Perceptions of individuals with Parkinson’s disease about quality of life

Detalhes bibliográficos
Autor(a) principal: Aline Aparecida Foppa
Data de Publicação: 2018
Outros Autores: Claudia Marcela Vargas Peláez, Fabíola Bagatini Buendgens, Clarice Chemello, Mariana Piva Fleury Charmillot, Marjorie Guida Pereira Marin, Mayara Seemann Hames, Mareni Rocha Farias
Tipo de documento: Artigo
Idioma: eng
Título da fonte: Repositório Institucional da UFMG
Texto Completo: https://doi.org/10.12804/revistas.urosario.edu.co/revsalud/a.6769
http://hdl.handle.net/1843/56513
https://orcid.org/0000-0002-1165-9017
https://orcid.org/0000-0001-5011-8718
https://orcid.org/0000-0002-1234-1561
https://orcid.org/0000-0001-9293-0392
https://orcid.org/0000-0003-3591-8017
https://orcid.org/0000-0002-4319-9318
Resumo: Introduction: Parkinson’s disease is a neurodegenerative disorder manifested by motor and non-motor symptoms that compromise patients’ quality of life. The instrument used to assess Parkinson’s disease patients’ quality of life is the Parkinson’s Disease Questionnaire (pdq-39). This study aims to identify issues related to quality of life from the patients’ perspective, compare the results obtained with the aspects included in the pdq-39, and describe some strategies that patients have adopted to overcome difficulties. Materials and methods: This is aqualitative and descriptive study based on a focus group consisting of six patients. Data were analyzed using the content analysis method. Results: Aspects related to all pdq-39 domains were mentioned by the patients, highlighting those related to limitations on their mobility and daily activities, as well as aspects related to their emotional wellbeing. The patients did not mention some aspects of mobility that are included in the pdq-39, but limitations in the domain of emotional wellbeing that are included in the pdq-39 were detected. In order to overcome difficulties, patients devise various strategies that require social support. Conclusion: Understanding and reflecting on Parkinson’s disease patients’ perceptions of their quality of life contributes to our understanding of the disease and stimulates proposals for adequate clinical interventions to provide comprehensive care. It is suggested that the pdq-39 be reviewed and adapted to the current context, taking into account the most recent knowledge and technological advances related to Parkinson’s disease.
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spelling 2023-07-17T20:36:40Z2023-07-17T20:36:40Z2018-05-24162262278https://doi.org/10.12804/revistas.urosario.edu.co/revsalud/a.67692145-4507http://hdl.handle.net/1843/56513https://orcid.org/0000-0002-1165-9017https://orcid.org/0000-0001-5011-8718https://orcid.org/0000-0002-1234-1561https://orcid.org/0000-0001-9293-0392https://orcid.org/0000-0003-3591-8017https://orcid.org/0000-0002-4319-9318Introduction: Parkinson’s disease is a neurodegenerative disorder manifested by motor and non-motor symptoms that compromise patients’ quality of life. The instrument used to assess Parkinson’s disease patients’ quality of life is the Parkinson’s Disease Questionnaire (pdq-39). This study aims to identify issues related to quality of life from the patients’ perspective, compare the results obtained with the aspects included in the pdq-39, and describe some strategies that patients have adopted to overcome difficulties. Materials and methods: This is aqualitative and descriptive study based on a focus group consisting of six patients. Data were analyzed using the content analysis method. Results: Aspects related to all pdq-39 domains were mentioned by the patients, highlighting those related to limitations on their mobility and daily activities, as well as aspects related to their emotional wellbeing. The patients did not mention some aspects of mobility that are included in the pdq-39, but limitations in the domain of emotional wellbeing that are included in the pdq-39 were detected. In order to overcome difficulties, patients devise various strategies that require social support. Conclusion: Understanding and reflecting on Parkinson’s disease patients’ perceptions of their quality of life contributes to our understanding of the disease and stimulates proposals for adequate clinical interventions to provide comprehensive care. It is suggested