2026-08-30T14:23:38Zhttps://repisalud.isciii.es/rest/oai/requestoai:repisalud.isciii.es:20.500.12105/237292024-11-28T20:01:13Zcom_20.500.12105_15322com_20.500.12105_2051col_20.500.12105_16967
Repisalud
author
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
2024-10-09T06:35:22Z
2024-10-09T06:35:22Z
2023-11-10
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
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.
eng
Occupational practice in patients with hereditary transthyretin amyloidosis, a qualitative study
research article