‘Mind the Gap’—A Survey on Care Gaps and Priorities for the Transition to Adult Healthcare According to Caregivers of Young People With Rare Conditions Associated With Intellectual Disability
Coordinated, specialised, individualised and multidisciplinary care is required to support youth with rare conditions and intellectual disability in the transitional age. Supporting young people's independence, orchestrating multidisciplinary care and ensuring effective communication are particularly challenging in the transition to adult healthcare for this population.
Authors
- Klea Vyshka
- Charlotte M. W. Gaasterland (ORCID: https://orcid.org/0000-0003-3501-8211)
- AnneLoes van Staa (ORCID: https://orcid.org/0000-0003-4496-3207)
- Mirthe J Klein Haneveld (ORCID: https://orcid.org/0000-0002-0453-2608)
- Tomasz Grybek (ORCID: https://orcid.org/0000-0001-7994-8280)
- Agnies M. van Eeghen (ORCID: https://orcid.org/0000-0001-8149-8645)
- Katarzyna Świeczkowska
Institutions
- University of Gdańsk (PL)
- Emma Kinderziekenhuis (NL)
- Institute of Criminology of the Polish Forensic Association (PL)
- Amsterdam University Medical Centers (NL)
- Intel (Poland) (PL)
- 's Heeren Loo (NL)
- University of Amsterdam (NL)
- Rotterdam University of Applied Sciences (NL)
Publication Details
- Journal
- Journal of Intellectual Disability Research
- Published
- 2025-03-14
- DOI
- https://doi.org/10.1111/jir.13229
- Citations
- 8
- Primary Topic
- Adolescent and Pediatric Healthcare
- Type
- article
- Field-Weighted Citation Impact
- 24.94
Funders
- European Commission
- Berrikuntza + Ikerketa + Osasuna Eusko Fundazioa