"I'm a bathroom expert": a qualitative study exploring how students with physical disabilities manage toileting during college.

Introduction: Health care providers caring for youth with physical disabilities encourage them to be as independent as possible, which includes obtaining higher education when feasible. However, little is known about the experiences of higher education students in managing their toileting.

Methods: We performed 1:1 semi-structured interviews with 13 current college students with physical disabilities (4 male, 9 female), of whom six were on a formal bladder and/or bowel management program.

Perspectives of Young Men With Spina Bifida on Fertility Potential and Future Parenthood.

Objective: To explore the perspectives of young adult males with spina bifida (SB) on their fertility potential and parenthood.

Methods: Semi-structured qualitative interviews were conducted between 2/2021 and 5/2021 with men ≥18 years of age with SB on perspectives on fertility potential and parenthood. Demographic and clinical characteristics were obtained from a survey and chart review.

"There is a lot of shame that comes with this": A qualitative study of patient experiences of isolation, embarrassment, and stigma associated with overactive bladder.

Aims: Beyond causing physical discomfort, overactive bladder (OAB) is distressing to patients across a variety of psychosocial domains. In this qualitative component of a larger mixed methods study, we explore patients' lived experience with OAB to understand how this condition impacts individuals on a personal and social level, as well as their experiences interacting with the health care system.

Methods: A total of 20 patients and 12 physicians completed a questionnaire and semi-structured interview.

Expert Consensus on Pediatric Urodynamics Reporting Using Modified Delphi Technique.

Purpose: Urodynamic testing (UDS) is an important tool in the management of pediatric lower urinary tract conditions. There have been notable efforts to standardize pediatric UDS nomenclature and technique, but no formal guidelines exist on essential elements to include in a clinical report. We sought to identify ideal structure and elements of a pediatric UDS assessment based on expert consensus.

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.

"They had the lunch lady coming up to assist": The experiences of menarche and menstrual management for adolescents with physical disabilities.

Background: Menarche is a pivotal time in an adolescent's life but can be experienced differently by those with physical disabilities. Parents typically serve as the primary educators and support for their daughters during this time. Little is known about the parent's perspective of their daughter's experience preparing for menarche and learning to manage menses.

"I Just Haven't Done Any of That": Applicability of the International Index of Erectile Function in Young Men With Spina Bifida.

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.

Codevelopment of an illustration representative of people living with spina bifida for health educational materials.

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.

The transition to independence and adult care for women with Turner syndrome: Current status and priorities of 1338 women and parents.

Transitioning to adult health care and functioning is crucial for youth and young adults with special health care needs, such as those with Turner syndrome (TS). The International Turner Syndrome Consensus Group developed clinical practice guidelines to improve this transition. This study sought to evaluate how effectively they have been implemented and whether they align with the priorities of women with TS and families of girls and women with TS.

Acoustic radiation force imaging (ARFI) in the non-distended bladder does not predict abnormal urodynamic parameters in children.

Introduction: Acoustic radiation force imaging (ARFI) is a recently developed form of ultrasound imaging that allows in vivo measurement of tissue stiffness. This technology could be useful at predicting bladder compliance in children. We hypothesize that tissue stiffness, as measured by ARFI, correlates with abnormal bladder compliance and capacity in patients with bladder dysfunction.

Sexual Function of Men and Women With Spina Bifida: A Scoping Literature Review.

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.

Opioid prescribing is excessive and variable after pediatric ambulatory urologic surgery.

Background: Acute pain after surgery is one of the most frequent indications for opioid prescribing in children. Opioids are often not stored or disposed of safely after their use, placing children and others in the home at risk for accidental ingestion or intentional misuse. We currently lack evidence-based guidelines for post-operative pain management after common ambulatory pediatric urologic procedures.

Trends in Procedures to Initiate Renal Replacement Therapy among People Living with Spina Bifida.

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.

How to Discuss Sexual Health With Girls and Young Women With Spina Bifida: A Practical Guide for the Urologist.

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.

"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.

Eliminating Unnecessary Opioid Exposure After Common Children's Surgeries.

This study investigates patient-reported opioid consumption after pediatric operations.

"He told me it would be extremely selfish of me to even consider [having kids]": The importance of reproductive health to women with spina bifida and the lack of support from their providers.

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.

"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.