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Perception of quality of life in children with cystic fibrosis and their caregivers: different perspectives

OBJECTIVE: To evaluate the perception of quality of life (QOL) in children with cystic fibrosis (CF) and their caregivers and compare the results between these groups.METHODS: A cross-sectional, descriptive study where children and adolescents between 6 and 13 years of age with a confirmed diagnosis...

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Principais autores: Santana, Nelbe Nesi, Chaves, Célia Regina Moutinho de Miranda, Campos, Daniel de Souza, Gonçalves, Christine Pereira, Gomes Junior, Saint Clair dos Santos
Formato: Artigo
Idioma: Português
Publicado em: Universidade Tecnológica Federal do Paraná (UTFPR) 2018
Acesso em linha: http://periodicos.utfpr.edu.br/rbqv/article/view/7587
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spelling peri-article-75872018-12-01T03:17:19Z Perception of quality of life in children with cystic fibrosis and their caregivers: different perspectives Percepção da qualidade de vida em crianças com fibrose cística e seus cuidadores: perspectivas diferentes Santana, Nelbe Nesi Chaves, Célia Regina Moutinho de Miranda Campos, Daniel de Souza Gonçalves, Christine Pereira Gomes Junior, Saint Clair dos Santos 4.06.00.00-9 Saúde Coletiva Fibrose cística; Qualidade de vida; Doença pulmonar obstrutiva crônica. Cystic fibrosis; Quality of life; Chronic obstructive pulmonary disease. OBJECTIVE: To evaluate the perception of quality of life (QOL) in children with cystic fibrosis (CF) and their caregivers and compare the results between these groups.METHODS: A cross-sectional, descriptive study where children and adolescents between 6 and 13 years of age with a confirmed diagnosis of CF were included. Those with a neurological condition that made it impossible to complete the QOL questionnaire were excluded. The evaluation of the QOL was performed through the CF Questionnaire, through the total score and score of each domain, being: physical, image, digestive, respiratory, emotional, social, feeding, treatment, vitality, health, social role and weight. To compare the result between the two groups, the Mann-Whitney test was performed.RESULTS: Twenty-four children, 10.86 ± 1.9 years old, 29.2% male, 47.83% colonized by Pseudomonas aeruginosa and 26.09% homozygous for the F508del mutation participated in the study. When assessing the perception of QOL by children, the feeding and treatment domains reached the highest values. By the caregivers, the physical domain was the most scored. The value reached by patients and caregivers in the total score was 73.94% and 73.86% of predicted, respectively. When assessing the agreement between the groups, there was only a statistically significant difference in the emotional and treatment domains.CONCLUSIONS: The different perceptions found point out the need to perceive that caregivers and patients experience the disease differently in the emotional and treatment domains. This understanding is important for the treatment, since it affects the QOL. OBJETIVO: Avaliar a percepção da qualidade de vida (QV) em crianças com fibrose cística (FC) e seus cuidadores e comparar os resultados entre esses grupos.MÉTODOS: Estudo transversal, descritivo, onde foram incluídos crianças e adolescentes de 6 a 13 anos de idade com diagnóstico confirmado de FC. Aqueles com condição neurológica que impossibilitasse o preenchimento do questionário de QV foram excluídos. A avaliação da QV foi realizada através do Questionário de FC, considerando o escore total e o escore de cada domínio, sendo eles: físico, imagem, digestivo, respiratório, emocional, social, alimentação, tratamento, vitalidade, saúde, papel social e peso. Para comparar o resultado entre os dois grupos, foi realizado o teste de Mann-Whitney.RESULTADOS: Participaram do estudo 24 crianças com 10,86±1,9 anos, 29,20% do gênero masculino, 47,83% colonizadas por Pseudomonas aeruginosa e 26,09% homozigotos para a mutação F508del. Ao avaliar a percepção da QV pelas crianças, os domínios alimentação e tratamento alcançaram os valores mais altos. Pelos cuidadores, o domínio físico foi o mais