Transitional Care for Patients with Congenital Colorectal Diseases: An EUPSA Network Office, ERNICA, and eUROGEN Joint Venture.
Adult care
Anorectal malformation
Hirschsprung disease
Transition of care
Journal
Journal of pediatric surgery
ISSN: 1531-5037
Titre abrégé: J Pediatr Surg
Pays: United States
ID NLM: 0052631
Informations de publication
Date de publication:
Dec 2023
Dec 2023
Historique:
received:
28
04
2023
revised:
30
05
2023
accepted:
11
06
2023
medline:
8
11
2023
pubmed:
13
7
2023
entrez:
12
7
2023
Statut:
ppublish
Résumé
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. 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. 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. 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. III.
Sections du résumé
BACKGROUND
BACKGROUND
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
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
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
CONCLUSIONS
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
METHODS
III.
Identifiants
pubmed: 37438237
pii: S0022-3468(23)00368-8
doi: 10.1016/j.jpedsurg.2023.06.008
pii:
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
2319-2326Investigateurs
Olivier Abbo
(O)
Rossella Angotti
(R)
Sanja Sindjic Antunovic
(SS)
Stefan Anzelewicz
(S)
Christoph Arneitz
(C)
Marion Arnold
(M)
Zaki Assi
(Z)
Emrah Aydin
(E)
Quentin Ballouhey
(Q)
Patricia Barila
(P)
Sonia Basson
(S)
Manuel Besendorfer
(M)
Antonio Di Cesare
(A)
Anne Dariel
(A)
Inga Dekeryte
(I)
Ivona Djordjevic
(I)
Vincenzo Domenichelli
(V)
Lise Duranteau
(L)
Cigdem Durakbasa
(C)
Anne-Karoline Ebert
(AK)
Verena Ellerkamp
(V)
Francesco Fascetti Leon
(FF)
Margit Fisch
(M)
Araceli García Vazquez
(AG)
Christoph Gielok
(C)
Gulnur Gollu Bahadir
(GG)
Frank-Martin Haecker
(FM)
Gundela Holmdahl
(G)
Sabine Irtan
(S)
Ceri Jones
(C)
Mohit Kakar
(M)
Ali Keshtgar
(A)
Kolja Kvist
(K)
Francesco Laconi
(F)
Marie Laurance
(M)
Eduardo Lopez Candel
(EL)
Johanna Ludwiczek
(J)
Barbara Ludwikowski
(B)
Francesco Macchini
(F)
Mark Malota
(M)
Lucas Matthyssens
(L)
Benjamin Martin
(B)
Leopoldo Martinez
(L)
Paola Midrio
(P)
Marc Miserez
(M)
Giovanni Mosiello
(G)
Francisco Murcia Pascual
(FM)
Bernardo Nunez
(B)
Roger Olén
(R)
Can İhsan Öztorun
(Cİ)
Ayse Parlak
(A)
Alessio Pini Prato
(AP)
Anna Poupalou
(A)
Marcos Prada Arias
(MP)
Jordi Prat
(J)
Carlos Pueyo Gil
(CP)
Luis Felipe Avila Ramirez
(LF)
Bertram Reingruber
(B)
Giovanna Riccipetitoni
(G)
Silke Riechardt
(S)
Toni Risteski
(T)
Wojciech Rogula
(W)
Udo Rolle
(U)
Carmelo Romeo
(C)
Frank-Mattias Schäfer
(FM)
Gabriella Scirè
(G)
Rony Sfeir
(R)
Georg Singer
(G)
Pim Sloots
(P)
Michael Stanton
(M)
Pernilla Stenström
(P)
Maria Stockinger
(M)
M Surhan
(M)
Janne Suominen
(J)
Julia Syed
(J)
Isabelle Talon
(I)
Halil Ibrahim Tanriverdi
(HI)
Osman Uzunlu
(O)
Laura Valfre
(L)
Marieke Witvliet
(M)
Elisa Zambaiti
(E)
Cinzia Zanatta
(C)
Augusto Zani
(A)
Informations de copyright
Copyright © 2023 The Author(s). Published by Elsevier Inc. All rights reserved.
Déclaration de conflit d'intérêts
Conflict of interest The authors declare that they have no competing interests.