Assessing Patient Centered Urological Care for Spina Bifida: A Collaboration Between the European Association of Urology-European Society for Pediatric Urology (EAU-ESPU) Pediatric Urology Guidelines Panel and the International Federation for Spina Bifida and Hydrocephalus (IFSBH).

Authors

Lisette 't Hoen, Christian Radmayr, Michele Gnech, Carla Bezuidenhout, Allon van Uitert, Marco Castagnetti, Berk Burgu, Fardod O'Kelly, Josine Quaedackers, Yazan Rawashdeh, Selçuk Silay, Anna Bujons, Guy Bogaert, Niklas Pakkasjarvi, Martin Skott, Uchenna Kennedy, Beatriz Bañuelos Marco, Sylvia Roozen

Published in

Neurourology and urodynamics. Jul 27, 2026. Epub Jul 27, 2026.

Abstract

People with spina bifida (SB) require lifelong care from various specialists, with the organization and availability of care differing across Europe. This variation likely impacts care outcomes from a patient perspective. Children with SB have emphasized the importance of researching quality of life (QoL) and sexuality. The European Association of Urology-European Society of Pediatric Urology (EAU-ESPU) guidelines panel aims to ensure optimal care for these children by incorporating patient perspectives into clinical guidelines. The International Federation for Spina Bifida and Hydrocephalus (IFSBH) promotes the rights of children with SB to improve their QoL. In collaboration with the IFSBH, the EAU-ESPU guidelines panel has developed a survey to evaluate the current organization of care, demographic features, and received treatment.
The digital survey was created on Surveymonkey® and included a primary survey on demographic features, medical treatment history, and organization of care. The second part included the QUAlity of Life Assessment in Spina Bifida (QUALAS) questionnaire and the International Index for Erectile Function (IIEF-5) for boys and Female Sexual Function Index (FSFI-6) for girls, both for ages 13 and older. The survey was available in 11 languages.
A total of 281 respondents completed the survey. QUALAS scores reported were all lower compared to standard values. QUALAS-C (Esteem and Independence): mean score 56.0 ± 19.9, (Bladder and Bowel): mean score 56.0 ± 27.7, QUALAS-T (Family and Independence): mean score 60.1 ± 20.3, (Bladder and Bowel): mean score 53.7 ± 25.3. The QoL was assessed across eight domains, all scored below 6 on a 0-10 scale, with the lowest scores for sexuality. Sexuality was assessed with validated questionnaires for 46 respondents. FSFI-6 (Females): Mean score 14.45 ± 8.28, indicating female sexual dysfunction. IIEF-5 (Males): Mean score 17.00 ± 6.03, indicating mild-moderate erectile dysfunction. The assessment of organization of care included catheter and medication use, with notable differences in payment methods among countries. Healthcare provider contact revealed difficulties with varied first points of contact.
The results of the survey demonstrated that respondents with SB experience worse QoL compared to historical cohorts. Decreased sexual function was observed in females with SB, while males exhibited mild erectile dysfunction. This underscores the importance of addressing these topics in both clinical care and research. Variations in care organization were identified which can be used to improve healthcare for people with SB.
NCT06725745.

PMID:
42504464
Bibliographic data and abstract were imported from PubMed on 27 Jul 2026.

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