that the pdq-39 be reviewed and adapted to the current context, taking into account the most recent knowledge and technological advances related to Parkinson’s disease.Introdução: a doença de Parkinson é uma patologia neurodegenerativa, que se manifesta por signos e sintomas motores e não motores, que comprometem a qualidade de vida dos pacientes. O Parkinson Disease Questionnaire (pdq-39) é o instrumento mais utilizado para avaliar a qualidade de vida de em pacientes com esta doença. Os objetivos do trabalho foram identificar os aspetos relacionados com a Qualidade de Vida desde a perspectiva dos pacientes, compará-los com os aspetos considerados pelo pdq-39 e descrever as estratégias adotadas pelos pacientes para superar as dificuldades. Materiais e métodos: estudo qualitativo, descritivo. Realizou-se um grupo focal com seis pacientes. Os dados foram analisados usando o método de análise de conteúdo. Resultados: aspetos relacionados a todos os domínios do pdq-39 foram mencionados pelos pacientes, destacando-se aqueles relacionados com as limitações da mobilidade e o desenvolvimento de atividades diárias, e aspetos relacionados com o bem-estar emocional. No entanto, alguns aspectos considerados no domínio mobilidade do pdq-39 não foram mencionados, e foram detectadas limitações do domínio bem-estar emocional. Os pacientes desenham diversas estratégias para superar as dificuldades, nas que o suporte social é importante. Conclusão: conhecer e reflexionar sobre as percepções de pessoas com Doença de Parkinson sobre sua qualidade de vida contribui para a compreensão da doença e auxilia a proposta de intervenções clínicas adequadas para conseguir o cuidado integral. Sugere-se a revisão e adaptação do pdq-39 ao contexto atual, os avanços tecnológicos e de conhecimentos sobre a Doença de Parkinson.CNPq - Conselho Nacional de Desenvolvimento Científico e TecnológicoCAPES - Coordenação de Aperfeiçoamento de Pessoal de Nível SuperiorengUniversidade Federal de Minas GeraisUFMGBrasilFAR - DEPARTAMENTO DE FARMÁCIA SOCIALCiencias de la SaludDoença de ParkinsonQualidade de vidaInquéritos e questionáriosQuality of lifeParkinson diseasePDQ-39Perceptions of individuals with Parkinson’s disease about quality of lifePercepções de pacientes com doença de Parkinson sobre a qualidade de vidaPercepciones de pacientes con enfermedad de Parkinson sobre la calidad de vidainfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articlehttps://revistas.urosario.edu.co/index.php/revsalud/article/view/6769Aline Aparecida FoppaClaudia Marcela Vargas PeláezFabíola Bagatini BuendgensClarice ChemelloMariana Piva Fleury CharmillotMarjorie Guida Pereira MarinMayara Seemann HamesMareni Rocha Fariasapplication/pdfinfo:eu-repo/semantics/openAccessreponame:Repositório Institucional da UFMGinstname:Universidade Federal de Minas Gerais (UFMG)instacron:UFMGLICENSELicense.txtLicense.txttext/plain; charset=utf-82042https://repositorio.ufmg.br/bitstream/1843/56513/1/License.txtfa505098d172de0bc8864fc1287ffe22MD51ORIGINALPerceptions of individuals with Parkinson’s disease about quality of life.pdfPerceptions of individuals with Parkinson’s disease about quality of life.pdfapplication/pdf243112https://repositorio.ufmg.br/bitstream/1843/56513/2/Perceptions%20of%20individuals%20with%20Parkinson%e2%80%99s%20disease%20about%20quality%20of%20life.pdf9ed2c23d22b29335da4fac70ecd7077eMD521843/565132023-07-17 17:36:40.904oai:repositorio.ufmg.br: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Repositório de PublicaçõesPUBhttps://repositorio.ufmg.br/oaiopendoar:2023-07-17T20:36:40Repositório Institucional da UFMG - Universidade Federal de Minas Gerais (UFMG)false
dc.title.pt_BR.fl_str_mv Perceptions of individuals with Parkinson’s disease about quality of life
dc.title.alternative.pt_BR.fl_str_mv Percepções de pacientes com doença de Parkinson sobre a qualidade de vida
Percepciones de pacientes con enfermedad de Parkinson sobre la calidad de vida
title Perceptions of individuals with Parkinson’s disease about quality of life
spellingShingle Perceptions of individuals with Parkinson’s disease about quality of life
Aline Aparecida Foppa
Quality of life
Parkinson disease
PDQ-39
Doença de Parkinson
Qualidade de vida
Inquéritos e questionários
title_short Perceptions of individuals with Parkinson’s disease about quality of life
