{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,27]],"date-time":"2026-07-27T18:16:09Z","timestamp":1785176169009,"version":"3.55.0"},"reference-count":15,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2019,5,18]],"date-time":"2019-05-18T00:00:00Z","timestamp":1558137600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Neurourology and Urodynamics"],"published-print":{"date-parts":[[2019,8]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Aims<\/jats:title><jats:p>The Paediatric Urology Guidelines Panel reports initial experience with patient involvement in spina bifida patient groups to gather information on their awareness of the guidelines and reflection of guideline recommendations.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>The survey was delivered to spina bifida patients\/parents via the national society groups in Turkey, Germany, and The Netherlands. Questions included demographic features, medical status, awareness, and agreement on the recommendations given in the guidelines and future expectations.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>A total of 291 patients from 3 countries responded to the survey. Mean age was 13.9\u2009\u00b1\u200912.2 years, male\/female ratio 138\/151, 75% of all surveys were completed by the caregivers. The medication was taken by 78% of patients (64% anticholinergics). Complete dryness rates for urine and stool were 24% and 47%, respectively. The agreement rates on the recommendations regarding urodynamics, intermittent catheterization, anticholinergics drug use, bowel management, and life\u2010long follow\u2010up were 97%, 82%, 91%, 77%, and 98%, respectively. Only 8% of responders were aware of the European Association of Urology\/European Society for Pediatric Urology guidelines. The priorities of patients for future expectations were as the following: quality of life (QoL), surgical techniques, development of new medications and sexuality\/fertility issues. Male spina bifida patients preferred new medications and sex\/fertility issues more, whereas females favored QoL issues improvement more.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Although the native language of the involved patients was different from English, awareness of guidelines was 8%. The general approval of the recommendations given in the guidelines is quite high. The national society groups showed a great interest to get involved in the creation of the guidelines\u00a0to improve health care for spina bifida patients.<\/jats:p><\/jats:sec>","DOI":"10.1002\/nau.24024","type":"journal-article","created":{"date-parts":[[2019,5,18]],"date-time":"2019-05-18T16:49:11Z","timestamp":1558198151000},"page":"1625-1631","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":8,"title":["Are EAU\/ESPU pediatric urology guideline recommendations on neurogenic bladder well received by the patients? Results of a survey on awareness in spina bifida patients and caregivers"],"prefix":"10.1002","volume":"38","author":[{"given":"Hasan S.","family":"Dogan","sequence":"first","affiliation":[{"name":"Department of Urology, Division of Pediatric Urology Hacettepe University Faculty of Medicine Ankara Turkey"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3217-5089","authenticated-orcid":false,"given":"Raimund","family":"Stein","sequence":"additional","affiliation":[{"name":"Department of Pediatric, Adolescent and Reconstructive Urology Heidelberg University Mannheim Germany"},{"name":"University of Medical Center Mannheim Mannheim Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lisette A.","family":"\u2018T Hoen","sequence":"additional","affiliation":[{"name":"Department of Urology Erasmus Medical Center Rotterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Guy","family":"Bogaert","sequence":"additional","affiliation":[{"name":"Department of Urology University Hospitals of the KU Leuven Leuven Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rien J. M.","family":"Nijman","sequence":"additional","affiliation":[{"name":"Department of Urology University Medical Center Groningen Groningen The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Serdar","family":"Tekgul","sequence":"additional","affiliation":[{"name":"Department of Urology, Division of Pediatric Urology Hacettepe University Faculty of Medicine Ankara Turkey"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Josine","family":"Quaedackers","sequence":"additional","affiliation":[{"name":"Department of Urology University Medical Center Groningen Groningen The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mesrur S.","family":"Silay","sequence":"additional","affiliation":[{"name":"Division of Pediatric Urology, Istanbul Memorial Hospital Istanbul Gelisim University Istanbul Turkey"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christian","family":"Radmayr","sequence":"additional","affiliation":[{"name":"Department of Urology Medical University Innsbruck Innsbruck Austria"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2019,5,18]]},"reference":[{"key":"e_1_2_6_1_2_1","doi-asserted-by":"publisher","DOI":"10.1002\/nau.23511"},{"key":"e_1_2_6_1_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpurol.2014.11.024"},{"key":"e_1_2_6_1_4_1","doi-asserted-by":"publisher","DOI":"10.1002\/nau.23053"},{"key":"e_1_2_6_1_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.12442"},{"key":"e_1_2_6_1_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.urolonc.2016.09.007"},{"key":"e_1_2_6_1_7_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41393-017-0028-0"},{"key":"e_1_2_6_1_8_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12894-017-0280-9"},{"key":"e_1_2_6_1_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ucl.2017.04.002"},{"key":"e_1_2_6_1_10_1","doi-asserted-by":"publisher","DOI":"10.1177\/2054270417738511"},{"key":"e_1_2_6_1_11_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.urolonc.2017.07.002"},{"key":"e_1_2_6_1_12_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.juro.2018.02.3101"},{"key":"e_1_2_6_1_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0022-5347(17)35587-8"},{"key":"e_1_2_6_1_14_1","doi-asserted-by":"publisher","DOI":"10.1159\/000049841"},{"key":"e_1_2_6_1_15_1","doi-asserted-by":"publisher","DOI":"10.3233\/PRM-170462"},{"key":"e_1_2_6_1_16_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ucl.2017.04.015"}],"container-title":["Neurourology and Urodynamics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/nau.24024","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/nau.24024","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/nau.24024","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,7]],"date-time":"2023-09-07T01:22:04Z","timestamp":1694049724000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/nau.24024"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,5,18]]},"references-count":15,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2019,8]]}},"alternative-id":["10.1002\/nau.24024"],"URL":"https:\/\/doi.org\/10.1002\/nau.24024","archive":["Portico"],"relation":{},"ISSN":["0733-2467","1520-6777"],"issn-type":[{"value":"0733-2467","type":"print"},{"value":"1520-6777","type":"electronic"}],"subject":[],"published":{"date-parts":[[2019,5,18]]},"assertion":[{"value":"2019-02-11","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2019-04-22","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2019-05-18","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}