Transitional Care for Patients with Congenital Colorectal Diseases : An EUPSA Network Office, ERNICA, and eUROGEN Joint Venture

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dc.contributor.authorde Beaufort, Cunera M C
dc.contributor.authorAminoff, Dalia
dc.contributor.authorde Blaauw, Ivo
dc.contributor.authorTransition of Care study group
dc.contributor.authorKakar, Mohit
dc.date.accessioned2023-11-08T14:25:01Z
dc.date.available2023-11-08T14:25:01Z
dc.date.issued2023-12
dc.descriptionPublisher Copyright: © 2023 The Author(s)
dc.description.abstractBACKGROUND: Transition of care (TOC; from childhood into adulthood) of patients with anorectal malformations (ARM) and Hirschsprung disease (HD) ensures continuation of care for these patients. The aim of this international study was to assess the current status of TOC and adult care (AC) programs for patients with ARM and HD. METHODS: A survey was developed by members of EUPSA, ERN eUROGEN, and ERNICA, including patient representatives (ePAGs), comprising of four domains: general information, general questions about transition to adulthood, and disease-specific questions regarding TOC and AC programs. Recruitment of centres was done by the ERNs and EUPSA, using mailing lists and social media accounts. Only descriptive statistics were reported. RESULTS: In total, 82 centres from 21 different countries entered the survey. Approximately half of them were ERN network members. Seventy-two centres (87.8%) had a self-reported area of expertise for both ARM and HD. Specific TOC programs were installed in 44% of the centres and AC programs in 31% of these centres. When comparing centres, wide variation was observed in the content of the programs. CONCLUSION: Despite the awareness of the importance of TOC and AC programs, these programs were installed in less than 50% of the participating centres. Various transition and AC programs were applied, with considerable heterogeneity in implementation, content and responsible caregivers involved. Sharing best practice examples and taking into account local and National Health Care Programs might lead to a better continuation of care in the future. LEVEL OF EVIDENCE: III.en
dc.description.statusPeer reviewed
dc.format.extent8
dc.format.extent292007
dc.identifier.citationde Beaufort, C M C, Aminoff, D, de Blaauw, I, Transition of Care study group & Kakar, M 2023, 'Transitional Care for Patients with Congenital Colorectal Diseases : An EUPSA Network Office, ERNICA, and eUROGEN Joint Venture', Journal of Pediatric Surgery, vol. 58, no. 12, pp. 2319-2326. https://doi.org/10.1016/j.jpedsurg.2023.06.008
dc.identifier.doi10.1016/j.jpedsurg.2023.06.008
dc.identifier.issn0022-3468
dc.identifier.urihttps://dspace.rsu.lv/jspui/handle/123456789/14948
dc.identifier.urlhttp://www.scopus.com/inward/record.url?scp=85164615214&partnerID=8YFLogxK
dc.language.isoeng
dc.relation.ispartofJournal of Pediatric Surgery
dc.rightsinfo:eu-repo/semantics/openAccess
dc.subjectAnorectal malformation
dc.subjectHirschsprung disease
dc.subjectTransition of care
dc.subjectAdult care
dc.subject3.2 Clinical medicine
dc.subject1.1. Scientific article indexed in Web of Science and/or Scopus database
dc.titleTransitional Care for Patients with Congenital Colorectal Diseases : An EUPSA Network Office, ERNICA, and eUROGEN Joint Ventureen
dc.type/dk/atira/pure/researchoutput/researchoutputtypes/contributiontojournal/article

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