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

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 inter...

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Autores principales: Gayà-Barroso, Aina, González-Moreno, Juan, Rodríguez, Adrián, Ripoll-Vera, Tomás, Losada-López, Inés, Gili, Margarita, Paneque, Milena, Cisneros-Barroso, Eugenia
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9516971/
https://www.ncbi.nlm.nih.gov/pubmed/36141995
http://dx.doi.org/10.3390/ijerph191811721
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author Gayà-Barroso, Aina
González-Moreno, Juan
Rodríguez, Adrián
Ripoll-Vera, Tomás
Losada-López, Inés
Gili, Margarita
Paneque, Milena
Cisneros-Barroso, Eugenia
author_facet Gayà-Barroso, Aina
González-Moreno, Juan
Rodríguez, Adrián
Ripoll-Vera, Tomás
Losada-López, Inés
Gili, Margarita
Paneque, Milena
Cisneros-Barroso, Eugenia
author_sort Gayà-Barroso, Aina
collection PubMed
description 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.
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spelling pubmed-95169712022-09-29 Establishing Occupational Therapy Needs: A Semi-Structured Interview with Hereditary Transthyretin Amyloidosis Patients Gayà-Barroso, Aina González-Moreno, Juan Rodríguez, Adrián Ripoll-Vera, Tomás Losada-López, Inés Gili, Margarita Paneque, Milena Cisneros-Barroso, Eugenia Int J Environ Res Public Health Article 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. MDPI 2022-09-17 /pmc/articles/PMC9516971/ /pubmed/36141995 http://dx.doi.org/10.3390/ijerph191811721 Text en © 2022 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Gayà-Barroso, Aina
González-Moreno, Juan
Rodríguez, Adrián
Ripoll-Vera, Tomás
Losada-López, Inés
Gili, Margarita
Paneque, Milena
Cisneros-Barroso, Eugenia
Establishing Occupational Therapy Needs: A Semi-Structured Interview with Hereditary Transthyretin Amyloidosis Patients
title Establishing Occupational Therapy Needs: A Semi-Structured Interview with Hereditary Transthyretin Amyloidosis Patients
title_full Establishing Occupational Therapy Needs: A Semi-Structured Interview with Hereditary Transthyretin Amyloidosis Patients
title_fullStr Establishing Occupational Therapy Needs: A Semi-Structured Interview with Hereditary Transthyretin Amyloidosis Patients
title_full_unstemmed Establishing Occupational Therapy Needs: A Semi-Structured Interview with Hereditary Transthyretin Amyloidosis Patients
title_short Establishing Occupational Therapy Needs: A Semi-Structured Interview with Hereditary Transthyretin Amyloidosis Patients
title_sort establishing occupational therapy needs: a semi-structured interview with hereditary transthyretin amyloidosis patients
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9516971/
https://www.ncbi.nlm.nih.gov/pubmed/36141995
http://dx.doi.org/10.3390/ijerph191811721
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