Adherence to follow-up ten years after hypospadias repair.

Introduction: Periodic follow-up prior to and after puberty to evaluate for long-term sequalae following hypospadias repair is commonly recommended. Few studies have evaluated this follow-up, especially into adulthood. This study aimed to evaluate adherence to routine postoperative follow-up appointments over 10 years following elective hypospadias repair.

Use and Disuse of Catheterizable Channels as the Primary Method of Emptying the Neuropathic Bladder: A Single Institutional Cohort Study.

Purpose: We aimed to assess long-term use of continent catheterizable urinary channels (CCCs) and explore potential risk factors of disuse.

Materials And Methods: People undergoing appendicovesicostomy and Monti procedures at our institution were retrospectively reviewed (1991-2023). The main outcome was CCC disuse (not intermittently catheterizing channels as the primary method of bladder emptying).

Experiences and preferences of women with CAH and parents about disclosure of childhood surgery.

Introduction: Complete disclosure of childhood genital surgery to patients with congenital adrenal hyperplasia (CAH) is a critical part of CAH care. There are no guidelines or uniform recommendations on the timing and content of surgical disclosure discussions.

Objective: Our objective was to describe the experiences and preferences of females with CAH and parents of females with CAH who underwent childhood genital surgery regarding surgical disclosure.

Urology HEIRS: A Feasibility and Acceptability Study for Video-Based Research on Physician-Family Communication in Pediatric Urology Visits.

Purpose: Patient- and family-centered communication is essential to health care equity. However, less is known about how urologists implement evidence-based communication and dynamics involved in caring for diverse pediatric patients and caregivers. We sought to evaluate the feasibility and acceptability using video-based research to characterize physician-family communication in pediatric urology.

Parental decision regret after pediatric urologic surgeries compared to decisions of everyday life.

Introduction: Parents are at risk of decision regret (DR) for decisions affecting their children. The Decision Regret Scale (DRS) measures medical DR but lacks context outside of healthcare.

Objective: To compare parental DR 1) between common pediatric urologic surgeries and everyday decisions and 2) with preference to make a different choice.

Multi-stakeholder opinion statement on the care of individuals born with differences of sex development: common ground and opportunities for improvement.

Background: In the last 15 years, the care provided for individuals born with differences of sex development (DSD) has evolved, with a strong emphasis on interdisciplinary approaches. However, these developments have not convinced some stakeholders to embrace the current model of care. This care model has also paid insufficient attention to socio-cultural differences and global inequalities.

People with spina bifida use their MACE on long-term follow-up: A single institutional retrospective cohort study.

Objective: While the Malone antegrade continence enema (MACE) facilitates bowel movements in patients with spina bifida (SB) and neuropathic bowel, little is known about its long-term use. We aimed to assess long-term MACE use and potential risk factors for disuse.

Methods: All patients with SB who underwent MACE procedures at our institution were retrospectively reviewed.

Sexual activity and function of adult men with spina bifida.

Objective: Data on sexual function of men with spina bifida (SB) is limited. We aimed to assess sexual activity and erectile dysfunction (ED) in a large international sample of men with SB.

Methods: Men with SB (≥18yo) were recruited in an international online survey via clinics and social media.

Role of epigenetics in the etiology of hypospadias through penile foreskin DNA methylation alterations.

Abnormal penile foreskin development in hypospadias is the most frequent genital malformation in male children, which has increased dramatically in recent decades. A number of environmental factors have been shown to be associated with hypospadias development. The current study investigated the role of epigenetics in the etiology of hypospadias and compared mild (distal), moderate (mid shaft), and severe (proximal) hypospadias.

Age-based risk of end-stage kidney disease in patients with myelomeningocele.

Objective: We aimed to quantify end-stage kidney disease (ESKD) risk after infancy in individuals with myelomeningocele (MMC) followed by urology in the modern medical era and to assess if ESKD risk was higher after surgery related to a hostile bladder.

Methods: We retrospectively reviewed patients with MMC followed by urology at our institution born ≥ 1972 (when clean intermittent catheterization was introduced) past 1 year of age (when mortality is highest, sometimes before establishing urology care). ESKD was defined as requiring permanent peritoneal/hemodialysis or renal transplantation.

Intraoperative laser angiography in bladder exstrophy closure: A simple technique to monitor penile perfusion.

Background: The successful repair of Bladder Exstrophy remains one of the biggest challenges in Pediatric Urology. The primary focus has long been on the achievement of urinary continence. Historically there has been less focus on early penile outcomes.

Split appendix catheterizable urinary channels are at no higher risk of undergoing revision compared to channels made with the intact appendix.

Objective: To assess long-term APV and split-appendix MACE durability and to compare split and intact appendix APVs in a large patient cohort.

Methods: This retrospective cohort study included consecutive patients ≤21 years old undergoing an APV at our institution (1990-2019). Main outcomes were stomal and subfascial revisions.

