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.
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.
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.
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.
European urology open science. 2026 Apr 29*** epublish ***
Christian Radmayr, Kate Abrahamsson, Guy Bogaert, Michaela Dellenmark-Blom, Wout Feitz, Anju Goyal, Jean-Marie Jouannic, Rianne Lammers, Michal Maternik, Giovanni Mosiello, Sylvia Roozen, Ulla Sillen, Raimund Stein, Serdar Tekgül, Lisette 't Hoen, Alexander Von Gontard, Johan Vande Walle, Yuhong Yuan, Rien J M Nijman
Paediatric Urology, Medical University, Innsbruck, Austria., Children's and Women's Health, Sahlgrenska University Hospital, Gothenburg, Sweden., Department of Urology, University of Leuven, Leuven, Belgium., Department of Pediatrics, Institute of Clinical Sciences, Sahlgrenska Academy, Department of Pediatric Surgery, Queen Silvia Children's Hospital, Sahlgrenska University Hospital, Gothenburg, Sweden., Paediatric Urology, Radboudumc Amalia Children's Hospital, Nijmegen, The Netherlands., Royal Manchester Children's Hospital, Paediatric Urology, Manchester, United Kingdom., APHP Sorbonne University, Fetal Medicine Department, Paris, France., Department of Urology, University Medical Center Groningen, Groningen, The Netherlands., Pediatrics, Nephrology and Hypertension, Medical University of Gdansk, ERKNet Centre University Clinical Centre (UCK) Gdansk, Poland., Division of Neuro-Urology, Bambino Gesù Children's Hospital and Research Institute, Rome, Italy., International Federation for Spina Bifida and Hydrocephalus, Brussels, Belgium., Queen Silvia Children's Hospital, Institute of Clinical Sciences, Department of Pediatric Surgery, Pediatric Uronephrology Center, Gothenburg, Sweden., University Medical Center, Medical Faculty Mannheim, Heidelberg University, Center for Pediatric Adolescent and Reconstructive Urology, Mannheim, Germany., Department of Urology, Division of Pediatric Urology, Hacettepe University, Ankara, Turkey., Department of Pediatric Urology, Erasmus Medical Center, Rotterdam, The Netherlands., Parent-Child and Adolescent Department, Hochgebirgsklinik Davos, Davos, Switzerland., Ghent University, ERKNet Centre - Ghent, Ghent, Belgium., Department of Medicine, London Health Science Centre, London, Ontario, Canada.