Avaliacão da concordância entre o autorrelato da criança e do proxy na avaliação da qualidade de vida à saúde em pacientes com bronquiolite obliterante
Autor(a) principal: | |
---|---|
Data de Publicação: | 2018 |
Tipo de documento: | Dissertação |
Idioma: | por |
Título da fonte: | Biblioteca Digital de Teses e Dissertações da PUC_RS |
Texto Completo: | http://tede2.pucrs.br/tede2/handle/tede/8294 |
Resumo: | Introduction: Post-Infectious Obliterating Bronchiolitis is a chronic obstructive pulmonary disease that affects the distal airways. Pneumopathy is rare and severe, does not have a definite cause, numerous causes lead to the picture of a secondary insult. Subjective measures such as health-related quality of life (HRQoL) are being increasingly used to measure the impact of Bronchiolitis Obliterans on children's lives. Currently, there is a paucity of studies that have evaluated health-related quality of life in patients with Post-Infectious Bronchiolitis Obliterating. Objective: To assess the level of agreement in health-related quality of life (HRQoL) between children with Post Infectious Bronchiolitis Obliterans (PIBOPI) and their parent (so-called proxy). Methodology: Participants aged between 8-17, which had been previously diagnosed with PIBOPI, were regularly followed up at a pediatric pulmonology outpatient clinic. Parents or legal guardians (caregivers) of these patients were also recruited for they. A validated and age-appropriate version of the Pediatric Quality of Life Inventory 4.0 (PedsQL) was used for the assessment of HRQoL. Caregivers completed the corresponding proxy versions of the questionnaire. The correlation between self and proxy reports of HRQoL was determined by intra-class correlation coefficient (ICC), and dependent t-tests. Results: The majority of the participants were males (79.4%), and the average age was 11.8 years. Intra-class correlations between each of the PedsQL domains and the total score were all lower than 0.6, with a range between 0.267 (poor) and 0.530 (fair). When the means of each domain and the total score of the questionnaires were compared, caregivers were observed to score significantly lower HRQoL than children, with the exception of the social domain in which the difference was not significant. However, the differences in score exceeded the critical threshold difference of 4 points in all other domains. Conclusions: Proxys from patients with Post Infectious Bronchiolitis Obliterans tend to report lower quality of life scores than patients themselves. |
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Mattiello, Ritahttp://lattes.cnpq.br/4920515067971772http://lattes.cnpq.br/3357341883599721Arend, Márcia Helena Rodrigues de Freitas2018-09-27T11:25:52Z2018-06-25http://tede2.pucrs.br/tede2/handle/tede/8294Introduction: Post-Infectious Obliterating Bronchiolitis is a chronic obstructive pulmonary disease that affects the distal airways. Pneumopathy is rare and severe, does not have a definite cause, numerous causes lead to the picture of a secondary insult. Subjective measures such as health-related quality of life (HRQoL) are being increasingly used to measure the impact of Bronchiolitis Obliterans on children's lives. Currently, there is a paucity of studies that have evaluated health-related quality of life in patients with Post-Infectious Bronchiolitis Obliterating. Objective: To assess the level of agreement in health-related quality of life (HRQoL) between children with Post Infectious Bronchiolitis Obliterans (PIBOPI) and their parent (so-called proxy). Methodology: Participants aged between 8-17, which had been previously diagnosed with PIBOPI, were regularly followed up at a pediatric pulmonology outpatient clinic. Parents or legal guardians (caregivers) of these patients were also recruited for they. A validated and age-appropriate version of the Pediatric Quality of Life Inventory 4.0 (PedsQL) was used for the assessment of HRQoL. Caregivers completed the corresponding proxy versions of the questionnaire. The correlation between self and proxy reports of HRQoL was determined by intra-class correlation coefficient (ICC), and dependent t-tests. Results: The majority of the participants were males (79.4%), and the average age was 11.8 years. Intra-class correlations between each of the PedsQL domains and the total score were all lower than 0.6, with a range between 0.267 (poor) and 0.530 (fair). When