Incidence of nephrolithiasis after bladder augmentation in people with spina bifida.

Introduction: Risks of nephrolithiasis after bladder augmentation in people with spina bifida (SB) remain unclear. Annual incidence of nephrolithiasis in the general population is 0.01% for 10-14 years old, 0.

Troubleshooting problems with antegrade continent enema flushes: The Indiana university algorithm.

Introduction: Antegrade continence enemas have transformed treatment and improved the quality of life in children with neuropathic bowel, refractory constipation and fecal incontinence. However, it can often be difficult to manage problems that arise with ACE flushes.

Objective: We report the use of an online tool designed for nurses to help troubleshoot calls for problems associated with antegrade continence enema (ACE) flushes as well as update our algorithm for managing refractory constipation/fecal incontinence in a large single institution experience.

Majority of females with a life-long experience of CAH and parents do not consider females with CAH to be intersex.

Introduction: To assess opinions of females with CAH, and parents of females with CAH, about designating this population "intersex," particularly in legislation about genital surgery during childhood.

Methods: We conducted a mixed-methods (quantitative and qualitative) anonymous cross-sectional online survey of females with CAH (46XX, 16+years old) and independently recruited parents of girls with CAH (2019-2020) diagnosed in first year of life from the United States. A multidisciplinary CAH team drafted the survey in collaboration with women with CAH and parents.

Evolving indications for surgical intervention in patients with differences/disorders of sex development: Implications of deferred reconstruction.

Rare medical conditions are difficult to study due to the lack of patient volume and limited research resources, and as a result of these challenges, progress in the care of patients with these conditions is slow. Individuals born with differences of sex development (DSD) fall into this category of rare conditions and have additional social barriers due to the intimate nature of the conditions. There is also a lack of general knowledge in the medical community about this group of diverse diagnoses.

Provider perspectives on shared decision-making regarding hypospadias surgery.

Introduction: Many parents experience decisional conflict and decisional regret around hypospadias surgery. The utilization of a shared decision-making (SDM) process may mitigate these issues, however addressing the principal components of the SDM process is a complex task that requires the investment of providers.

Objective: The purpose of this study was to facilitate a discussion about SDM anchored on hypospadias with pediatric urology and general pediatric providers to explore perspectives, clinical applications and barriers to adopting SDM in clinical practice.

Additional Surgeries after Bladder Augmentation in Patients with Spina Bifida in the 21st Century.

Purpose: We determined the long-term risks of additional surgery after bladder augmentation in a modern spina bifida cohort accounting for differential followup.

Materials And Methods: We retrospectively reviewed patients with spina bifida who were born after 1972 and were followed at our institution after augmentation surgery performed between 1979 and 2018. Outcomes included diversion, bladder stones, perforation, reaugmentation, laparotomy for bowel obstruction, and benign and malignant bladder tumors.

Beyond changing diapers: stress and decision-making among parents of girls with congenital adrenal hyperplasia seeking consultation about feminizing genital restoration surgery.

Introduction/background: The impact of having a child with atypical genitalia due to a life-threating chronic medical condition like congenital adrenal hyperplasia (CAH) is poorly understood.

Objective: The aim of the study was to determine parental stress and impact of CAH on parental decisions, including decisions regarding female genital restoration surgery (FGRS).

Study Design: The authors surveyed consecutive parents of girls with CAH ≤3 years presenting at a tertiary referral center for FGRS consultation (2016-2019).

Validation and Preliminary Results of the Parental Assessment of Children's External Genitalia Scale for Females (PACE-F) for Girls With Congenital Adrenal Hyperplasia.

Objective: To validate a parental assessment of children's external genitalia scale for females (PACE-F) for girls with congenital adrenal hyperplasia (CAH) by adapting the validated adult female genital self-image scale.

Methods: PACE-F was administered to parents of girls (Tanner 1, 2 months-12 years) with and without CAH. Final questions were determined by clinical relevance and psychometric properties (scores: 0-100).

Risk of Reaugmentation after Enterocystoplasty Using a Reconfigured Bowel Segment in Patients with Spina Bifida: A Bi-Institutional Cohort Study.

Purpose: Reaugmentation cystoplasty rates vary in the literature but have been reported as high as 15%. It is likely that bladders augmented with detubularized and reconfigured bowel are less likely to require reaugmentation. We assessed the incidence of reaugmentation among patients with spina bifida at 2 high volume reconstruction centers.

Radiographic abnormalities, bladder interventions, and bladder surgery in the first decade of life in children with spina bifida.

Background: Spina bifida (SB) patients are at increased risk for hydronephrosis, bladder storage and emptying problems, and renal failure that may require multiple bladder surgeries.

Methods: We retrospectively reviewed patients born with SB 2005-2009, presenting to our institution within 1 year of birth. Outcomes at 8-11 years old included final renal/bladder ultrasound (RBUS) results, clean intermittent catheterization (CIC) use, anticholinergic use, surgical interventions, and final renal function.