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Establishing Occupational Therapy Needs: A Semi-Structured Interview with Hereditary Transthyretin Amyloidosis Patients

Author

Listed:
  • Aina Gayà-Barroso

    (Internal Medicine Department, Son Llàtzer University Hospital, 07198 Palma de Mallorca, Spain
    Health Research Institute of the Balearic Islands (IdISBa), Son Llàtzer University Hospital, 07198 Palma de Mallorca, Spain)

  • Juan González-Moreno

    (Internal Medicine Department, Son Llàtzer University Hospital, 07198 Palma de Mallorca, Spain
    Health Research Institute of the Balearic Islands (IdISBa), Son Llàtzer University Hospital, 07198 Palma de Mallorca, Spain)

  • Adrián Rodríguez

    (Internal Medicine Department, Son Llàtzer University Hospital, 07198 Palma de Mallorca, Spain
    Health Research Institute of the Balearic Islands (IdISBa), Son Llàtzer University Hospital, 07198 Palma de Mallorca, Spain)

  • Tomás Ripoll-Vera

    (Health Research Institute of the Balearic Islands (IdISBa), Son Llàtzer University Hospital, 07198 Palma de Mallorca, Spain
    Cardiology Department, Son Llàtzer University Hospital, 07198 Palma de Mallorca, Spain)

  • Inés Losada-López

    (Internal Medicine Department, Son Llàtzer University Hospital, 07198 Palma de Mallorca, Spain
    Health Research Institute of the Balearic Islands (IdISBa), Son Llàtzer University Hospital, 07198 Palma de Mallorca, Spain)

  • Margarita Gili

    (Department of Psychology, University of Balearic Islands, Health Research Institute of the Balearic Islands (IdISBa), 07120 Palma de Mallorca, Spain)

  • Milena Paneque

    (Institute for Research and Innovation in Health (i3S), University of Porto, 4099-002 Porto, Portugal
    Center for Predictive and Preventive Genetics, Institute for Molecular and Cell Biology (CGPP-IBMC), 4200-135 Porto, Portugal
    Institute of Biomedical Sciences Abel Salazar, University of Porto, 4099-002 Porto, Portugal)

  • Eugenia Cisneros-Barroso

    (Internal Medicine Department, Son Llàtzer University Hospital, 07198 Palma de Mallorca, Spain
    Health Research Institute of the Balearic Islands (IdISBa), Son Llàtzer University Hospital, 07198 Palma de Mallorca, Spain)

Abstract

The purpose of this study was to explore the occupational performance and needs of patients with hereditary transthyretin amyloidosis (ATTRv). A semi-structured interview was conducted by an occupational therapist with 44 patients with Val50Met-ATTRv recruited through patient associations. The interview addressed three related dimensions. The first one, the physical dimension, was evaluated using the Spanish versions of the Barthel Index, the Lawton and Brody scale, and the Norfolk questionnaire; the second one, the psychological dimension, was assessed with the Warwick–Edinburgh Mental Well-Being Scale and the SF-36 questionnaire; and the third dimension, the occupational performance, was assessed through unstructured questions on daily occupations, work, roles, and hobbies given the lack of standardized scales. Twenty participants (45.4%) responded that the disease had affected their basic activities of daily living, twenty- four (54.5%) perceived an impact on their instrumental activities of daily living, and all the participants reported that the disease symptoms had affected their ability to perform advanced activities as well as their employment status. Only three patients (6.8%) reported a lack of psychological impairment following disease diagnosis. These findings suggest that a semi-structured interview conducted by an occupational therapist can provide essential information that should be considered for the implementation of occupational therapy programs targeting patients living with a diagnosis of ATTRv.

Suggested Citation

  • Aina Gayà-Barroso & Juan González-Moreno & Adrián Rodríguez & Tomás Ripoll-Vera & Inés Losada-López & Margarita Gili & Milena Paneque & Eugenia Cisneros-Barroso, 2022. "Establishing Occupational Therapy Needs: A Semi-Structured Interview with Hereditary Transthyretin Amyloidosis Patients," IJERPH, MDPI, vol. 19(18), pages 1-10, September.
  • Handle: RePEc:gam:jijerp:v:19:y:2022:i:18:p:11721-:d:917328
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    1. Aina Gayà-Barroso & Juan González-Moreno & Adrián Rodríguez & Tomás Ripoll-Vera & Inés Losada-López & Margarita Gili & Eugenia Cisneros-Barroso, 2022. "Accessibility to Occupational Therapy Services for Hereditary Transthyretin Amyloidosis," IJERPH, MDPI, vol. 19(8), pages 1-8, April.
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