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Occupational practice in patients with hereditary transthyretin amyloidosis, a qualitative study

Authors :
Aina Gayà-Barroso
Juan González-Moreno
Adrián Rodríguez
Tomás Ripoll-Vera
Inés Losada-López
Margarita Gili
Milena Paneque
Sara Pérez-Martínez
Eugenia Cisneros-Barroso
Source :
Orphanet Journal of Rare Diseases, Vol 18, Iss 1, Pp 1-8 (2023)
Publication Year :
2023
Publisher :
BMC, 2023.

Abstract

Abstract 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.

Details

Language :
English
ISSN :
17501172
Volume :
18
Issue :
1
Database :
Directory of Open Access Journals
Journal :
Orphanet Journal of Rare Diseases
Publication Type :
Academic Journal
Accession number :
edsdoj.7ecaeaeaa59e4f45be8fb91e15e07268
Document Type :
article
Full Text :
https://doi.org/10.1186/s13023-023-02964-3