{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,14]],"date-time":"2026-04-14T23:31:04Z","timestamp":1776209464913,"version":"3.50.1"},"reference-count":38,"publisher":"Georg Thieme Verlag KG","issue":"03","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Eur J Pediatr Surg"],"published-print":{"date-parts":[[2023,6]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>This study aimed at evaluating how transition of care is currently being organized in the European Reference Networks (ERNs) health care providers (HCPs) in pediatric areas and in the Anorectal Malformation Network (ARM-Net) Consortium hospitals. An online questionnaire was sent to a total of 80 surgeons, members of or affiliated members of three networks: ARM-Net Consortium, ERN eUROGEN, and ERN ERNICA. Complete information were obtained for 45 HCPs, most of which deal with transition and still see a few adult patients (ca. 10%). Gynecological, gastroenterological, urological, colorectal, and continence issues were the major problems described by adult patients to their physicians, and in line with these prevalent complaints, they are referred to the appropriate adult specialists. Forty percent of patients complain about sexual and fertility problems, but the percentage of andrologists and sexologists involved in the caring of adult patients with ARM\/Hirschsprung's disease is low, just above 10.9%. Most hospitals deal with transition, but three basic criteria (i.e., presence of: [1] an official written transitional program, [2] a transitional coordinator, and [3] written information on transition to be handled to patients) are jointly met only by six HCPs. According to the responders, the most important issue requiring improvement is the lack of interest and of specific preparation by adult specialists. The overall results of this exploratory survey confirm the need for the development of comprehensive programs for transition in these rare and complex diseases, and identify the hospitals that, in collaboration with the networks, could share best practices in organizing structured transitional pathways and well follow-ups.<\/jats:p>","DOI":"10.1055\/s-0042-1749212","type":"journal-article","created":{"date-parts":[[2022,7,13]],"date-time":"2022-07-13T22:41:06Z","timestamp":1657752066000},"page":"191-197","source":"Crossref","is-referenced-by-count":10,"title":["The Transition of Care for Patients with Anorectal Malformations and Hirschsprung Disease: A European Survey"],"prefix":"10.1055","volume":"33","author":[{"given":"Cristiano","family":"Violani","sequence":"additional","affiliation":[{"name":"Department of Psychology, Faculty of Medicine and Psychology, University of Rome Sapienza, Roma, Lazio, Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Caterina","family":"Grano","sequence":"additional","affiliation":[{"name":"Department of Psychology, Faculty of Medicine and Psychology, University of Rome Sapienza, Roma, Lazio, Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mariana","family":"Fernandes","sequence":"additional","affiliation":[{"name":"Department of Psychology, Faculty of Medicine and Psychology, University of Rome Sapienza, Roma, Lazio, Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alessio Pini","family":"Prato","sequence":"additional","affiliation":[{"name":"Umberto Bosio Center for Digestive Diseases, The Children Hospital - AO SS Antonio e Biagio e Cesare Arrigo, Alessandria, Piedmont, Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Wout F. J.","family":"Feitz","sequence":"additional","affiliation":[{"name":"Department of Pediatric Urology, Radboud Universiteit Nijmegen, Nijmegen, Gelderland, the Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rene","family":"Wijnen","sequence":"additional","affiliation":[{"name":"Department of Pediatric Surgery, Erasmus MC Sophia, Rotterdam, the Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michelle","family":"Battye","sequence":"additional","affiliation":[{"name":"Department of Pediatric Urology, Radboud Universiteit Nijmegen, Nijmegen, Gelderland, the Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nicole","family":"Schwarzer","sequence":"additional","affiliation":[{"name":"SoMA e.V. - Patient Organization, Munich, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Annette","family":"Lemli","sequence":"additional","affiliation":[{"name":"SoMA e.V. - Patient Organization, 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Witwatersrand tertiary hospitals, South Africa","volume":"25","author":"A Theron","year":"2015","journal-title":"Eur J Pediatr Surg"},{"issue":"12","key":"ref3","doi-asserted-by":"crossref","first-page":"1161","DOI":"10.1007\/s00383-007-2023-6","article-title":"Prevalence estimation of anorectal malformations using German diagnosis related groups system","volume":"23","author":"E Jenetzky","year":"2007","journal-title":"Pediatr Surg Int"},{"issue":"02","key":"ref4","doi-asserted-by":"crossref","first-page":"171","DOI":"10.1002\/tera.1420320204","article-title":"Hirschsprung disease in a large birth cohort","volume":"32","author":"D Spouge","year":"1985","journal-title":"Teratology"},{"issue":"01","key":"ref5","doi-asserted-by":"crossref","first-page":"197","DOI":"10.1016\/j.jpedsurg.2004.09.052","article-title":"Hirschsprung's disease in Japan: analysis of 3852 patients based on a nationwide survey in 30 years","volume":"40","author":"S Suita","year":"2005","journal-title":"J Pediatr Surg"},{"issue":"12","key":"ref6","doi-asserted-by":"crossref","first-page":"1027","DOI":"10.1007\/s00383-009-2502-z","article-title":"Bowel management for the treatment of pediatric fecal incontinence","volume":"25","author":"A