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Aim: To assess perspectives on clinical communication about sexual health in young adult males with spina bifida., Method: Semi-structured interviews were conducted between February and May 2021 with males at least 18 years of age with spina bifida to assess their perspectives and experiences of sexual health communication with clinicians. Demographic and clinical characteristics were obtained from chart review and a survey of patients. Interviews were transcribed verbatim, and conventional content analysis was used for transcript coding., Results: Twenty individuals participated with a median age of 22 years 6 months (range 18-29 years). Sixteen had myelomeningocele. Most identified as heterosexual (n = 17) and not sexually active (n = 13). Barriers and facilitators of successful interactions were identified. Barriers for participants included general discomfort with talking about sex and variability in individual preferences for how conversations occur. Facilitators included participants' comfort with their urologist and discussing sex in relation to disability. Suggestions for improving discussions included (1) notifying individuals that discussion about sex will occur before clinic visits; (2) creating space for discussions; (3) respecting individuals' readiness to discuss; and (4) making discussions disability specific., Interpretation: Young adult males with spina bifida are interested in discussing sexual health with their clinicians. Great variability exists about conversation preferences, emphasizing the need to individualize clinical communication about sex. Current health guidelines for males may not be in line with individuals' wishes., What This Paper Adds: Great variability exists in individual preference around sexual health communication. Patient-level barriers hinder successful conversations about sex. Individuals have great insight into how conversations about sex can be improved., (© 2023 The Authors. Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press.)

Purpose: We evaluate the applicability of the International Index of Erectile Function in young men with spina bifida and identify spina bifida-specific sexual experiences not captured by this measure., Materials and Methods: Semistructured interviews were conducted between February 2021 and May 2021 with men ≥18 years of age with spina bifida. The International Index of Erectile Function was completed by participants, and perspectives on its applicability were discussed. Participant experiences and perspectives around sexual health were discussed to identify aspects of the sexual experience not well captured by the International Index of Erectile Function. Demographic and clinical characteristics were obtained from a patient survey and chart review. Conventional content analysis framework was used for transcript coding., Results: Of 30 eligible patients approached, 20 participated. Median age was 22.5 years (range 18-29), and 80% had myelomeningocele. Most identified as heterosexual (17/20, 85%), were not in a relationship (14/20, 70%), and were not currently sexually active (13/20, 65%). Some perceived the International Index of Erectile Function as applicable, while others reported it was not, as they do not define themselves as sexually active. Aspects of the sexual experience not captured by the International Index of Erectile Function included (1) lack of control over sexual function, (2) poor lower body sensation, (3) urinary incontinence, (4) spina bifida-specific physical limitations, and (5) psychosocial barriers. Participant suggestions for improving the International Index of Erectile Function to increase its applicability were identified., Conclusions: While many perceived the International Index of Erectile Function as applicable, the measure inadequately captures the diverse sexual experiences of young men with spina bifida. Disease-specific instruments to evaluate sexual health are needed in this population.

Background: The lack of health education resources specific to people with disabilities contributes to disparities in outcomes. Developing user-centered materials with representative images tailored to people with disabilities could help improve knowledge and outcomes., Objective: As a first step in developing an online sexual health resource for adolescents with physical disabilities, we sought end-user feedback to create illustrated characters for use in educational materials., Methods: Two styles of characters were developed by the research team, which included a professional disability artist. Verbal and online survey feedback was obtained at the Spina Bifida Association's Clinical Care Conference. A new image was created incorporating initial feedback. The new image and favored image from the first round were then tested through an online survey advertised on the Spina Bifida Association's Instagram story feed. Open-ended comments were organized by categories and overlapping themes., Results: Feedback was obtained from 139 audience members and 25 survey respondents from the conference and 156 Instagram survey respondents. Themes included depiction of disability, nondisability diversity, other physical appearance, emotional response, and design style. Most frequently, participants suggested the inclusion of characters with a range of accurately depicted mobility aids and of characters without mobility aids. Participants also wanted a larger, more diverse group of happy, strong people of all ages., Conclusions: This work culminated in the codevelopment of an illustration that represents how people impacted by spina bifida view themselves and their community. We anticipate that using these images in educational materials will improve their acceptance and effectiveness., (Copyright © 2023 Elsevier Inc. All rights reserved.)

