Parallel Meeting on Friday 5, September 2025, 14:15 - 15:05
14:15 - 14:18
S33-1 (OP)
Konrad SZYMANSKI 1, Renee SHAVNORE 2, Joshua ROTH 2, Benjamin WHITTAM 2, Pankaj DANGLE 2, Shelly KING 2, Kirstan MELDRUM 2, Martin KEAFER 2, Mark CAIN 2, Richard RINK 2 and Rosalia MISSERI 2
1) Riley Children's Health at IU Health, Pediatric Urology, Indianapolis, USA - 2) Riley Children's Health at IU Health, Indianapolis, USA
PURPOSE
No prospective studies have demonstrated that improved contience among people with spina bifid (SB) improves ealth-related quality of life (HRQOL). We aimed to determine if changes in urinary or bowel incontinence (UI, BI) correlate with HRQOL changes among people with SB.
MATERIAL AND METHODS
Children (8-17 years old) and adults with SB completed clinic questionnaires at routine appointments 3-24 months apart at our center (2018-2024). HRQOL questionnaire: QUALAS (lowest HRQOL: 0, highest: 100). Non-parametric tests and mixed effects linear regression were used.
RESULTS
135 individuals (52% female, 81% shunted) participated at 23.8 years old (median) during 259 follow-up intervals. Initially, 74% reported UI, 38% reported BI (median baseline HRQOL: 80). At median 12 months, 14% developed new incontinence (5% UI, 10% BI), 21% reported incontinence resolution (11% UI, 13% BI).
HRQOL improved with resolution of either UI or BI (+10, median), worsened after new UI or BI developed (-11) and did not change when incontinence persisted (0, p=0.0001). When baseline HRQOL was 0-84, 81% of individuals reported >=10-point HRQOL improvements after incontinence resolution, versus 37% when it persisted (absolute difference: 44%, p<0.001, number needed to treat: [NNT] 3). At baseline HRQOL 85-100, NNT was 12.
Both resolved UI and BI were independently associated with improved HRQOL (+9.3 and +10.3, p<=0.004), new UI and BI with worsened HRQOL (-10.0 and -9.8, p<=0.03). Sex, shunt, ambulatory status, age, catheterizing independently, follow-up length and treatments were not associated with additional HRQOL changes (p>=0.16).
CONCLUSIONS
We present the first evidence that continence changes correspond to HRQOL changes among children and adults with SB. Greater improvement occurs in those with lower baseline HRQOL, which includes bothersome incontinence.
14:18 - 14:21
S33-2 (OP)
Seung Hyeon YANG 1, Eun Kyung CHOI 2, Hyeseon YUN 2, Hooyun LEE 2 and Kyua KIM 2
1) Gachon University, College of Nursing, Incheon, REPUBLIC OF KOREA - 2) Yonsei University, College of Nursing, Seoul, REPUBLIC OF KOREA
PURPOSE
Spina bifida (SB) is a chronic condition requiring lifelong management (Iskandar & Finnell. NEJM 2022; 387: 444–50). Clinical characteristics such as urinary or fecal incontinence, and transition readiness impact the quality of life (QOL) of children with SB (Sawin et al., DHJ 2021; 14: 100940). Parents of children with SB report elevated levels of parenting stress, which is associated with reduced QOL (Sadighian et al., Urology 2021; 153: 339–44). However, the relationship between these factors remains unclear, hindering the development of effective interventions to enhance the QOL of children with SB. This study aims to provide a comprehensive examination of the impact on QOL of children with SB and their parents from a family and clinical characteristics perspective.
MATERIAL AND METHODS
This study was conducted in South Korea with 141 child-parent pairs. The children, aged 7–13, all had a diagnosis of spina bifida, including meningomyelocele, lipomeningomyelocele (LMMC), or tethered cord syndrome. Data were collected between October 2022 and July 2024 and analyzed using the Actor-Partner Interdependence Mediation Model.
RESULTS
Children with SB had a mean age of 9.33 years; 51.8% were boys, and 54.6% were diagnosed with LMMC. For children with SB-related clinical characteristics, child transition readiness was identified as a significant mediator between parenting stress and child QOL (estimate=-0.084). Additionally, family resilience was identified as a significant mediator between parenting stress and parental QOL (estimate=-0.131). No significant mediators were identified in the group without clinical characteristics.
CONCLUSIONS
This study found that transition readiness enhances the QOL for children with SB who have clinical characteristics, suggesting that existing transition guidelines should prioritize this group (Fremion et al., JPRM 2023; 16: 583–93). Additionally, the findings from children aged 7–13 provide strong evidence that transition education should begin earlier, as most previous studies have focused on adolescents.