pontuado. O valor alcançado pelos pacientes e cuidadores no escore total foi de 73,94% e 73,86% do previsto, respectivamente. Ao avaliar a concordância entre os grupos, só houve diferença estatisticamente significante nos domínios emocional e tratamento.CONCLUSÕES: As diferentes percepções encontradas apontam a necessidade de perceber que cuidadores e pacientes vivenciam a doença de forma diferente no que se refere aos domínios emocional e tratamento. Este entendimento é importante para a realização do tratamento, visto que o mesmo impacta a QV. Universidade Tecnológica Federal do Paraná (UTFPR) 2018-09-30 info:eu-repo/semantics/article info:eu-repo/semantics/publishedVersion application/pdf http://periodicos.utfpr.edu.br/rbqv/article/view/7587 10.3895/rbqv.v10n3.7587 Revista Brasileira de Qualidade de Vida; v. 10, n. 3 (2018) 2175-0858 10.3895/rbqv.v10n3 por http://periodicos.utfpr.edu.br/rbqv/article/view/7587/5795 http://periodicos.utfpr.edu.br/rbqv/article/downloadSuppFile/7587/1101 Direitos autorais 2018 CC-BY http://creativecommons.org/licenses/by/4.0
institution Universidade Tecnológica Federal do Paraná
collection PERI
language Português
format Artigo
author Santana, Nelbe Nesi
Chaves, Célia Regina Moutinho de Miranda
Campos, Daniel de Souza
Gonçalves, Christine Pereira
Gomes Junior, Saint Clair dos Santos
spellingShingle Santana, Nelbe Nesi
Chaves, Célia Regina Moutinho de Miranda
Campos, Daniel de Souza
Gonçalves, Christine Pereira
Gomes Junior, Saint Clair dos Santos
Perception of quality of life in children with cystic fibrosis and their caregivers: different perspectives
author_sort Santana, Nelbe Nesi
title Perception of quality of life in children with cystic fibrosis and their caregivers: different perspectives
title_short Perception of quality of life in children with cystic fibrosis and their caregivers: different perspectives
title_full Perception of quality of life in children with cystic fibrosis and their caregivers: different perspectives
title_fullStr Perception of quality of life in children with cystic fibrosis and their caregivers: different perspectives
title_full_unstemmed Perception of quality of life in children with cystic fibrosis and their caregivers: different perspectives
title_sort perception of quality of life in children with cystic fibrosis and their caregivers: different perspectives
description OBJECTIVE: To evaluate the perception of quality of life (QOL) in children with cystic fibrosis (CF) and their caregivers and compare the results between these groups.METHODS: A cross-sectional, descriptive study where children and adolescents between 6 and 13 years of age with a confirmed diagnosis of CF were included. Those with a neurological condition that made it impossible to complete the QOL questionnaire were excluded. The evaluation of the QOL was performed through the CF Questionnaire, through the total score and score of each domain, being: physical, image, digestive, respiratory, emotional, social, feeding, treatment, vitality, health, social role and weight. To compare the result between the two groups, the Mann-Whitney test was performed.RESULTS: Twenty-four children, 10.86 ± 1.9 years old, 29.2% male, 47.83% colonized by Pseudomonas aeruginosa and 26.09% homozygous for the F508del mutation participated in the study. When assessing the perception of QOL by children, the feeding and treatment domains reached the highest values. By the caregivers, the physical domain was the most scored. The value reached by patients and caregivers in the total score was 73.94% and 73.86% of predicted, respectively. When assessing the agreement between the groups, there was only a statistically significant difference in the emotional and treatment domains.CONCLUSIONS: The different perceptions found point out the need to perceive that caregivers and patients experience the disease differently in the emotional and treatment domains. This understanding is important for the treatment, since it affects the QOL.
publisher Universidade Tecnológica Federal do Paraná (UTFPR)
publishDate 2018
url http://periodicos.utfpr.edu.br/rbqv/article/view/7587
_version_ 1805292563640352768
score 10,814766

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