Defining priorities in the transition from paediatric to adult healthcare for rare bone disease patients. A dialogic approach

Eur J Med Genet. 2023 Nov 29:104891. doi: 10.1016/j.ejmg.2023.104891. Online ahead of print.ABSTRACTThe Italian patient association for Multiple Osteochondromas, Ollier Disease, and Maffucci Syndrome, Associazione Conto Alla Rovescia-ACAR Aps, conducted a mixed-methods study at its 2023 annual conference. The study included Open Dialogue Approach, and a feedback survey to identify the main priorities in the transitioning process from paediatric to adult healthcare for patients with Multiple Osteochondromas, Ollier Disease, and Maffucci Syndrome. The common needs identified by patients, families, caregivers, and healthcare professionals were coordination and continuity of care, patient empowerment and communication, social and practical support and transition planning and support. This experience fostered a sense of collaboration and cooperation among stakeholders, helping to build trust and create a shared vision for improving the quality of care for these patients. Furthermore, it could be considered as a starting point for other patient associations interested in using different approaches to identify the needs of their members and actively involve all stakeholders.PMID:38040052 | DOI:10.1016/j.ejmg.2023.104891
Source: European Journal of Medical Genetics - Category: Genetics & Stem Cells Authors: Source Type: research