the means of each domain and the total score of the questionnaires were compared, caregivers were observed to score significantly lower HRQoL than children, with the exception of the social domain in which the difference was not significant. However, the differences in score exceeded the critical threshold difference of 4 points in all other domains. Conclusions: Proxys from patients with Post Infectious Bronchiolitis Obliterans tend to report lower quality of life scores than patients themselves.Introdução: Bronquiolite Obliterante Pós-Infecciosa é uma doença pulmonar obstrutiva crônica, que afeta as vias aéreas distais. A doença é rara e grave, não tem uma causa definida, inúmeras causas levam ao quadro de um insulto secundário. Medidas subjetivas como qualidade de vida relacionada à saúde (QVRS),estão sendo cada vez mais utilizado para aferir o impacto da Bronquiolite Obliterante na vida das crianças. Atualmente, existe uma escassez de estudos que tenham avaliado a qualidade de vida relacionada à saúde em pacientes com Bronquiolite Obliterante Pós-infecciosa. Objetivo: Avaliar o nível de concordância da Qualidade de Vida Relacionada à Saúde (QVRS) entre crianças com Bronquiolite Obliterante Pós-infecciosa (BOPI) e seus pais (Proxy). Métodos: Participantes com idade entre 8-17 anos, previamente diagnosticados com BOPI, foram acompanhados regularmente em ambulatórios especializados de pneumologia pediátrica. Os pais ou os representantes legais (cuidadores) destes pacientes também foram recrutados para o estudo. Para avaliação da QVRS foi aplicada a versão validada do instrumento Pediatric Quality of Life Inventory 4.0 (PedsQl). Os cuidadores responderam a versão correspondente do questionário para o Proxy. A correlação dos relatos da QVRS entre as crianças e seus Proxy foi determinado mediante o coeficiente de correlação intraclasse (CCI) e teste t para a amostras independentes. Resultados: A maioria dos participantes era do sexo masculino, (79,4%), a média de idade foi de 11,8 anos. Os CCI entre cada um dos domínios do PedsQL, bem como o escore total foram inferiores a 0,6, variando entre 0,267 (pobre) e 0,530 (satisfatória). As médias dos domínios e do escore total dos questionários respondidos pelos pacientes e aquelas relatadas pelos responsáveis comparadas demonstraram que o escore dos cuidadores foi significativamente menor do que o das crianças, com exceção apenas para o domínio social, cuja diferença não foi significativa. Todavia, as diferenças ultrapassaram a diferença mínima importante de 4 pontos no escore para todos os domínios. Conclusão: Os Proxys dos pacientes com Bronquiolite Obliternante Pós-infecciosa tendem a relatar menores escores de qualidade de vida que os próprios pacientes.Submitted by PPG Pediatria e Saúde da Criança (pediatria-pg@pucrs.br) on 2018-09-25T11:25:50Z No. of bitstreams: 1 Dissertação Marcia 1009.pdf: 1390337 bytes, checksum: ffbfe58c2bec3b4163c252680f70cb88 (MD5)Approved for entry into archive by Sheila Dias (sheila.dias@pucrs.br) on 2018-09-27T11:21:25Z (GMT) No. of bitstreams: 1 Dissertação Marcia 1009.pdf: 1390337 bytes, checksum: ffbfe58c2bec3b4163c252680f70cb88 (MD5)Made available in DSpace on 2018-09-27T11:25:52Z (GMT). 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dc.title.por.fl_str_mv |
Avaliacão da concordância entre o autorrelato da criança e do proxy na avaliação da qualidade de vida à saúde em pacientes com bronquiolite obliterante |
title |
Avaliacão da concordância entre o autorrelato da criança e do proxy na avaliação da qualidade de vida à saúde em pacientes com bronquiolite obliterante |
spellingShingle |
Avaliacão da concordância entre o autorrelato da criança e do proxy na avaliação da qualidade de vida à saúde em pacientes com bronquiolite obliterante Arend, Márcia Helena Rodrigues de Freitas Qualidade de Vida Relacionada à Saúde Bronquiolite Obliterante Crianças Health-Related Quality of Life Bronchiolitis Obliterans Children CIENCIAS DA SAUDE::MEDICINA |
title_short |
Avaliacão da concordância entre o autorrelato da criança e do proxy na avaliação da qualidade de vida à saúde em pacientes com bronquiolite obliterante |
title_full |
Avaliacão da concordância entre o autorrelato da criança e do proxy na avaliação da qualidade de vida à saúde em pacientes com bronquiolite obliterante |
title_fullStr |
Avaliacão da concordância entre o autorrelato da criança e do proxy na avaliação da qualidade de vida à saúde em pacientes com bronquiolite obliterante |
