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DOI 10.1186/s13023-023-02964-3

Медицинская библиотека · Orphanet journal of rare diseases · 2023

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

Gayà-Barroso Aina, González-Moreno Juan, Rodríguez Adrián, Ripoll-Vera Tomás, Losada-López Inés, Gili Margarita, Paneque Milena, Pérez-Martínez Sara, Cisneros-Barroso Eugenia

СтатьяПоддержка исследования: вне правительства СШАПеревод в очереди

Аннотация

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.

Для цитирования: Gayà-Barroso Aina, González-Moreno Juan, Rodríguez Adrián, Ripoll-Vera Tomás, Losada-López Inés, Gili Margarita, Paneque Milena, Pérez-Martínez Sara, Cisneros-Barroso Eugenia. Occupational practice in patients with hereditary transthyretin amyloidosis, a qualitative study.. Orphanet journal of rare diseases. 2023. DOI: 10.1186/s13023-023-02964-3.

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