Transitional Care for Patients with Congenital Colorectal Diseases: An EUPSA Network Office, ERNICA, and eUROGEN Joint Venture
Cunera M. C. de Beaufort, Dalia Aminoff, Ivo de Blaauw, Célia Cretolle, Jens Dingemann, Natalie Durkin, Wout Feitz, JoAnne Fruithof, Caterina Grano, Carmen Mesas Burgos, Nicole Schwarzer, Graham Slater, Tutku Soyer, Cristiano Violani, René Wijnen, Paolo De Coppi, Ramon R. Gorter, Olivier Abbo, Rossella Angotti, Sanja Sindjic Antunovic, Stefan Anzelewicz, Christoph Arneitz, Marion Arnold, Zaki Assi, Emrah Aydın, Quentin Ballouhey, Patricia Barila, Sonia Basson, Manuel Besendörfer, Antonio Di Cesare, Anne Dariel, Inga Dekerytė, Ivona Djordjević, Vincenzo Domenichelli, Lise Duranteau, Çiğdem Ulukaya Durakbaşa, Anne‐Karoline Ebert, Verena Ellerkamp, Francesco Fascetti Leon, Margit Fisch, Araceli García Vázquez, Christoph Gielok, Gulnur Gollu Bahadir, Frank-Martin Haecker, Gundela Holmdahl, Sabine Irtan, Ceri Jones, M. Hassan Kakar, Ali Keshtgar, Kolja Kvist, F. Laconi, Marie Laurance, Eduardo López Candel, Johanna Ludwiczek, Barbara Ludwikowski, Francesco Macchini, Mark Malota, Lucas Matthyssens, Benjamin Martin, L Martínez, Paola Midrio, Marc Miserez, Giovanni Mosiello, Francisco Murcia Pascual, Bernardo Nunez, Roger Olén, Can İhsan Öztorun, Ayşe Parlak, Alessio Pini Prato, Anna Poupalou, Marcos Prada Arias, J. Prat, Carlos Gil, Luis Felipe Avila Ramirez, Bertram Reingruber, Giovanna Riccipetitoni, Silke Riechardt, Toni Risteski, W Rogula, Udo Rolle, Carmelo Romeo, Frank‐Mattias Schäfer, G. Scirè, Rony Sfeir, Georg Singer, Pim Sloots, Michael Stanton, Pernilla Stenström, Maria Stockinger, M. Surhan, Janne Suominen, Julia Syed, Isabelle Talon, Halil Tanrıverdi, Osman Uzunlu, Laura Valfrè, Marieke J. Witvliet, Elisa Zambaiti, Cinzia Zanatta, Augusto Zani
Abstract
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.