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.
Original language | English |
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Pages (from-to) | 2319-2326 |
Number of pages | 8 |
Journal | Journal of Pediatric Surgery |
Volume | 58 |
Issue number | 12 |
Early online date | 14 Jun 2023 |
DOIs | |
Publication status | Published - Dec 2023 |
Bibliographical note
Funding Information:The authors acknowledge the support of the EUPSA Network Office for providing guidance on survey design and facilitating distribution of the survey to the members of EUPSA. This work is supported non-financially by the ERN for Rare Urogenital Diseases and Complex Conditions (ERN eUROGEN). This research is generated within the European Reference Network on rare Inherited and Congenital Anomalies (ERNICA) – no financial support was provided. Requests for data sharing will be considered by the study steering group upon written request to the corresponding author. Collaborators. Transition of Care study group. Olivier Abbo (Hôpital des Enfants de Toulouse, Toulouse, France). Rossella Angotti (University of Siena, Siena, Italy). Sanja Sindjic Antunovic (University Children's Hospital, Belgrade, Serbia). Stefan Anzelewicz (Copernicus Hospital Ltd, Gdansk, Poland). Christoph Arneitz (Klagenfurt Hospital, Klagenfurt, Austria). Marion Arnold (Red Cross War Memorial Children's Hospital, Cape Town, South Africa). Zaki Assi (Soroka University Medical Center, Beer Sheva, Israel). Emrah Aydin (Namik Kemal University School of Medicine, Istanbul, Turkey). Quentin Ballouhey (Limoges University Hospital, Limoges, France). Patricia Barila (Bicetre Hospital, Paris, France). Sonia Basson (Royal Manchester Children's Hospital, Manchester, United Kingdom). Manuel Besendorfer (Universitätsklinikum Erlangen, Erlangen, Germany). Antonio Di Cesare (Ospedale Maggiore Policlinico, Milan, Italy). Anne Dariel (Hôpital Timone Enfants, Marseille, France). Inga Dekeryte (Lithuanian University of Health Sciences Kaunas Clinics, Kaunas, Lithuania). Ivona Djordjevic (Clinic for Pediatric Surgery and Orthopedics,University Clinical Centre, Niš, Serbia). Vincenzo Domenichelli (U.O. Chirurgia Pediatrica AUSL della Romagna, Rimini, Italy). Lise Duranteau (AP-HP.Université Paris Saclay, Paris, France). Cigdem Durakbasa (TC Istanbul Medeniyet University, Istanbul, Turkey). Anne-Karoline Ebert (Universitatsklinikum Ulm, Ulm, Germany). Verena Ellerkamp (Universitätsklinikum Tübingen, Tübingen, Germany). Francesco Fascetti Leon (Padua center, Padua, Italy). Margit Fisch (University Medical Center Hamburg-Eppendorf, Hamburg, Germany). Araceli García Vazquez (Hospital Universitario 12 de Octobre, Madrid, Spain). Christoph Gielok (Universitatsklinikum Augsburg, Augsburg, Germany). Gulnur Gollu Bahadir (Ankara University, Ankara, Turkey). Frank-Martin Haecker (Children's hospital of Eastern Switzerland, St. Gallen, Switserland). Gundela Holmdahl (Karolinska University Hospital, Stockholm, Sweden). Sabine Irtan (Trousseau hospital, Paris, France). Ceri Jones (University Hospital of Wales, Cardiff, United Kingdom). Mohit Kakar (University Clinical Children's Hospital, Riga, Latvia). Ali Keshtgar (Evelina London Children's Hospital, London, United Kingdom). Kolja Kvist (Rigshospitalet, Copenhagen, Denmark). Francesco Laconi (CHU du Reims, Reims, France). Marie Laurance (CHU du