Fatores associados à adesão ao tratamento dos pacientes com fenilcetonúria atendidos no Hospital Infantil Joana de Gusmão

Detalhes bibliográficos
Autor(a) principal: Mariosa, Nayara Ferreira
Data de Publicação: 2017
Tipo de documento: Trabalho de conclusão de curso
Idioma: por
Título da fonte: Repositório Universitário da Ânima (RUNA)
Texto Completo: https://repositorio.animaeducacao.com.br/handle/ANIMA/9446
Resumo: Introduction: Phenylketonuria (PKU) is a disease of autosomal genetic inheritance which promotes a change in the metabolism of amino acids with increased phenylalanine (phe) in the blood and impairment in cellular communication. Adherence to treatment linked to the maintenance of a restricted diet in phenylalanine and control of metabolic levels, is a great challenge with high impact on family quality of life. Objectives: To analyze the factors associated with adherence to the treatment of patients with Phenylketonuria treated at the Hospital Joana de Gusmão - Florianópolis - SC, in the period between August 2015 and November 2016. Method: Cross-sectional observational study with case-control type analysis. Data from patients between 0 and 41 years of age were collected and analyzed from 50 charts, and interviews were conducted with those who were responsible for the patients. Approved in CEP Unisul. Results: The prevalence of adherence to treatment was 52.2% in patients younger than 13 years of age, 92.3% of patients adhering to treatment started treatment in childhood, 41.7% of those responsible for the patients, adhering to treatment, have more than 8 years of schooling and 75% reported on government failure to provide the formula. Conclusion: The treatment adherence depends on demographic factors like the age of the patients, as well the early beginning of treatment, well known about phenylketonuria and the adequate supply of the metabolic formula, that can contribute for the maintenance of phenylalanine levels.
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spelling Fatores associados à adesão ao tratamento dos pacientes com fenilcetonúria atendidos no Hospital Infantil Joana de GusmãoFenilcetonúriaFenilalaninaAdesãoTratamentoIntroduction: Phenylketonuria (PKU) is a disease of autosomal genetic inheritance which promotes a change in the metabolism of amino acids with increased phenylalanine (phe) in the blood and impairment in cellular communication. Adherence to treatment linked to the maintenance of a restricted diet in phenylalanine and control of metabolic levels, is a great challenge with high impact on family quality of life. Objectives: To analyze the factors associated with adherence to the treatment of patients with Phenylketonuria treated at the Hospital Joana de Gusmão - Florianópolis - SC, in the period between August 2015 and November 2016. Method: Cross-sectional observational study with case-control type analysis. Data from patients between 0 and 41 years of age were collected and analyzed from 50 charts, and interviews were conducted with those who were responsible for the patients. Approved in CEP Unisul. Results: The prevalence of adherence to treatment was 52.2% in patients younger than 13 years of age, 92.3% of patients adhering to treatment started treatment in childhood, 41.7% of those responsible for the patients, adhering to treatment, have more than 8 years of schooling and 75% reported on government failure to provide the formula. Conclusion: The treatment adherence depends on demographic factors like the age of the patients, as well the early beginning of treatment, well known about phenylketonuria and the adequate supply of the metabolic formula, that can contribute for the maintenance of phenylalanine levels.Introdução: A Fenilcetonúria é uma doença de herança genética autossômica recessiva que promove uma alteração no metabolismo de aminoácidos com aumento de fenilalanina (Fal) no sangue e prejuízo na comunicação celular. Adesão ao tratamento, vinculada à manutenção de uma dieta restrita em fenilalanina e controle dos seus níveis metabólicos, é um grande desafio com alto impacto na qualidade de vida familiar. Objetivos: Analisar os fatores associados à adesão ao tratamento dos pacientes com Fenilcetonúria atendidos no Hospital Joana de Gusmão-Florianópolis - SC, no período entre agosto de 2015 e novembro de 2016. Métodos: Estudo observacional transversal com análise tipo caso-controle. Dados de pacientes entre 0 e 41 anos foram coletados e analisados, a partir de 50 prontuários, e aplicadas entrevistas com os responsáceis pelos pacientes. Aprovado pelo CEP Unisul. Resultados: A prevalência de adesão ao tratamento foi de 52,2% em pacientes menores de 13 anos, 92,3% dos pacientes com adesão ao tratamento iniciaram tratamento na infância, 41,7% dos responsáveis legais pelos pacientes, com adesão ao tratamento, possuem acima de 8 anos de escolaridade e 75% relataram sobre as falhas no fornecimento da fórmula pelo governo. Conclusão: A adesão ao tratamento depende de fatores demográficos como a idade dos pacientes, bem como, início precoce do tratamento, bom conhecimento sobre a Fenilcetonúria e o fornecimento adequado da fórmula metabólica, que podem contribuir para a manutenção dos níveis da