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.
引用
收藏
页数:8
相关论文
共 50 条
  • [31] An Exploratory Study of Cognitive Involvement in Hereditary Transthyretin Amyloidosis
    Durmus, Hacer
    Cakar, Arman
    Demirci, Hasan
    Parman, Fatma Yesim
    NEUROLOGY, 2022, 98 (18)
  • [32] A pilot study of nailfold capillaroscopy in hereditary transthyretin amyloidosis
    Kim, Dayoung
    Oh, Jeeyoung
    Min, Hong Ki
    Kim, Hae-Rim
    Choi, Kyomin
    SCIENTIFIC REPORTS, 2022, 12 (01)
  • [33] Vasculopathy in hereditary transthyretin amyloidosis: an electron microscopic study
    Koike, Haruki
    Nishi, Ryoji
    Ikeda, Shohei
    Kawagashira, Yuichi
    Iijima, Masahiro
    Misumi, Yohei
    Ando, Yukio
    Ikeda, Shu-ichi
    Katsuno, Masahisa
    Sobue, Gen
    BRAIN PATHOLOGY, 2019, 29 : 29 - 29
  • [34] An Exploratory Study of Cognitive Involvement in Hereditary Transthyretin Amyloidosis
    Durmus, Hacer
    Cakar, Arman
    Demirci, Hasan
    Alaylioglu, Merve
    Gezen-Ak, Duygu
    Dursun, Erdinc
    Gulsen Parman, Yesim
    ACTA NEUROLOGICA SCANDINAVICA, 2021, 144 (06): : 640 - 646
  • [35] Investigation into thiol conjugation of transthyretin in hereditary transthyretin amyloidosis
    Suhr, O
    Ando, Y
    Ohlsson, PI
    Olofsson, A
    Andersson, K
    Lundgren, E
    Ando, M
    Holmgren, G
    EUROPEAN JOURNAL OF CLINICAL INVESTIGATION, 1998, 28 (08) : 687 - 692
  • [36] THE IMPACT OF HEREDITARY TRANSTHYRETIN AMYLOIDOSIS (HATTR) ON WORK: THE PATIENTS' PERSPECTIVES
    Raymond, K.
    White, M. K.
    Guthrie, S. D.
    Pollock, M.
    VALUE IN HEALTH, 2018, 21 : S355 - S355
  • [37] Unreliable pupillary light reflex in hereditary transthyretin amyloidosis patients
    Marques, J.
    Malheiro, L.
    Oliveira, L.
    Meneres, M.
    Melo Beirao, J.
    EUROPEAN JOURNAL OF NEUROLOGY, 2021, 28 : 433 - 433
  • [38] Abnormal small bowel motility in patients with hereditary transthyretin amyloidosis
    Wixner, J.
    Tornblom, H.
    Karling, P.
    Anan, I.
    Lindberg, G.
    NEUROGASTROENTEROLOGY AND MOTILITY, 2018, 30 (09):
  • [39] BURDEN OF ILLNESS AMONG PATIENTS WITH HEREDITARY TRANSTHYRETIN (HATTR) AMYLOIDOSIS
    Reddy, S. R.
    Guthrie, S.
    Chang, E.
    Tieu, R. S.
    Tarbox, M.
    Pollock, M.
    VALUE IN HEALTH, 2019, 22 : S848 - S848
  • [40] Implantable Cardioverter Defibrillators in Patients With Hereditary Transthyretin Cardiac Amyloidosis
    Yalamanchili, Sreeram
    Brown, Matthew T.
    Blank, Evan A.
    Lyle, Melissa A.
    Bhatt, Kunal N.
    CIRCULATION, 2020, 142