title_full_unstemmed |
Avaliacão da concordância entre o autorrelato da criança e do proxy na avaliação da qualidade de vida à saúde em pacientes com bronquiolite obliterante |
title_sort |
Avaliacão da concordância entre o autorrelato da criança e do proxy na avaliação da qualidade de vida à saúde em pacientes com bronquiolite obliterante |
author |
Arend, Márcia Helena Rodrigues de Freitas |
author_facet |
Arend, Márcia Helena Rodrigues de Freitas |
author_role |
author |
dc.contributor.advisor1.fl_str_mv |
Mattiello, Rita |
dc.contributor.advisor1Lattes.fl_str_mv |
http://lattes.cnpq.br/4920515067971772 |
dc.contributor.authorLattes.fl_str_mv |
http://lattes.cnpq.br/3357341883599721 |
dc.contributor.author.fl_str_mv |
Arend, Márcia Helena Rodrigues de Freitas |
contributor_str_mv |
Mattiello, Rita |
dc.subject.por.fl_str_mv |
Qualidade de Vida Relacionada à Saúde Bronquiolite Obliterante Crianças |
topic |
Qualidade de Vida Relacionada à Saúde Bronquiolite Obliterante Crianças Health-Related Quality of Life Bronchiolitis Obliterans Children CIENCIAS DA SAUDE::MEDICINA |
dc.subject.eng.fl_str_mv |
Health-Related Quality of Life Bronchiolitis Obliterans Children |
dc.subject.cnpq.fl_str_mv |
CIENCIAS DA SAUDE::MEDICINA |
description |
Introduction: Post-Infectious Obliterating Bronchiolitis is a chronic obstructive pulmonary disease that affects the distal airways. Pneumopathy is rare and severe, does not have a definite cause, numerous causes lead to the picture of a secondary insult. Subjective measures such as health-related quality of life (HRQoL) are being increasingly used to measure the impact of Bronchiolitis Obliterans on children's lives. Currently, there is a paucity of studies that have evaluated health-related quality of life in patients with Post-Infectious Bronchiolitis Obliterating. Objective: To assess the level of agreement in health-related quality of life (HRQoL) between children with Post Infectious Bronchiolitis Obliterans (PIBOPI) and their parent (so-called proxy). Methodology: Participants aged between 8-17, which had been previously diagnosed with PIBOPI, were regularly followed up at a pediatric pulmonology outpatient clinic. Parents or legal guardians (caregivers) of these patients were also recruited for they. A validated and age-appropriate version of the Pediatric Quality of Life Inventory 4.0 (PedsQL) was used for the assessment of HRQoL. Caregivers completed the corresponding proxy versions of the questionnaire. The correlation between self and proxy reports of HRQoL was determined by intra-class correlation coefficient (ICC), and dependent t-tests. Results: The majority of the participants were males (79.4%), and the average age was 11.8 years. Intra-class correlations between each of the PedsQL domains and the total score were all lower than 0.6, with a range between 0.267 (poor) and 0.530 (fair). When the means of each domain and the total score of the questionnaires were compared, caregivers were observed to score significantly lower HRQoL than children, with the exception of the social domain in which the difference was not significant. However, the differences in score exceeded the critical threshold difference of 4 points in all other domains. Conclusions: Proxys from patients with Post Infectious Bronchiolitis Obliterans tend to report lower quality of life scores than patients themselves. |
publishDate |
2018 |
dc.date.accessioned.fl_str_mv |
2018-09-27T11:25:52Z |
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2018-06-25 |
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http://tede2.pucrs.br/tede2/handle/tede/8294 |
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http://tede2.pucrs.br/tede2/handle/tede/8294 |
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por |
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por |
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Pontifícia Universidade Católica do Rio Grande do Sul |
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Programa de Pós-Graduação em Medicina/Pediatria e Saúde da Criança |
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PUCRS |
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Brasil |
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Pontifícia Universidade Católica do Rio Grande do Sul |
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