{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,27]],"date-time":"2026-07-27T08:07:19Z","timestamp":1785139639200,"version":"3.55.0"},"reference-count":17,"publisher":"Wiley","license":[{"start":{"date-parts":[[2026,7,27]],"date-time":"2026-07-27T00:00:00Z","timestamp":1785110400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"},{"start":{"date-parts":[[2026,7,27]],"date-time":"2026-07-27T00:00:00Z","timestamp":1785110400000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/100006947","name":"SurveyMonkey","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100006947","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Neurourology and Urodynamics"],"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Introduction &amp; Objectives<\/jats:title>\n                    <jats:p>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\u2212European Society of Pediatric Urology (EAU\u2212ESPU) 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\u2212ESPU guidelines panel has developed a survey to evaluate the current organization of care, demographic features, and received treatment.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Materials &amp; Methods<\/jats:title>\n                    <jats:p>The digital survey was created on Surveymonkey\u00ae\u00a0and 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\u20105) for boys and Female Sexual Function Index (FSFI\u20106) for girls, both for ages 13 and older. The survey was available in 11 languages.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>A total of 281 respondents completed the survey. QUALAS scores reported were all lower compared to standard values. QUALAS\u2010C (Esteem and Independence): mean score 56.0\u2009\u00b1\u200919.9, (Bladder and Bowel): mean score 56.0\u2009\u00b1\u200927.7, QUALAS\u2010T (Family and Independence): mean score 60.1\u2009\u00b1\u200920.3, (Bladder and Bowel): mean score 53.7\u2009\u00b1\u200925.3. The QoL was assessed across eight domains, all scored below 6 on a 0\u221210 scale, with the lowest scores for sexuality. Sexuality was assessed with validated questionnaires for 46 respondents. FSFI\u20106 (Females): Mean score 14.45\u2009\u00b1\u20098.28, indicating female sexual dysfunction. IIEF\u20105 (Males): Mean score 17.00\u2009\u00b1\u20096.03, indicating mild\u2010moderate 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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                    <jats:p>\n                      <jats:bold>Trial Registration:<\/jats:bold>\n                      NCT06725745.\n                    <\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/nau.70386","type":"journal-article","created":{"date-parts":[[2026,7,27]],"date-time":"2026-07-27T07:57:06Z","timestamp":1785139026000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Assessing Patient Centered Urological Care for Spina Bifida: A Collaboration Between the European Association of Urology\u2013European Society for Pediatric Urology (EAU\u2212ESPU) Pediatric Urology Guidelines Panel and the International Federation for Spina Bifida and Hydrocephalus (IFSBH)"],"prefix":"10.1002","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-4882-4311","authenticated-orcid":false,"given":"Lisette","family":"\u2018t Hoen","sequence":"first","affiliation":[{"name":"Department of Pediatric Urology Erasmus Medical Center Rotterdam the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9188-4651","authenticated-orcid":false,"given":"Christian","family":"Radmayr","sequence":"additional","affiliation":[{"name":"Pediatric Urology Medical University of Innsbruck Innsbruck Austria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2495-1938","authenticated-orcid":false,"given":"Michele","family":"Gnech","sequence":"additional","affiliation":[{"name":"Department of Paediatric Urology, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico Milan Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carla","family":"Bezuidenhout","sequence":"additional","affiliation":[{"name":"Guidelines Office European Association of Urology Arnhem the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0923-2401","authenticated-orcid":false,"given":"Allon","family":"van Uitert","sequence":"additional","affiliation":[{"name":"Department of Urology Radboud University Medical Centre Nijmegen the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1282-1351","authenticated-orcid":false,"given":"Marco","family":"Castagnetti","sequence":"additional","affiliation":[{"name":"Department of Surgical, Oncological and Gastroenterological Sciences