Transition From Children's to Adults' Healthcare for Youth With (Genetic) Intellectual Disabilities: An ERN‐ITHACA Guideline
Year: 2025
Type: article
Abstract: BACKGROUND: For young people with rare genetic neurodevelopmental disorders associated with intellectual disabilities, the transfer from paediatric to adult healthcare providers is often complicated. The European Reference Network ERN-ITHACA (Intellectual disability, TeleHealth, Autism and Congenital Anomalies) on Rare Congenital Malformations and Rare Intellectual Disability aims to improve this transition through the development of a guideline. METHOD: Population-specific recommendations for the optimal transition to adult healthcare were developed by an interdisciplinary consortium, representing clinical, scientific and lived experience experts from nine European countries. Recommendations of the 2016 National Institute for Health and Care Excellence (NICE) guideline 'Transition From Children's to Adults' Services for Young People Using Health or Social Care Services' (NG43) were adapted, based on a literature review, expert opinion and lived experiences gathered through a survey, focus groups and discussions with self-advocates. A consensus meeting was held in Gdańsk, Poland, in October 2024. RESULTS: NICE guideline recommendations were adopted or adapted to the target population where necessary. New recommendations were formulated regarding the involvement of and assistance for young people and their families/caregivers, the coordination of interdisciplinary care, the role of centres of expertise, recommended interventions and psychosocial support. CONCLUSIONS: Planned, coordinated, specialised, individualised and interdisciplinary healthcare is required to support young people with (genetic) intellectual disabilities. Active collaboration between healthcare providers, researchers and individuals with lived experience is essential both to improve current healthcare and to build a stronger evidence base for successful transition interventions going forward.
DOI: 10.1111/jir.70049
Authors: Mirthe J. Klein Haneveld, Katarzyna Świeczkowska, Tomasz Grybek, Kinga Labunets, Thérèse A. M. J. van Amelsvoort, Maria F. Bedeschi, Claire Behan, Andreas Dufke, Juliette Dupont, Charlotte M. W. Gaasterland, Livia Garavelli, Sissel B. Helverschou, Susan McAnallen, Katarzyna A. Milska‐Musa, AnneLoes van Staa, Ioana Streață, Connie T. R. M. Stumpel, Federica Tamburrino, Mary Vasseghi, Klea Vyshka, Jolanta M. Wierzba, ERN‐ITHACA Guideline Working Group, Agnies M. van Eeghen
Institutions: Emma Kinderziekenhuis, Amsterdam Public Health, Hôpital Robert-Debré, Amsterdam University Medical Centers, ERN ITHACA, Amsterdam Reproduction Development, University of Amsterdam, University of Gdańsk, Gdańsk Medical University, Maastricht University, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, Trinity College Dublin, St. James's Hospital, Genetikum, Centro Académico de Medicina de Lisboa, Unidade Local de Saúde Santa Maria, Azienda Sanitaria Unità Locale di Reggio Emilia, Oslo University Hospital, Rotterdam University of Applied Sciences, University of Medicine and Pharmacy of Craiova, IRCCS Azienda Ospedliero-Universitaria di Bologna Policlinico di Sant'Orsola, University of Bologna, 's Heeren Loo
Language: English
Subfield: Speech and Hearing
Field: Health Professions
Domain: Health Sciences
Open Access status: hybrid
Estimated APC paid: $3,920
Funder: European Commission
Award: G2872175397
OpenAlex ID: W4415389334