites with the purpose of improving the consistency and quality of prostate cancer management on a global basis.

"I Don't Know What I'm Doing I Hope I'm Not Just an Idiot": The Need to Train Pediatric Urologists to Discuss Sexual and Reproductive Health Care With Young Women With Spina Bifida.

INTRODUCTION: Although pediatric urologists have taken responsibility for initiating discussions on sexual and reproductive health with spina bifida patients, research shows that very few girls and women with spina bifida have ever discussed this topic with any physician. AIM: We sought to better understand pediatric urologists' gaps in knowledge and training needs in the sexual and reproductive health education of women with spina bifida with the goal of creating a tool kit to equip providers to have these discussions. METHODS: In this qualitative study, pediatric urologists were interviewed separately about their current practices, perceived barriers, knowledge gaps, and recommendations for the tool kit until thematic saturation was reached. The interviews were recorded and transcribed verbatim, then analyzed using grounded theory by 3 independent reviewers. MAIN OUTCOME MEASURES: To evaluate the perspectives and practices of pediatric urologists, we identified the overlapping themes of the interviews. Consensus on themes was reached. RESULTS: 10 Pediatric urologists participated in the study, including 5 men and 5 women, of whom 4 were fellows and 6 were attending physicians (mean years of practice 18, range 6-31 years). The mean number of patients followed up in the respective spina bifida clinics or by the provider was 434 (range 24-1,500). The following themes regarding pediatric urologists' experience providing sexual and reproductive health education to women with spina bifida emerged. Pediatric urologists': (i) lack of formal training; (ii) knowledge gaps such as spina bifida sexuality, fertility, and pregnancy experience; (iii) barriers to having sexual and reproductive health conversations such as lack of comfort and lack of time; (iv) facilitators of these conversations such as a long-term relationship with the patient and the patient's own initiative; (v) desire to learn and provide competent care; and (vi) recommendations for a web-based tool kit that would include content to address the knowledge gaps and training about how to start sexual and reproductive health conversations. CLINICAL IMPLICATIONS: These findings can provide the beginning concepts for the development of training on providing sexual and reproductive health education for pediatric urologists' care for women with spina bifida. STRENGTHS & LIMITATIONS: This study gives the perspectives of 10 pediatric urologists with a diversity of backgrounds, but all of whom care for a large number of spina bifida patients. This does not give the perspectives of the spina bifida women themselves, which will be evaluated in the next phase of the study. CONCLUSION: Pediatric urologists are not trained and do not feel prepared to provide sexual and reproductive health education for girls and women with spina bifida. However, they do see it as their scope of practice and wish to acquire competence in this area. Streur CS, Schafer CL, Garcia VP, et al. "I Don't Know What I'm Doing… I Hope I'm Not Just an Idiot": The Need to Train Pediatric Urologists to Discuss Sexual and Reproductive Health Care With Young Women With Spina Bifida. J Sex Med 2018;15:1403-1413.

A systematic review of dyadic studies examining relationship quality in couples facing colorectal cancer together.

BACKGROUND: Despite the adverse effects that treatment for colorectal cancer can have on patients' quality of life and, in particular, their intimate relationships, very little research has been conducted on the psychosocial adjustment for both patients and their partners/spouses. OBJECTIVES: The aim of this systematic review was to examine dyadic studies of adjustment in couples in which one partner has been diagnosed with colorectal cancer. METHODS: Pub Med, PsychINFO, MEDLINE, Social Sciences Abstracts (EBSCO), and the Cochrane Library were systematically searched for studies reporting quality of life outcomes for colorectal cancer patients and their partners/spouses. Only studies that included dyads in the sample were eligible for inclusion. The Quality Assessment Tool for Quantitative Studies was used to evaluate each study. RESULTS: A total of 277 studies were identified, of which 9 studies met the inclusion criteria (N = 388 couples). The methodological quality of the studies was high in that they used standardized instruments validated with their samples, conducted dyadic data analyses (when appropriate), and used longitudinal designs. A synthesis of the studies revealed that (1) relationship factors (eg, support, communication, dyadic coping, and relationship satisfaction) affect adjustment to cancer; (2) cancer-related distress impacts each partner's adjustment or the relationship; and (3) gender, role (patient/caregiver), and clinical characteristics (treatment, mental health) can mediate adjustment to cancer. CONCLUSION: The quality of the relationship can influence patients' and their partners' adjustment to colorectal cancer. Psychosocial interventions that address relationship issues may be beneficial to couples facing the challenges of colorectal cancer.