EAU-ESPU-ERN eUROGEN-ERN ITHACA-ERN ERKNet-IFSBH Guidelines on Spinal Dysraphism in Children and Adolescents: Summary of the Guideline.

Abstract

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.