Bischoff","year":"2009","journal-title":"Pediatr Surg Int"},{"issue":"S 02","key":"ref7","doi-asserted-by":"crossref","first-page":"S79","DOI":"10.1097\/MPG.0b013e3181a15b5e","article-title":"Congenital anorectal malformations: anything new?","volume":"48","author":"R J Rintala","year":"2009","journal-title":"J Pediatr Gastroenterol Nutr"},{"issue":"02","key":"ref8","doi-asserted-by":"crossref","first-page":"154","DOI":"10.1053\/j.sempedsurg.2009.11.020","article-title":"A practical approach to the management of pediatric fecal incontinence","volume":"19","author":"A Bischoff","year":"2010","journal-title":"Semin Pediatr Surg"},{"issue":"03","key":"ref9","doi-asserted-by":"crossref","first-page":"194","DOI":"10.1136\/adc.71.3.194","article-title":"Social and emotional impact of faecal incontinence after surgery for anorectal abnormalities","volume":"71","author":"L Ludman","year":"1994","journal-title":"Arch Dis Child"},{"issue":"07","key":"ref10","doi-asserted-by":"crossref","first-page":"683","DOI":"10.1007\/s00383-010-2626-1","article-title":"Urological problems or fecal continence during long-term follow-up of patients with anorectal malformation","volume":"26","author":"E Senel","year":"2010","journal-title":"Pediatr Surg Int"},{"issue":"03","key":"ref11","doi-asserted-by":"crossref","first-page":"398","DOI":"10.1111\/j.1464-410X.2009.09031.x","article-title":"Anorectal malformations: what happens in adulthood?","volume":"106","author":"M C Davies","year":"2010","journal-title":"BJU Int"},{"issue":"02","key":"ref12","doi-asserted-by":"crossref","first-page":"160","DOI":"10.1053\/j.sempedsurg.2009.11.021","article-title":"Outcome of anorectal malformations and Hirschsprung's disease beyond childhood","volume":"19","author":"R J 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J Hanneman","year":"2001","journal-title":"Dis Colon Rectum"},{"issue":"05","key":"ref16","doi-asserted-by":"crossref","first-page":"899","DOI":"10.1016\/j.jpedsurg.2020.01.038","article-title":"Pull-through procedure in children with Hirschsprung disease: a nationwide analysis on postoperative outcomes","volume":"55","author":"H J Quiroz","year":"2020","journal-title":"J Pediatr Surg"},{"issue":"04","key":"ref17","doi-asserted-by":"crossref","first-page":"612","DOI":"10.1016\/j.jpedsurg.2007.10.007","article-title":"Hirschsprung disease: do risk factors of poor surgical outcome exist?","volume":"43","author":"A Pini Prato","year":"2008","journal-title":"J Pediatr Surg"},{"issue":"09","key":"ref18","doi-asserted-by":"crossref","first-page":"1458","DOI":"10.1016\/j.jpedsurg.2017.01.001","article-title":"A Nordic multicenter survey of long-term bowel function after transanal endorectal pull-through in 200 patients with rectosigmoid Hirschsprung disease","volume":"52","author":"K Bj\u00f8rnland","year":"2017","journal-title":"J Pediatr Surg"},{"issue":"11","key":"ref19","doi-asserted-by":"crossref","first-page":"2375","DOI":"10.1016\/j.jpedsurg.2020.04.010","article-title":"Bowel function after transanal endorectal pull-through for Hirschsprung disease - does outcome improve over time?","volume":"55","author":"M V Fosby","year":"2020","journal-title":"J Pediatr Surg"},{"issue":"02","key":"ref20","doi-asserted-by":"crossref","first-page":"257","DOI":"10.1016\/j.jpedsurg.2020.05.015","article-title":"Reaching adulthood with Hirschsprung's disease: patient experiences and recommendations for transitional care","volume":"56","author":"A T Hoel","year":"2021","journal-title":"J Pediatr Surg"},{"issue":"08","key":"ref21","doi-asserted-by":"crossref","first-page":"793","DOI":"10.1007\/s00383-012-3120-8","article-title":"Postoperative complications in adults with anorectal malformation: a need for transition","volume":"28","author":"D Schmidt","year":"2012","journal-title":"Pediatr Surg Int"},{"issue":"01","key":"ref22","doi-asserted-by":"crossref","first-page":"96","DOI":"10.1007\/s10350-005-0216-4","article-title":"Explaining change over time in quality of life of adult patients with anorectal malformations or Hirschsprung's disease","volume":"49","author":"E E Hartman","year":"2006","journal-title":"Dis Colon Rectum"},{"issue":"05","key":"ref23","doi-asserted-by":"crossref","first-page":"488","DOI":"10.1097\/MPG.0000000000001199","article-title":"Transitions in pediatric gastroenterology: results of a national provider survey","volume":"63","author":"R Bensen","year":"2016","journal-title":"J Pediatr Gastroenterol Nutr"},{"issue":"01","key":"ref24","doi-asserted-by":"crossref","first-page":"4","DOI":"10.1016\/j.jadohealth.2005.03.011","article-title":"Young adult patients with a history of pediatric disease: impact on course of life and transition into adulthood","volume":"39","author":"H Stam","year":"2006","journal-title":"J Adolesc Health"},{"issue":"01","key":"ref25","doi-asserted-by":"crossref","first-page":"43","DOI":"10.3233\/PRM-140269","article-title":"Transition and transfer of adolescents and young adults with pediatric onset chronic disease: the patient and parent perspective","volume":"7","author":"S M Fernandes","year":"2014","journal-title":"J Pediatr Rehabil Med"},{"issue":"02","key":"ref26","doi-asserted-by":"crossref","first-page":"210","DOI":"10.1097\/01.mpg.0000168993.21557.5d","article-title":"Anorectal malformations: does healthcare meet the needs?","volume":"41","author":"E E Hartman","year":"2005","journal-title":"J Pediatr Gastroenterol Nutr"},{"issue":"09","key":"ref27","doi-asserted-by":"crossref","first-page":"1722","DOI":"10.1016\/j.jpedsurg.2018.02.057","article-title":"Reality check: what happens when patients with anorectal malformations grow up? 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