title_full Perceptions of individuals with Parkinson’s disease about quality of life
title_fullStr Perceptions of individuals with Parkinson’s disease about quality of life
title_full_unstemmed Perceptions of individuals with Parkinson’s disease about quality of life
title_sort Perceptions of individuals with Parkinson’s disease about quality of life
author Aline Aparecida Foppa
author_facet Aline Aparecida Foppa
Claudia Marcela Vargas Peláez
Fabíola Bagatini Buendgens
Clarice Chemello
Mariana Piva Fleury Charmillot
Marjorie Guida Pereira Marin
Mayara Seemann Hames
Mareni Rocha Farias
author_role author
author2 Claudia Marcela Vargas Peláez
Fabíola Bagatini Buendgens
Clarice Chemello
Mariana Piva Fleury Charmillot
Marjorie Guida Pereira Marin
Mayara Seemann Hames
Mareni Rocha Farias
author2_role author
author
author
author
author
author
author
dc.contributor.author.fl_str_mv Aline Aparecida Foppa
Claudia Marcela Vargas Peláez
Fabíola Bagatini Buendgens
Clarice Chemello
Mariana Piva Fleury Charmillot
Marjorie Guida Pereira Marin
Mayara Seemann Hames
Mareni Rocha Farias
dc.subject.por.fl_str_mv Quality of life
Parkinson disease
PDQ-39
topic Quality of life
Parkinson disease
PDQ-39
Doença de Parkinson
Qualidade de vida
Inquéritos e questionários
dc.subject.other.pt_BR.fl_str_mv Doença de Parkinson
Qualidade de vida
Inquéritos e questionários
description Introduction: Parkinson’s disease is a neurodegenerative disorder manifested by motor and non-motor symptoms that compromise patients’ quality of life. The instrument used to assess Parkinson’s disease patients’ quality of life is the Parkinson’s Disease Questionnaire (pdq-39). This study aims to identify issues related to quality of life from the patients’ perspective, compare the results obtained with the aspects included in the pdq-39, and describe some strategies that patients have adopted to overcome difficulties. Materials and methods: This is aqualitative and descriptive study based on a focus group consisting of six patients. Data were analyzed using the content analysis method. Results: Aspects related to all pdq-39 domains were mentioned by the patients, highlighting those related to limitations on their mobility and daily activities, as well as aspects related to their emotional wellbeing. The patients did not mention some aspects of mobility that are included in the pdq-39, but limitations in the domain of emotional wellbeing that are included in the pdq-39 were detected. In order to overcome difficulties, patients devise various strategies that require social support. Conclusion: Understanding and reflecting on Parkinson’s disease patients’ perceptions of their quality of life contributes to our understanding of the disease and stimulates proposals for adequate clinical interventions to provide comprehensive care. It is suggested that the pdq-39 be reviewed and adapted to the current context, taking into account the most recent knowledge and technological advances related to Parkinson’s disease.
publishDate 2018
dc.date.issued.fl_str_mv 2018-05-24
dc.date.accessioned.fl_str_mv 2023-07-17T20:36:40Z
dc.date.available.fl_str_mv 2023-07-17T20:36:40Z
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dc.identifier.uri.fl_str_mv http://hdl.handle.net/1843/56513
dc.identifier.doi.pt_BR.fl_str_mv https://doi.org/10.12804/revistas.urosario.edu.co/revsalud/a.6769
dc.identifier.issn.pt_BR.fl_str_mv 2145-4507
dc.identifier.orcid.pt_BR.fl_str_mv https://orcid.org/0000-0002-1165-9017
https://orcid.org/0000-0001-5011-8718
https://orcid.org/0000-0002-1234-1561
https://orcid.org/0000-0001-9293-0392
https://orcid.org/0000-0003-3591-8017
https://orcid.org/0000-0002-4319-9318
url https://doi.org/10.12804/revistas.urosario.edu.co/revsalud/a.6769
http://hdl.handle.net/1843/56513
https://orcid.org/0000-0002-1165-9017
https://orcid.org/0000-0001-5011-8718
https://orcid.org/0000-0002-1234-1561
https://orcid.org/0000-0001-9293-0392
https://orcid.org/0000-0003-3591-8017
https://orcid.org/0000-0002-4319-9318
identifier_str_mv 2145-4507
dc.language.iso.fl_str_mv eng
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dc.publisher.country.fl_str_mv Brasil
dc.publisher.department.fl_str_mv FAR - DEPARTAMENTO DE FARMÁCIA SOCIAL
publisher.none.fl_str_mv Universidade Federal de Minas Gerais
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