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EAU-ESPU-ERN eUROGEN-ERN ITHACA-ERN ERKNet-IFSBH Guidelines on Spinal Dysraphism in Children and Adolescents: Summary
Christian Radmayr1, Kate Abrahamsson2, Guy Bogaert3
1Paediatric Urology, Medical University, Innsbruck, Austria.
Insights
This guideline offers updated, evidence-based management for pediatric neurogenic bladder in spinal dysraphism. It integrates diverse stakeholder input for comprehensive care, improving quality of life and preventing complications.
Area of Science:
- Pediatric Urology
- Neuroscience
- Public Health Policy
Background:
- Neurogenic bladder in children presents complex management challenges.
- Traditional guidelines may lack diverse stakeholder perspectives, impacting care quality.
- A novel approach integrates pediatric urologists, nephrologists, psychiatrists, and patient representatives from the outset.
Purpose of the Study:
- To develop updated, evidence-based guidelines for managing neurogenic bladder in children and adolescents with spinal dysraphism.
- To incorporate a multidisciplinary and stakeholder-inclusive approach in guideline development.
- To provide comprehensive recommendations for lifelong management and complication prevention.
Main Methods:
- A comprehensive literature search was conducted from 2020 to 2024.
- Recommendations were developed and rated based on evidence quality, benefit/harm ratio, and patient preferences.
- Collaboration with European Reference Networks (eUrogen, ITHACA, ERKNet), ESPU, and IFSBH ensured broad input.
Main Results:
- Spinal cord disorders significantly impact urinary, renal, bowel, sexual, and fertility functions.
- Lifelong management is crucial to preserve quality of life and prevent complications like urinary tract deterioration.
- Timely diagnosis, multidisciplinary management, and individualized treatment strategies, including urodynamic studies, are critical.
Conclusions:
- This 2025 guideline provides updated, evidence-based recommendations for managing pediatric spinal dysraphism.
- The integrated, multidisciplinary approach ensures comprehensive care addressing medical, functional, and psychosocial aspects.
- Continuous monitoring and follow-up are emphasized for sustained patient well-being.
Background And Objective:
Neurogenic bladder in children and adolescents presents complex challenges requiring comprehensive management strategies. Traditional guideline development often lacks input from diverse stakeholders, potentially overlooking crucial aspects of care. We present a novel approach to guideline development that integrates perspectives from pediatric urologists, nephrologists, psychiatrists, and patient representatives from the very beginning of the guideline development process. For this purpose, the European Association of Urology (EAU) Paediatric Urology Guidelines Panel worked together with European Reference Networks (eUrogen, ITHACA, ERKNet), the ESPU (European Society for Paediatric Urology), as well as the International Federation for Spina Bifida and Hydrocephalus (IFSBH), a professional organization with global coverage for people living with disabilities.
Methods:
A broad literature search was performed covering the timeframe from 2020 to 2024. Recommendations were developed and rated as strong or weak, based on the quality of the evidence, benefit/ harm ratio, and potential patient preferences.
Key Findings And Limitations:
Spinal cord disorders have a profound impact on urinary, renal, and bowel functions, as well as on sexuality and fertility issues, necessitating lifelong management to preserve quality of life and prevent complications, such as urinary tract deterioration in individuals with spinal dysraphism. Timely diagnosis and appropriate multidisciplinary therapeutic management are critical, with comprehensive clinical evaluations-such as urodynamic studies-playing a central role. Treatment strategies should be individualized, incorporating a multidisciplinary approach that addresses not only medical and functional aspects but also considerations related to sexuality and fertility. Continuous monitoring and follow-up care underscore the significance of sustained management for patients with spinal dysraphism.
Conclusions And Clinical Implications:
This summary of the 2025 EAU/ESPU/ERN eUrogen/ERN ITHACA/ERN ErkNet/IFSBH guideline provides updated guidance for evidence-based management of children and adolescents with spinal dysraphism.
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