Transition services in 22q11 deletion syndrome: Hit or miss
This study highlights the inadequacy of transitional care for individuals with 22q11DS and their families, showing a need to better align policies and clinical practice. Filling the gap between existing policies and the desired transitional care services is essential. The latter includes: an appropriate longitudinal transition plan, strong psychological support not only for the individual with 22q11DS but also for their family, a coordination system, and accessible adult services with expertise on 22q11DS.
Authors
- Luzius A. Steiner (ORCID: https://orcid.org/0000-0002-1437-3532)
- Bernice S. Elger (ORCID: https://orcid.org/0000-0002-4249-7399)
- Cheryl Cytrynbaum (ORCID: https://orcid.org/0000-0002-3742-1250)
- Sandra Meier (ORCID: https://orcid.org/0000-0002-3287-5894)
- Eva De Clercq (ORCID: https://orcid.org/0000-0002-7835-9553)
- Ann Swillen (ORCID: https://orcid.org/0000-0003-4258-4537)
- Sophie Ayoub
- Holly Carbyn
Institutions
- University of Geneva (CH)
- Dalhousie University (CA)
- University of Basel (CH)
- University of Toronto (CA)
- Izaak Walton Killam Health Centre (CA)
- Hospital for Sick Children (CA)
- University Hospital of Basel (CH)
- Center for Human Genetics (US)
- University Centre of Legal Medicine (CH)
- KU Leuven (BE)
Publication Details
- Journal
- Health Care Transitions
- Published
- 2025-01-01
- DOI
- https://doi.org/10.1016/j.hctj.2025.100120
- Primary Topic
- Congenital Heart Disease Studies
- Type
- article
- Field-Weighted Citation Impact
- 0.00