Reims, Reims, France). Eduardo Lopez Candel (Servicio de Cirugía Pediátrica, Hospital Torrecárdenas, Almería, Spain). Johanna Ludwiczek (Kepler Universitätsklinikum GmbH, Linz, Austria). Barbara Ludwikowski (Stiftung Hannoversche Kinderheilanstalt, Hannover, Germany). Francesco Macchini (ASST Grande Ospedale Metropolitano (GOM), Milan, Italy). Mark Malota (Munchen Klinik Schwabing, Munchen, Germany). Lucas Matthyssens (Ghent University Hospital, Gent, Belgium). Benjamin Martin (Bristol Children's Hospital, Bristol, United Kingdom). Leopoldo Martinez (Childrens Hospital La Paz, Madrid, Spain). Paola Midrio (Ospedale Ca’ Foncello, Treviso, Italy). Marc Miserez (UZ Leuven, Leuven, Belgium). Giovanni Mosiello (Ospedale Pediatrico Bambino Gesù, Roma, Italy). Francisco Murcia Pascual (Reina Sofia Hospital, Cordoba, Spain). Bernardo Nunez (University Hospital Parc Tauli Sabadell, Barcelona, Spain). Roger Olén (The Queen Silvia Children's Hospital SU, Gothenburg, Sweden). Can İhsan Öztorun (Ankara City Hospital, Ankara, Turkey). Ayse Parlak (Uludag University, Bursa, Turkey). Alessio Pini Prato (Children Hospital AO SS Antonio e Biagio e Cesare Arrigo, Alessandria, Italy). Anna Poupalou (HUDERF hospital, Brussels, Belgium). Marcos Prada Arias (Álvaro Cunqueiro University Hospital, Vigo, Spain). Jordi Prat (Sant Joan de Déu Barcelona Children's Hospital, Barcelona, Spain). Carlos Pueyo Gil (Hospital Joan XXIII de Tarragona, Tarragona, Spain). Luis Felipe Avila Ramirez (Hospital Clinico San Carlos, Madrid, Spain). Bertram Reingruber (Florence-Nightingale-Krankenhaus, Dusseldorf, Germany). Giovanna Riccipetitoni (Fondazione IRCCS Policlinico San Matteo, Pavia, Italy). Silke Riechardt (University Medical Center Hamburg-Eppendorf, Hamburg, Germany). Toni Risteski (University Clinic for pediatric surgery, Skopje, Macedonia). Wojciech Rogula (University Children's Hospital of Cracow, Krakow, Poland). Udo Rolle (University Hospital Frankfurt, Frankfurt, Germany). Carmelo Romeo (University of Messina Department of Women and Infants Policlinico Martino, Messina, Italy). Frank-Mattias Schäfer (Cnopfsche Kinderklinik, Nurnberg, Germany). Gabriella Scirè (Ospedale della Donna e del Bambino, Verona, Italy). Rony Sfeir (CHRU Lille, Lille, France). Georg Singer (Medical University of Graz, Graz, Austria). Pim Sloots (Sophia kinderziekenhuis Erasmus MC, Rotterdam, the Netherlands). Michael Stanton (University Hospital Southampton, Southampton, United Kingdom). Pernilla Stenström (Skane University Hospital Lund, Lund, Sweden). Maria Stockinger (Kepler Universitätsklinikum GmbH, Linz, Austria). M Surhan (Eskisehir Osmangazi University, Eskisehir, Turkey). Janne Suominen (Helsinki University Hospital, Helsinki, Finland). Julia Syed (Universitätsklinikum Erlangen, Erlangen, Germany). Isabelle Talon (University Hospital of Strasbourg, Strasbourg, France). Halil Ibrahim Tanriverdi (Manisa Celal Bayar University Medical School, Manisa, Turkey). Osman Uzunlu (Pamukkale Univeristy, Denizli, Turkey). Laura Valfre (Ospedale Pediatrico Bambino Gesù, Roma, Italy). Marieke Witvliet (Wilhelmina Kinderziekenhuis UMCU, Utrecht, the Netherlands). Elisa Zambaiti (Ospedale Infantile Regina Margherita, Turin, Italy). Cinzia Zanatta (Ospedale Ca’ Foncello, Treviso, Italy). Augusto Zani (The Hospital for Sick Children (SickKids)), Toronto, Canada).
Publisher Copyright:
© 2023 The Author(s)