ICCS & ESPU-Nurses Meeting on Thursday 4, September 2025, 16:50 - 17:20
16:50 - 16:56
SN09-1 (OP)
Joy KERR, Neal JACOBSMA and Jason VAN BATAVIA
Children's Hospital of Philadelphia, Urology, Philadelphia, USA
PURPOSE
Children with Spina Bifida (SB) who experience neurogenic bowel dysfunction (NBoD) require a bowel management program and may still have issues with fecal incontinence (FI) impacting their quality of life. Our goal was to describe NBoD in a large cohort of pediatric patients using self-reported Neurogenic Bowel Dysfunction Score (NBoDS) questionnaire embedded into the electronic medical record (EMR).
MATERIAL AND METHODS
We performed a cross-sectional, retrospective study including patients aged 2-18 years in our pediatric SB Multidisciplinary Clinic who first completed the NBoDS from 1/1/2018-31/12/2024 and who had at least one of the following diagnoses: myelomeningocele, spina bifida, tethered cord, lipomeningocele, neurogenic bowel, or neurogenic bladder. We summarized overall NBoDS scores and stratified by age and diagnosis.
RESULTS
970 patients completed 5028 surveys, 30.7% were 2-5 yo, 41.6% were 6-11 yo, and 27.7% were 12-18 yo; 50.8% male and 49.2% female. Patients identified as Asian (5%), Hispanic or Latino (17%), non-Hispanic Black (9%), non-Hispanic White (57%), and Other (12%). The mean NBoDS score was 13.76. Most patients reported an average score ≥8.5, demonstrating NBoD. Average score for Question 3 regarding independence (0-2 scale) was 1.1, for Question 8 (0-3 scale) regarding frequency of fecal soiling was 0.9 and Question 12 (0-4 scale) regarding interference of lifestyle with bowel management was 1.4.
CONCLUSIONS
In our cohort, mean NBoDS scores were in line with NBoDS validation study results. The NBoDS, which can be easily accessed within the EMR, is useful in assessing symptoms and informing clinicians’ evaluation of patients’ bowel management programs and recommendations for improved bowel function.
16:56 - 17:02
SN09-2 (OP)
Valre WELCH
Children's Hospital of Richmond at VCU, Pediatric Urology, Spring Grove, USA
PURPOSE
This abstract is to review some of the benefits of the prenatal hydronephrosis reigstry related to improving the care of these patients and encourage greater participation in the registry.
MATERIAL AND METHODS
The prenatal hydronephrosis registry, active in 13 sites in N.America, has 3000 patients, started in 2015.
RESULTS
Renal US from DOL-0-2 can often look benign.US from DOL - 30 can demonstrate significantly increased dilation which justifies follow up.
Patients with renal pelvis dilation are often started on CAP due to risk of UTI. UTI rate was analyzes for those with SFU Gr II-IV without ureteral dilation. Those on CAP had a UTI rate of 4 % vs without CAP 4.4%. Groups at higher risk of UTI - females, uncircumcised males and higher grade of hydronephrosis the CAP did not make a significant difference in UTI rate, therefore CAP is not uniformly necessary.
Ureteral dilation of 7 mm or greater did increase risk of UTI and CAP was protective..
Prenatal hydronephrosis can be associated with VUR. Infants without infection, surgery or other renal anomalies, screened for VUR tended to be positive if ureteral dilation, increased renal echogenicity or bladder wall thickening were present.These were more reliable predictors of VUR than sex, degree of hydronephrosis or bilateral hydronephrosis.
CONCLUSIONS
Analysis of accumulated data improved the evaluation of patients while decreasing use of antibiotics and imaging studies.
We invite others to join us in sharing their date to continue to improve the care of these patients.
17:02 - 17:08
SN09-3 (OP)
Lisa JANG 1, Stephanie COLLINS 1, Carolyn FAZZINI 1, Myron ALLUKIAN 1, Prasanna KAPAVARAPU 2, Joy KERR 3, Keely MCCLATCHY 3, Kirsten WALASKI 2 and Jason VAN BATAVIA 3
1) The Children's Hospital of Philadelphia, General Surgery, Philadelphia, USA - 2) The Children's Hospital of Philadelphia, Gastroenterology, Philadelphia, USA - 3) The Children's Hospital of Philadelphia, Urology, Philadelphia, USA
PURPOSE
Successful management of children suffering from both bladder and bowel dysfunction (BBD) improves overall quality of life. Effective BBD management requires coordinated care across several service lines including colorectal surgery, urology, and GI motility teams. Siloed care models result in conflicts with scheduling several appointments and care coordination amongst these teams. We hypothesized that a trans-disciplinary clinic for children with BBD would streamline care and lead to fewer office visits (OV) and ED visits per year.
MATERIAL AND METHODS
Data from a single center monthly trans-disciplinary clinic was reviewed retrospectively over the first year of the program. Office visits (OV), ED visits, phone calls and electronic message were counted both in the year prior and following establishment of the clinic. Values were analyzed using Wilcoxon signed-rank test to detect significant differences.