fenilalanina.Pereira, ElayneMariosa, Nayara Ferreira2017-07-12T23:41:51Z2020-11-29T02:28:51Z2017-07-12T23:41:51Z2020-11-29T02:28:51Z2017info:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/bachelorThesis53 f.application/pdfhttps://repositorio.animaeducacao.com.br/handle/ANIMA/9446Medicina - Pedra BrancaPalhoçaAttribution-NonCommercial-NoDerivs 3.0 Brazilhttp://creativecommons.org/licenses/by-nc-nd/3.0/br/info:eu-repo/semantics/openAccessporreponame:Repositório Universitário da Ânima (RUNA)instname:Ânima Educaçãoinstacron:Ânima2020-12-02T04:19:27Zoai:repositorio.animaeducacao.com.br:ANIMA/9446Repositório InstitucionalPRIhttps://repositorio.animaeducacao.com.br/oai/requestcontato@animaeducacao.com.bropendoar:2020-12-02T04:19:27Repositório Universitário da Ânima (RUNA) - Ânima Educaçãofalse
dc.title.none.fl_str_mv Fatores associados à adesão ao tratamento dos pacientes com fenilcetonúria atendidos no Hospital Infantil Joana de Gusmão
title Fatores associados à adesão ao tratamento dos pacientes com fenilcetonúria atendidos no Hospital Infantil Joana de Gusmão
spellingShingle Fatores associados à adesão ao tratamento dos pacientes com fenilcetonúria atendidos no Hospital Infantil Joana de Gusmão
Mariosa, Nayara Ferreira
Fenilcetonúria
Fenilalanina
Adesão
Tratamento
title_short Fatores associados à adesão ao tratamento dos pacientes com fenilcetonúria atendidos no Hospital Infantil Joana de Gusmão
title_full Fatores associados à adesão ao tratamento dos pacientes com fenilcetonúria atendidos no Hospital Infantil Joana de Gusmão
title_fullStr Fatores associados à adesão ao tratamento dos pacientes com fenilcetonúria atendidos no Hospital Infantil Joana de Gusmão
title_full_unstemmed Fatores associados à adesão ao tratamento dos pacientes com fenilcetonúria atendidos no Hospital Infantil Joana de Gusmão
title_sort Fatores associados à adesão ao tratamento dos pacientes com fenilcetonúria atendidos no Hospital Infantil Joana de Gusmão
author Mariosa, Nayara Ferreira
author_facet Mariosa, Nayara Ferreira
author_role author
dc.contributor.none.fl_str_mv Pereira, Elayne
dc.contributor.author.fl_str_mv Mariosa, Nayara Ferreira
dc.subject.por.fl_str_mv Fenilcetonúria
Fenilalanina
Adesão
Tratamento
topic Fenilcetonúria
Fenilalanina
Adesão
Tratamento
description Introduction: Phenylketonuria (PKU) is a disease of autosomal genetic inheritance which promotes a change in the metabolism of amino acids with increased phenylalanine (phe) in the blood and impairment in cellular communication. Adherence to treatment linked to the maintenance of a restricted diet in phenylalanine and control of metabolic levels, is a great challenge with high impact on family quality of life. Objectives: To analyze the factors associated with adherence to the treatment of patients with Phenylketonuria treated at the Hospital Joana de Gusmão - Florianópolis - SC, in the period between August 2015 and November 2016. Method: Cross-sectional observational study with case-control type analysis. Data from patients between 0 and 41 years of age were collected and analyzed from 50 charts, and interviews were conducted with those who were responsible for the patients. Approved in CEP Unisul. Results: The prevalence of adherence to treatment was 52.2% in patients younger than 13 years of age, 92.3% of patients adhering to treatment started treatment in childhood, 41.7% of those responsible for the patients, adhering to treatment, have more than 8 years of schooling and 75% reported on government failure to provide the formula. Conclusion: The treatment adherence depends on demographic factors like the age of the patients, as well the early beginning of treatment, well known about phenylketonuria and the adequate supply of the metabolic formula, that can contribute for the maintenance of phenylalanine levels.
publishDate 2017
dc.date.none.fl_str_mv 2017-07-12T23:41:51Z
2017-07-12T23:41:51Z
2017
2020-11-29T02:28:51Z
2020-11-29T02:28:51Z
dc.type.status.fl_str_mv info:eu-repo/semantics/publishedVersion
dc.type.driver.fl_str_mv info:eu-repo/semantics/bachelorThesis
format bachelorThesis
status_str publishedVersion
dc.identifier.uri.fl_str_mv https://repositorio.animaeducacao.com.br/handle/ANIMA/9446
url https://repositorio.animaeducacao.com.br/handle/ANIMA/9446
dc.language.iso.fl_str_mv por
language por
dc.relation.none.fl_str_mv Medicina - Pedra Branca
dc.rights.driver.fl_str_mv Attribution-NonCommercial-NoDerivs 3.0 Brazil
http://creativecommons.org/licenses/by-nc-nd/3.0/br/
info:eu-repo/semantics/openAccess
rights_invalid_str_mv Attribution-NonCommercial-NoDerivs 3.0 Brazil
http://creativecommons.org/licenses/by-nc-nd/3.0/br/
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv 53 f.
application/pdf
dc.coverage.none.fl_str_mv Palhoça
dc.source.none.fl_str_mv reponame:Repositório Universitário da Ânima (RUNA)
instname:Ânima Educação
instacron:Ânima
instname_str Ânima Educação
instacron_str Ânima
institution Ânima
reponame_str Repositório Universitário da Ânima (RUNA)
collection Repositório Universitário da Ânima (RUNA)
repository.name.fl_str_mv Repositório Universitário da Ânima (RUNA) - Ânima Educação
repository.mail.fl_str_mv contato@animaeducacao.com.br
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