Objective: To provide urologists with a practical guide for how to provide sexual health counseling to girls and women with spina bifida., Methods: The recommendations and research of several sources were synthesized to create this guidance, including clinical guidance from the Spina Bifida Association and American College of Obstetricians, the current literature on the sexual health of girls and women with spina bifida, and the multidisciplinary experience of the authors., Results: Sexual health education should be viewed by urologists as a continuous discussion, starting in early childhood and gradually building through adolescence. Developing a plan for when and how to bring it up, utilizing parents as educational partners, identifying who will provide the detailed one-on-one counseling if not the primary urologist, establishing a referral network for specialized care (eg, adolescent gynecologist, physical therapist, or sex therapist), becoming familiar with how spina bifida impacts sexual health, and being prepared for challenges are key to providing these girls and women with competent sexual health education. Urologists should also screen for abuse at each visit and be familiar with reporting and resources for when abuse is identified., Conclusion: This guidance can serve to direct urologists in providing competent sexual health education to girls and women with spina bifida. This will ensure these girls and women receive the basic education they need, and that they can be referred to appropriate sexual health experts as indicated., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Introduction: As most adults with spina bifida are either sexually active or interested in becoming sexually active, providers should understand how spina bifida impacts sexual function and options for treatment., Objectives: The objective of this study is to summarize the current literature describing how features of spina bifida impact sexual function in men and women, effective available treatment options for sexual dysfunction, and to identify research gaps., Methods: Searches were conducted in PubMed, CINAHL Complete, PsychInfo, Cochrane Central, Scopus, and Web of Science Core Collection databases using keywords related to spina bifida and sexual function. 34 primary research studies were included., Results: Most men (56-96%) can achieve an erection, although it may be insufficient for penetration. Although 50-88% ejaculate, it is often dripping, retrograde, or insensate. Twenty percent to 67% achieve orgasm. Generally, men with lower lesions and intact sacral reflexes have better outcomes, although some men with all levels of lesion report good function. Sildenafil is efficacious at treating erectile dysfunction for most men. The "TO-MAXimize sensation, sexuality, and quality of life" procedure may improve sexual function in selected men with low-level lesions. Female sexual function and treatment is less well understood. Women may experience decreased arousal, difficulties with orgasm, and pain. No treatment has been studied in women. Bowel and bladder incontinence during intercourse appears to be bothersome to men and women. Although both men and women have diminished sexual satisfaction, their sexual desire appears to be least impacted. Present studies are limited by studies' small, heterogeneous populations, the misuse of validated questionnaires in the sexually inactive population, and the lack of a validated questionnaire specific to people with spina bifida., Conclusions: Spina bifida impacts the sexual function of both men and women. Future studies should seek a better understanding of female sexual function and treatment, use validated questionnaires appropriately, and ultimately create a validated sexual function questionnaire specific to this population. Streur CS, Corona L, Smith JE, et al. Sexual Function of Men and Women With Spina Bifida: A Scoping Literature Review. Sex Med Rev 2021;9:244-266., (Copyright © 2020 International Society for Sexual Medicine. Published by Elsevier Inc. All rights reserved.)

Purpose: Given the increasing prevalence of chronic kidney disease in people with spina bifida, we sought to determine if this is associated with an increase in end stage kidney disease. We examined population based data to measure the frequency of procedures to establish renal replacement therapy-a marker for end stage kidney disease-among patients with spina bifida., Materials and Methods: We used the Healthcare Cost and Utilization Project State Inpatient Database and State Ambulatory Surgery and Services Database from Florida, Kentucky, Maryland and New York (2000 to 2014), which include encounter level data. With a diagnosis code based algorithm we identified all procedural encounters made by patients with spina bifida. We determined the percentage of these encounters that were for facilitating renal replacement therapy (ie arteriovenous anastomosis, renal transplantation). We assessed for changes over time in this percentage with the Cochran-Armitage trend test. Bivariate analysis was performed using chi-square test., Results: Of all procedures performed on patients with spina bifida over this time the proportion of procedures performed to establish renal replacement therapy significantly decreased in both the inpatient and outpatient settings (p=0.042 and p <0.001, respectively). People with spina bifida undergoing procedures to establish renal replacement therapy were, on average, young adults (mean age 34.5 and 36.0 years) with a high prevalence hypertension (75.8% of inpatients, 68.6% of outpatients)., Conclusions: The frequency of surgeries to initiate renal replacement therapy among people with spina bifida undergoing procedures is low and is not increasing. This highlights the importance of consistent care throughout adolescence and young adulthood, and hypertension screening.

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., (Copyright © 2020 International Society for Sexual Medicine. Published by Elsevier Inc. All rights reserved.)

Background: As more women with spina bifida (SB) enter their reproductive years, the number having children is significantly increasing. However, little is known about their understanding of their ability to get pregnant or their experiences in considering, planning, or interacting with providers during a pregnancy., Objective: We sought to determine what women have been told and understand about their reproductive health, their attitudes towards having children, and their experiences interacting with providers when seeking reproductive health care., Methods: In this exploratory study employing qualitative research methods and following Grounded Theory, interviews with women with SB 16 years or older were transcribed verbatim and analyzed by three coders., Results: Interviews of 25 women with SB ages 16-52 (median 26) revealed the following themes about their reproductive health perceptions and experiences: 1) poor understanding of reproductive health and potential, 2) interest in having a family, 3) facing provider's opposition to their reproductive goals, 4) going into pregnancy and delivery unprepared, 5) the importance of provider support for reproductive goals. Five women experienced an unintended pregnancy., Conclusions: Although having children is important to most women with SB in this study, they report a poor understanding of their reproductive potential with several noting unintended pregnancies. They feel uninformed and unprepared during pregnancy and face discouragement from providers. Those experiencing supportive providers report a more positive experience. This demonstrates the urgent need to educate women with SB about their reproductive health and the providers who care for them how to support and counsel these women., (Copyright © 2019 Elsevier Inc. All rights reserved.)

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., (Copyright © 2019. Published by Elsevier Inc.)

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., (Copyright © 2018 International Society for Sexual Medicine. Published by Elsevier Inc. All rights reserved.)