TY - JOUR
T1 - Transitional Care for Patients with Congenital Colorectal Diseases
T2 - An EUPSA Network Office, ERNICA, and eUROGEN Joint Venture
AU - de Beaufort, Cunera M C
AU - Aminoff, Dalia
AU - de Blaauw, Ivo
AU - Crétolle, Célia
AU - Dingemann, Jens
AU - Durkin, Natalie
AU - Feitz, Wout F J
AU - Fruithof, JoAnne
AU - Grano, Caterina
AU - Burgos, Carmen Mesas
AU - Schwarzer, Nicole
AU - Slater, Graham
AU - Soyer, Tutku
AU - Violani, Cristiano
AU - Wijnen, Rene
AU - de Coppi, Paolo
AU - Gorter, Ramon R
AU - Transition of Care study group
A2 - Abbo, Olivier
A2 - Angotti, Rosella
A2 - Antunovic, Sanja Sindjic
A2 - Anzelewicz, Stefan
A2 - Arneitz, Christoph
A2 - Kakar, Mohit
N1 - Publisher Copyright:
© 2023 The Author(s)
PY - 2023/12
Y1 - 2023/12
N2 - 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: 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.
AB - 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: 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.
KW - Anorectal malformation
KW - Hirschsprung disease
KW - Transition of care
KW - Adult care
UR - http://www.scopus.com/inward/record.url?scp=85164615214&partnerID=8YFLogxK
U2 - 10.1016/j.jpedsurg.2023.06.008
DO - 10.1016/j.jpedsurg.2023.06.008
M3 - Article
C2 - 37438237
SN - 0022-3468
VL - 58
SP - 2319
EP - 2326
JO - Journal of Pediatric Surgery
JF - Journal of Pediatric Surgery
IS - 12
ER -