14:21 - 14:24
S33-3 (OP)
Betsy HOPSON 1, Donald LEIN 2, Jeffrey BLOUNT 2, Brandon ROCQUE 2, Nataliya IVANKOVA 2, Courtney STREUR 3 and Carmen TONG 2
1) University of Alabama at Birmingham, Medicine, Birmingham, USA - 2) University of Alabama at Birmingham, Birmingham, USA - 3) University of Michigan, Ann Arbor, USA
PURPOSE
Challenges in accessing comprehensive sexual and reproductive health (SRH) information and care leave many individuals with spina bifida (SB) vulnerable to unmet SRH needs, risking unfulfilling sexual experiences and increasing susceptibility to coercion and abuse. Accurate tools are essential to measure SRH knowledge and self-efficacy in adults with SB. This study evaluates the internal consistency and construct validity of parts of a newly validated SRH survey assessing SRH knowledge and self-efficacy in partner and provider discussions.
MATERIAL AND METHODS
The SRH survey, recently validated for content, was distributed via REDCap with support from the National Spina Bifida Association (SBA) on social media, including SBA's Facebook and Adult Advisory Committee. Responses were de-identified, and each participant received a unique survey ID. Internal consistency was assessed using Cronbach's alpha, and exploratory factor analysis (EFA) examined scale structures. Statistical analyses were conducted in SPSS.
RESULTS
Seventy-nine participants completed the SRH survey. Most respondents were female (76.0%). Participants' ages ranged from 19 to 77 years (mean = 40.62, SD = 12.884) and 87.3% identified as non-Hispanic, White. Both the self-efficacy scale for partner discussions (α = 0.912, 5 items) and provider communication (α = 0.958, 8 items) had excellent internal consistency. EFA supported construct validity, with a single-factor structure explaining 75.1% of variance for partner communication and 78.0% for provider communication, indicating that each set of items measures a cohesive underlying construct of self-efficacy within its respective communication domain. Cronbach showed low consistency (α = 0.444, 11 items) and exhibited low response variability of the SRH knowledge questions
CONCLUSIONS
This study demonstrates strong internal consistency and validity for SRH self-efficacy scales in partner and provider communication among adults with SB. Limited variability in SRH knowledge responses suggests high baseline knowledge, indicating a possible need to refine knowledge assessment for broader applicability.
14:24 - 14:27
S33-4 (OP)
Alex JANG 1, Meera GANESH 1, Debbie GOLDBERG 1, Isabel ALLEN 2, Lindsay HAMPSON 1 and Hillary COPP 1
1) University of California, San Francisco, Urology, San Francisco, USA - 2) University of California, San Francisco, Epidemiology & Biostatistics, San Francisco, USA
PURPOSE
To evaluate surgical care utilization among individuals with Spina Bifida (SB) compared to the general population and identify factors associated with surgical care utilization.
MATERIAL AND METHODS
Using California's Department of Health Care Access and Information database, individuals with SB were identified and matched 1:5 by birth year to controls. All inpatient and ambulatory surgical encounters from 2005-2017 were analyzed. Primary outcomes included the mean number of surgeries per individual, identified by CPT-4 and ICD-9/10 codes and categorized by organ system. Secondary outcomes included surgical-related length of stay and total charges. Multivariable logistic regression assessed factors associated with ≥2 surgeries.
RESULTS
SB individuals underwent more surgeries than controls (4.5 vs. 2.2, p<0.001), with higher incidence of multi-organ system surgeries (58.3% vs. 25.1%, p<0.001). Rates of neurological (11.3% vs. 3.6%) and genitourinary surgeries (6.8% vs. 2.8%) were higher, but gastrointestinal (11.7% vs. 16.9%) and obstetrical/gynecological surgeries (5.2% vs. 17.7%) were lower. SB individuals had longer surgical-related hospital stays (23.3 vs. 7.2 days, p<0.001) and higher average charges ($290,000 vs. $98,000, p<0.001). SB was associated with over a threefold increased likelihood of ≥2 surgeries (aOR 3.16, 95% CI 3.04-3.29). Female sex (aOR 1.55, 95% CI 1.45-1.66), mixed ethnicity (aOR 2.80, 95% CI 2.39-3.27), and higher comorbidity (aOR 1.36, 95% CI 1.33-1.39) increased the likelihood of ≥2 surgeries, while Black race (aOR 0.85, 95% CI 0.74-0.99), non-private insurance (aOR 0.89, 95% CI 0.82-0.97), and lower socioeconomic status (aOR 0.87, 95% CI 0.81-0.94) decreased the likelihood of ≥2 surgeries.
CONCLUSIONS
SB individuals undergo more frequent and complex surgeries than the general population, with longer hospital stays and higher costs. Multiple sociodemographic factors influence surgical care utilization, highlighting the need for enhanced access to surgical resources.
14:39 - 14:42
S33-5 (OP)
J. Hogan RANDALL, Cassie HULME, W. Robert DEFOOR, Michael DAUGHERTY, Pramod REDDY, Eugene MINEVICH, Brian VANDERBRINK and Andrew STRINE
Cincinnati Children's Hospital Medical Center, Pediatric Urology, Cincinnati, USA
PURPOSE
Augmentation cystoplasty has been utilized for many years in children with neurogenic bladder to preserve renal function in the setting of a hostile bladder. While its use continues, in recent decades, the utilization of bladder botulinum toxin injection (BTI) has increased in this same population; however, a comparison of renal function preservation has not been done. In this study we aim to compare GFR preservation in patients who underwent augmentation cystoplasty versus BTI.
