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Transitional Care for Patients with Congenital Colorectal Diseases: An EUPSA Network Office, ERNICA, and eUROGEN Joint Venture.
de Beaufort, Cunera M C; Aminoff, Dalia; de Blaauw, Ivo; Crétolle, Célia; Dingemann, Jens; Durkin, Natalie; Feitz, Wout F J; Fruithof, JoAnne; Grano, Caterina; Burgos, Carmen Mesas; Schwarzer, Nicole; Slater, Graham; Soyer, Tutku; Violani, Cristiano; Wijnen, Rene; de Coppi, Paolo; Gorter, Ramon R.
Afiliación
  • de Beaufort CMC; Emma Children's Hospital Amsterdam UMC, Location University of Amsterdam, Department of Pediatric Surgery, Meibergdreef 9, Amsterdam, the Netherlands; Amsterdam UMC, University of Amsterdam, Gastroenterology and Hepatology, Amsterdam Gastroenterology Endocrinology Metabolism, Meibergdreef 9, Amsterd
  • Aminoff D; Italian Patient's Organization for ARM (AIMAR) - Patient Organization, Via Nomentana, Rome, Italy.
  • de Blaauw I; Department of Surgery - Division of Pediatric Surgery, Radboudumc Amalia Children's Hospital, Nijmegen, the Netherlands.
  • Crétolle C; Necker-Enfants Malades University Hospital, Paris, France.
  • Dingemann J; Department of Pediatric Surgery, Hannover Medical School, Hannover, Germany.
  • Durkin N; Stem Cell and Regenerative Medicine, DBC and BRC NIHR, Great Ormond Street Institute of Child Health, University College London, London, United Kingdom.
  • Feitz WFJ; Department of Urology, Division of Pediatric Urology, Radboudumc Amalia Children's Hospital, Nijmegen, the Netherlands.
  • Fruithof J; EAT - Esophageal Atresia Global Support Groups, Stuttgart, Germany; VOKS - Vereniging voor Ouderen en Kinderen met een Slokdarmafsluiting, Hellendoorn, the Netherlands.
  • Grano C; Department of Psychology, Faculty of Medicine and Psychology, University of Rome Sapienza, Rome, Lazio, Italy.
  • Burgos CM; Department of Pediatric Surgery, Karolinska University Hospital, Stockholm, Sweden.
  • Schwarzer N; SoMA, The German Patient Support Organization for Anorectal Malformations and Hirschsprung Disease, Munich, Germany.
  • Slater G; EAT - Esophageal Atresia Global Support Groups, Stuttgart, Germany; Lead ePAG (Patient Representative), ERN ERNICA.
  • Soyer T; Department of Pediatric Surgery, Hacettepe University, Ankara, Turkey.
  • Violani C; Sapienza University of Rome, Rome, Italy.
  • Wijnen R; Department of Pediatric Surgery, Erasmus MC Sophia Children's Hospital, Rotterdam, the Netherlands.
  • de Coppi P; Stem Cell and Regenerative Medicine, DBC and BRC NIHR, Great Ormond Street Institute of Child Health, University College London, London, United Kingdom.
  • Gorter RR; Emma Children's Hospital Amsterdam UMC, Location University of Amsterdam, Department of Pediatric Surgery, Meibergdreef 9, Amsterdam, the Netherlands.
J Pediatr Surg ; 58(12): 2319-2326, 2023 Dec.
Article en En | MEDLINE | ID: mdl-37438237
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.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Neoplasias Colorrectales / Cuidado de Transición / Malformaciones Anorrectales / Enfermedad de Hirschsprung Tipo de estudio: Guideline Límite: Adult / Child / Humans Idioma: En Revista: J Pediatr Surg Año: 2023 Tipo del documento: Article Pais de publicación: Estados Unidos
Texto completo
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Neoplasias Colorrectales / Cuidado de Transición / Malformaciones Anorrectales / Enfermedad de Hirschsprung Tipo de estudio: Guideline Límite: Adult / Child / Humans Idioma: En Revista: J Pediatr Surg Año: 2023 Tipo del documento: Article Pais de publicación: Estados Unidos