University of Padova Padua Italy"},{"name":"Pediatric Urology Unit Bambino Ges\u00f9 Children Hospital and Research Center Rome Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1546-1179","authenticated-orcid":false,"given":"Berk","family":"Burgu","sequence":"additional","affiliation":[{"name":"Department of Pediatric Urology Ankara University School of Medicine Ankara Turkey"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4992-7689","authenticated-orcid":false,"given":"Fardod","family":"O'Kelly","sequence":"additional","affiliation":[{"name":"Division of Paediatric Urology Beacon Hospital Dublin &amp; University College Dublin Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7873-6216","authenticated-orcid":false,"given":"Josine","family":"Quaedackers","sequence":"additional","affiliation":[{"name":"Department of Urology University Medical Center Groningen Groningen the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5517-2980","authenticated-orcid":false,"given":"Yazan","family":"Rawashdeh","sequence":"additional","affiliation":[{"name":"Department of Urology Section of Pediatric Urology Aarhus Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5091-9654","authenticated-orcid":false,"given":"Sel\u00e7uk","family":"Silay","sequence":"additional","affiliation":[{"name":"Department of Urology, Division of Pediatric Urology Biruni University Istanbul Turkey"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3995-9329","authenticated-orcid":false,"given":"Anna","family":"Bujons","sequence":"additional","affiliation":[{"name":"Urology Department, Division of Pediatric Urology Fundaci\u00f3 Puigvert Universitat Auton\u00f2ma Barcelona Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5989-1253","authenticated-orcid":false,"given":"Guy","family":"Bogaert","sequence":"additional","affiliation":[{"name":"Department of Urology University of Leuven Leuven Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1798-3416","authenticated-orcid":false,"given":"Niklas","family":"Pakkasjarvi","sequence":"additional","affiliation":[{"name":"Department of Pediatric Surgery, New Children's Hospital Helsinki University Hospital Helsinki Finland"},{"name":"Department of Pediatric Surgery, Section of Urology University Children's Hospital Uppsala Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2048-4623","authenticated-orcid":false,"given":"Martin","family":"Skott","sequence":"additional","affiliation":[{"name":"Department of Urology Section of Pediatric Urology Aarhus Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8662-5033","authenticated-orcid":false,"given":"Uchenna","family":"Kennedy","sequence":"additional","affiliation":[{"name":"Department of Pediatric Urology University Children's Hospital Zurich Zurich Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9333-9358","authenticated-orcid":false,"given":"Beatriz","family":"Ba\u00f1uelos Marco","sequence":"additional","affiliation":[{"name":"Department of Urology, Renal Transplant Division University Hospital El Clinico Madrid Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0118-5882","authenticated-orcid":false,"given":"Sylvia","family":"Roozen","sequence":"additional","affiliation":[{"name":"International Federation for Spina Bifida and Hydrocephalus, Governor Kremers Centre Maastricht University Maastricht the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,7,27]]},"reference":[{"key":"e_1_2_12_2_1","doi-asserted-by":"publisher","DOI":"10.1002\/nau.24024"},{"key":"e_1_2_12_3_1","doi-asserted-by":"publisher","DOI":"10.1111\/cch.12367"},{"key":"e_1_2_12_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpurol.2023.03.002"},{"key":"e_1_2_12_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.urology.2023.11.028"},{"key":"e_1_2_12_6_1","unstructured":"C.Radmayr \u201cEAU Pediatric Urology Guidelines EAU Guidelines \u201d presented at the EAU Annual Congress Milan 2023."},{"key":"e_1_2_12_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.urology.2015.09.027"},{"key":"e_1_2_12_8_1","doi-asserted-by":"publisher","DOI":"10.5173\/ceju.2017.1195"},{"key":"e_1_2_12_9_1","doi-asserted-by":"publisher","DOI":"10.2196\/13490"},{"issue":"3","key":"e_1_2_12_10_1","doi-asserted-by":"crossref","first-page":"1139","DOI":"10.1111\/j.1743-6109.2009.01635.x","article-title":"Original Research\u2014Outcomes Assessment: Development and Validation of a 6\u2010Item Version of the Female Sexual Function Index (FSFI) as a Diagnostic Tool for Female Sexual Dysfunction","volume":"7","author":"Isidori A. 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