Assessing Patient Centered Urological Care for Spina Bifida: a Collaboration Between the EAU-ESPU Pediatric Urology Guidelines Panel and the IFSBH.

Children with spina bifida require care from various medical and paramedical specialists throughout their life. The availability and organization of the care needed differs between the European countries. The EAU and IFSBH are both organizations with the aim to improve patient care and clinical outcomes for children with spina bifida.

The investigators have set up a collaboration to evaluate the differences in organization of care and clinical treatment received and how this affects outcomes with regard to quality of life and sexuality.

A digital survey has been constructed which will be distributed among children and adolescents with spina bifida and their caregivers. The IFSBH and national patient organizations will send out invitations to their members. Children and adolescents from 8 - 18 years of age with spina bifida are eligible for inclusion.

The survey includes a primary survey developed in collaboration between panel members of the EAU pediatric urology guidelines and patient representatives. The second part includes validated questionnaires to evaluate Quality of life with the QUALAS and sexual function with the IIEF-5/FSFI-6 for boys/girls respectively.

Primary outcome will be the quality of life in children and adolescents with spina bifida. The team will evaluate if their demographic differences influence the quality of life and if differences are seen between the different European countries. Secondary outcomes include differences in sexual function, organization of care, treatment received, treatment options available, with also a focus on differences between the different European countries.

The results of this survey will be evaluated and interpreted within a sounding board group consisting of children/adolescents/adults with spina bifida, patient representatives from IFSBH and panel members of the EAU Pediatric Urology guidelines panel. Finally, the interpreted results will be used to update the EAU Pediatric Urology guidelines to make these more patient centered.

There are no known risks of participating in the study given the fact that participation includes only completion of questionnaires and data about standard of care. Furthermore, the study is completely voluntary and the results will be completely anonymous.