Challenges in the transition of care for rare connective tissue diseases: results from the 2023 ERN ReCONNET Transition of Care Task Force survey
The survey highlighted diverse transition practices and resources across centres, with challenges in readiness evaluation and the use of guidelines. Despite these obstacles, respondents rated ongoing transition processes positively. Enhancing patient perspectives in the transition process is crucial to meet their needs during this critical phase.
Authors
- Marta Mosca (ORCID: https://orcid.org/0000-0001-5937-4574)
- Gabriele Simonini (ORCID: https://orcid.org/0000-0002-5919-4861)
- Linda Schraven
- Paola Triggianese (ORCID: https://orcid.org/0000-0002-1954-2825)
- Mojca Zajc Avramovič (ORCID: https://orcid.org/0000-0003-1680-628X)
- Rosaria Talarico (ORCID: https://orcid.org/0000-0003-4268-9611)
- Tadej Avčin (ORCID: https://orcid.org/0000-0001-8409-9092)
- João Eurico Fonseca (ORCID: https://orcid.org/0000-0003-1432-3671)
- Diana Marinello (ORCID: https://orcid.org/0000-0002-5537-6043)
- Chiara Baldini (ORCID: https://orcid.org/0000-0002-4454-1824)
- Edoardo Marrani (ORCID: https://orcid.org/0000-0002-0346-3268)
- Arjan Vissink (ORCID: https://orcid.org/0000-0003-2581-4361)
- Filipa Oliveira‐Ramos (ORCID: https://orcid.org/0000-0001-7132-8909)
- Eva Collado-González
Institutions
- University of Rome Tor Vergata (IT)
- University Medical Center Groningen (NL)
- University of Lisbon (PT)
- University of Groningen (NL)
- Ljubljana University Medical Centre (SI)
- Hospital Universitário de Santa Maria (BR)
- Meyer Children's Hospital (IL)
- Meyer Children's Hospital (IT)
- Scleroderma Foundation (US)
- Hospital de Santa Maria (PT)
- Istituti di Ricovero e Cura a Carattere Scientifico (IT)
- Ehlers-Danlos Society (US)
- Azienda Ospedaliera Universitaria Pisana (IT)
Publication Details
- Journal
- Rheumatology Advances in Practice
- Published
- 2024-12-18
- DOI
- https://doi.org/10.1093/rap/rkae149
- Citations
- 2
- Primary Topic
- Adolescent and Pediatric Healthcare
- Type
- article
- Field-Weighted Citation Impact
- 1.75
Funders
- European Commission