MATERIAL AND METHODS
Pediatric patients with spina bifida were retrospectively identified between 2011 and 2023 from time of augmentation cystoplasty or BTI at a single institution. Baseline characteristics of these two study groups, augmentation cystoplasty versus BTI, were compared. The primary outcome was a Kaplan-Meier analysis of CKD progression compared between the two groups with GFR calculated by the cystatin-C CKiD U25 formula.
RESULTS
The final cohort was 57 patients, 26 who had undergone augmentation cystoplasty and 31 who had undergone BTI. Median follow up time overall was 7.0 years (IQR 4.6-8.8 years). Patients in the BTI group were older at time of index surgery 12.1 years (IQR 8.6-14.3 years) vs 8.7 years (IQR 6.5-10.7 years); p=0.01, and preoperatively were more likely to have neurogenic detrusor overactivity on urodynamics, 61% vs 31%; p=0.03. Progression of CKD stage was observed in both groups, n=8 for augmentation cystoplasty and n=12 for BTI. This was not statistically significant by log-rank test; p=0.25.
CONCLUSIONS
There was no difference in progression of CKD between patients with spina bifida who underwent augmentation cystoplasty or BTI.
14:42 - 14:45
S33-6 (OP)
Ioana FUGARU, Brian VANDERBRINK, Katie MUELLER, Andrew STRINE and Michael DAUGHERTY
Cincinnati Children's Hospital, Department of Urology, Cincinnati, USA
PURPOSE
Mirabegron suspension, a beta-3 agonist [B3], has been approved in the United States of America for use in pediatric patients older than 3 years old in 2021. We sought to evaluate the safety, tolerability and impact on urodynamic studies of the introduction of B3 in the management of neurogenic bladder for children younger than 3 years old with spina bifida.
MATERIAL AND METHODS
A retrospective study was performed at our institution with spina bifida patients younger than 3 years old treated with off label use of B3. Patients were seen for the first outpatient urological visit at 3 months of age, and subsequently underwent clinical and urologic evaluation at various timepoints. Patient demographics, clinical information and investigation results were extracted from the medical record.
RESULTS
18 patients received B3 at a median age of 24 months (min: 10; max: 33 months). Three patients were primarily treated with B3, 10 patients were switched to B3 due to intolerable side effects of antimuscarinics [AM] (AM to B3) and 5 patients received it as adjunct therapy (B3+AM). In the group AM to B3, 7/10 (70%) of patients maintained stable compliance after switching to B3, and 1 (10%) patient had improved bladder compliance. After switching to B3, all ten AM to B3 patients had preserved bladder capacity. Two patients experienced return of detrusor overactivity after discontinuation of AM while only on B3. There were no side effects reported by families after initiation of B3 in our cohort.
CONCLUSIONS
Spina bifida patients with neurogenic bladder younger than 3 years old may benefit from additional therapy with beta-3 agonist, particularly those experiencing intolerable side effects from antimuscarinics.
14:45 - 14:50
S33-7 (VP)
Katemanee BURAPACHAISRI 1, Alex JANG 2, Debbie GOLDBERG 3 and Hillary COPP 2
1) University of California, San Francisco, School of Medicine, San Francisco, USA - 2) UNIVERSITY OF CALIFORNIA, SAN FRANCISCO, Urology, San Francisco, USA - 3) UNIVERSITY OF CALIFORNIA, SAN FRANCISCO, Epidemiology and Biostatistics, San Francisco, USA
PURPOSE
Minimal data exists regarding awake cystoscopic injection of botulinum neurotoxin (BoNT) in pediatric patients with neurogenic bladders. We assess the tolerability of awake bladder BoNT injections in children with neurogenic bladders in a pediatric clinic.
MATERIAL AND METHODS
Retrospective chart review was conducted from 01/01/2018 to 09/16/2024 for all pediatric patients with neurogenic bladders who received awake bladder BoNT injections in a freestanding pediatric clinic. Baseline characteristics, procedural details, patients’ tolerability, and subsequent awake injections were collected.
RESULTS
We identified 42 patients (21 male, 21 female, 4-24 years old) and a total of 153 awake bladder BoNT injection encounters. The median age at first awake injection was 10.5 (IQR 7.1), with the youngest at 2-years-old. Twelve patients had cognitive delay and 7 had behavioral or mental health conditions. Thirty-six patients (86%) tolerated their first awake injection well. Of these patients, 26 (72%) had subsequent awake injections. The median time between injections was 4.9 months (minimum 3.1, maximum 17). The median number of awake injections per patient was 3 injections (minimum 1, maximum 13). Those who tolerated their first awake injection well but did not have subsequent injections were because they lacked therapeutic response (4), underwent or are awaiting urinary diversion (3), were lost to follow up (2), or died due to unrelated causes (1). Six patients (14%) poorly tolerated their first awake injection due to anxiety or pain and did not have further awake injections.
CONCLUSIONS
Pediatric patients with neurogenic bladders can tolerate awake bladder BoNT injection in the pediatric clinic from a young age.