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

被引:0
作者
Gaya-Barroso, Aina [1 ,2 ]
Gonzalez-Moreno, Juan [1 ,2 ]
Rodriguez, Adrian [1 ,2 ]
Ripoll-Vera, Tomas [2 ,3 ]
Losada-Lopez, Ines [1 ,2 ]
Gili, Margarita [4 ,5 ]
Paneque, Milena [6 ,7 ,8 ]
Perez-Martinez, Sara [9 ]
Cisneros-Barroso, Eugenia [1 ,2 ]
机构
[1] Son Llatzer Univ Hosp, Internal Med Dept, Palma De Mallorca, Spain
[2] Son Llatzer Univ Hosp, Hlth Res Inst Balear Isl IdISBa, Palma De Mallorca, Spain
[3] Son Llatzer Univ Hosp, Cardiol Dept, Palma De Mallorca, Spain
[4] Univ Balear Isl, Dept Psychol, Palma De Mallorca, Spain
[5] Hlth Res Inst Balear Isl IdISBa, Palma De Mallorca, Spain
[6] Univ Porto, Inst Res & Innovat Hlth i3S, Porto, Portugal
[7] Inst Mol & Cell Biol CGPP IBMC, Ctr Predict & Prevent Genet, Porto, Portugal
[8] Univ Porto, Inst Biomed Sci Abel Salazar, Porto, Portugal
[9] Univ Complutense Madrid, Dept Expt Psychol Cognit Proc & Speech Therapy, Madrid, Spain
关键词
Activities of daily living (ADL); Hereditary transthyretin amyloidosis; Occupational therapy; Quality of life; Rare genetic disease; SPANISH VERSION; HEALTH SURVEY; POLYNEUROPATHY; THERAPY; SF-36;
D O I
10.1186/s13023-023-02964-3
中图分类号
Q3 [遗传学];
学科分类号
071007 ; 090102 ;
摘要
BackgroundHereditary 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.ObjectiveThe aim of this study was to develop an OT programme to improve the daily functioning and quality of life of patients with ATTRv.MethodsFourteen 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.ResultsThe 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.ConclusionThis 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.
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页数:8
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