2026-08-30T14:23:43Zhttps://repisalud.isciii.es/rest/oai/request

oai:repisalud.isciii.es:20.500.12105/237292024-11-28T20:01:13Zcom_20.500.12105_15322com_20.500.12105_2051col_20.500.12105_16967

00925njm 22002777a 4500 dc Gayà-Barroso, Aina author González-Moreno, Juan author Rodríguez, Adrián author Ripoll-Vera, Tomás author Losada-López, Inés author Gili, Margarita author Paneque, Milena author Pérez-Martínez, Sara author Cisneros-Barroso, Eugenia author 2023-11-10 Background: Hereditary transthyretin amyloidosis (ATTRv) is a rare genetic disease that negatively affects patients' quality of life through the involvement of various organs and tissues. Despite a large amount of research on medical and psychosocial interventions, the impact of occupational therapy (OT) on patients with ATTRv is not well understood. Objective: The aim of this study was to develop an OT programme to improve the daily functioning and quality of life of patients with ATTRv. Methods: Fourteen patients with ATTRv were interviewed. Together they developed short- and medium-term occupational goals. Patients received the OT intervention for six months. Outcomes were measured using scores for activities of daily living and psychological well-being. Results: The study found that OT can have a positive impact as a complementary intervention to medical and other psychosocial treatments. Of the 14 patients, 12 maintained the same scores in activities of daily living. Two deteriorated and eight improved their psychological scores. Conclusion: This study highlights the need for further research in this area and the importance of OT in the management of patients with ATTRv. Early intervention is of paramount importance and further research is needed to evaluate the long-term effects of OT interventions in patients with ATTRv. Gayà-Barroso A, González-Moreno J, Rodríguez A, Ripoll-Vera T, Losada-López I, Gili M, et al. Occupational practice in patients with hereditary transthyretin amyloidosis, a qualitative study. Orphanet J Rare Dis. 2023 Nov 10;18(1):352. 10.1186/s13023-023-02964-3 1750-1172 Orphanet journal of rare diseases https://hdl.handle.net/20.500.13003/19990 37950297 L2026563820 https://hdl.handle.net/20.500.12105/23729 Occupational practice in patients with hereditary transthyretin amyloidosis, a qualitative study