RESULTS
Thirty patients were seen in NEBULA. The median number of OVs per year prior to NEBULA was 3 and decreased significantly to 1.7 while in the NEBULA program (p<0.001). The mean number of ED visits pre-NEBULA was 1 which significantly decreased to 0.4 (p=0.03). The median of calls/messages was 7.5 per year pre-NEBULA and this significantly increased to 31 (p<0.001).
CONCLUSIONS
With a dedicated team, coordinated care and resources, the number of patient visits can be decreased. With proper triaging and communication, the frequency of yearly ED visits was decreased. Balancing metrics comparing the increased burden of phone calls require further investigation.
17:08 - 17:14
SN09-4 (OP)
Charlotta LEVÉN ANDRÉASSON 1, Michaela DELLENMARK-BLOM 1, Marie ANDERSSON 1, Sofia SJÖSTRÖM 1, Giovanni MOSIELLO 2, Sylvia ROOZEN 3, Christian RADMAYR 4, Rien NIJMAN 5, Jean-Marie JOUANNIC 6 and Kate ABRAHAMSSON 7
1) Sahlgrenska University Hospital Queen Silvia Children's Hospital, Department of Paediatric Surgery-Paediatric Urology, Gothenburg, SWEDEN - 2) Bambino Gesù Children's Hospital and Research Institute, Division of Neuro-Urology, Rome, ITALY - 3) International Federation for Spina Bifida and Hydrocephalus, Brussels, International Federation for Spina Bifida and Hydrocephalus, Brussels, BELGIUM - 4) Medical University of Innsbruck, Paediatric Urology, Innsbruck, AUSTRIA - 5) University Medical Center Groningen, Department of Pediatric Urology, Groningen, NETHERLANDS - 6) Service de Médecine Foetale, DMU ORIGYNE, Centre de Référence Maladies Rares Spin@ Hôpital Trousseau, APHP.Sorbonne Médecine Sorbonne Université, Paris, FRANCE - 7) Sahlgrenska University Hospital Queen Silvia Children's Hospital, Department of Pediatric Surgery, Göteborg, SWEDEN
PURPOSE
This study aimed to systematically review the literature on health-related quality of life (HRQoL) studies in children with spina bifida (SB) to help enhance clinical management.
MATERIAL AND METHODS
A guideline working group across eUrogen, ITHACA and EAU used a PRISMA compliant protocol with a literature search in five databases (Embase/Pubmed/PsycInfo/CINAHL/Cochrane Library) to identify HRQoL studies in children with SB from 2016 to March 2023.
RESULTS
Out of 1089 screened articles, 22 articles were identified, total number 1895 children with SB (mean sample-size 87/study range 22-298). The studies covered multiple continents including Europe (n=7), North America (n=7), South America (n=2), Asia (n=4), and Africa (n=2) e.g Lithuania, Poland, Turkey, Belgium, Canada, Brazil, India, Japan, Palestine and Uganda. Assessments were conducted using self-reports (n=10), parent-reports (n=5), or a combination of both (n=7).
Twenty studies used generic HRQoL questionnaires.Six studies described the development and psychometric application of a SB-specific HRQoL-questionnaire, where generic HRQoL-questionnaire was used only to confirm its validity. In 15 studies, generic HRQoL was only descriptively analyzed. Six studies compared HRQoL with healthy norms, all (100%) demonstrated reduced HRQoL in children with SB. In the SB-specific questionnaire, “Bladder and Bowel” was a consistent valid domain across child ages/countries (five studies).
Factors associated with HRQoL were differently investigated. Most prominently, seven studies observed HRQoL was negatively influenced by urinary or fecal incontinence, one intervention study that HRQoL increased after bladder/bowel management in children with SB. In eight studies, worse HRQoL was associated with limited social or family support.
CONCLUSIONS
Generic HRQoL seems impaired in children with SB, primarily due to bladder/bowel dysfunction and low family/social support. Recent studies include the development of a SB-specific HRQoL-questionnaire that can help standardize outcome measurement, improve clinical follow-up care and optimize management of children with SB.
17:14 - 17:20
SN09-5 (OP)
Rosemary GRANT and Debra LAJOIE
Boston Children's Hospital, Urology, Boston, USA
PURPOSE
Hypospadias is a congenital anomaly of the male urethra due to abnormal placement of the meatus anywhere along the urethral groove. Families need comprehensive perioperative education to provide postoperative care including wound and graft care, urinary drainage tube management, pain control as well as emotional support.
MATERIAL AND METHODS
This evidence-based practice project was guided by the development of a PICO question: For male infants diagnosed with hypospadias, what are the best perioperative education practices to prepare parents for surgery and postoperative care?
An electronic literature search of the PubMed and CINAHL database along with cited references was done. Articles published in English within the previous 5 (2019-2025) years were included. The search yielded 40 pediatric specific articles. Preliminary abstract review identified 19 articles for appraisal. Twelve were appraised using the John Hopkins Evidence Based Practice Model for Nursing. Themes included parental distress, decision making, expectations and experiences. No evidence was found to best support parent preoperative preparation for ambulatory urology nurses closely aligned with patients throughout the initial postoperative period through telehealth and in person visits.
RESULTS
No evidence was found that identified best practices for perioperative preparedness for hypospadias surgery. There is a paucity of nursing developed education in the literature. Further research is needed to understand the development of a patient-centered education program to best support parental expectations.