ABSTRACT
Abstract Objective: To assess the level of agreement in health-related quality of life between children with Post-infectious Bronchiolitis Obliterans and their parent (so-called proxy). Methods: Participants aged between 8and 17 years who had been previously diagnosed with Post-infectious Bronchiolitis Obliterans were regularly followed up at a pediatric pulmonology outpatient clinic. Parents or legal guardians (caregivers) of these patients were also recruited for the study. A validated and age-appropriate version of the Pediatric Quality of Life Inventory 4.0 was used for the assessment of health-related quality of life. Caregivers completed the corresponding proxy versions of the questionnaire. The correlation between self and proxy reports of health-related quality of life was determined by intra-class correlation coefficient and dependent t-tests. Results: The majority of participants were males (79.4%), and the average age was 11.8 years. Intra-class correlations between each of the Pediatric Quality of Life Inventory 4.0 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 have a significantly lower health-related quality of life score 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 four points in all other domains. Conclusion: Proxies of children and adolescents with Post-infectious Bronchiolitis Obliterans appear to consistently perceive their children as having lower health-related quality of life than how the patients perceive themselves.
Resumo: Objetivo: Avaliar o nível de concordância a respeito da qualidade de vida relacionada à saúde entre crianças com bronquiolite obliterante pós-infecciosa e seus pais (responsáveis). Métodos: Os participantes entre 8-17 anos, anteriormente diagnosticados com bronquiolite obliterante pós-infecciosa, foram acompanhados regularmente no ambulatório de pneumologia pediátrica. Os pais ou responsáveis legais (cuidadores) desses pacientes também foram convidados a participar do estudo. Uma versão validada e adequada para a idade do Inventário Pediátrico de Qualidade de Vida, versão 4.0, foi utilizada para a avaliação da qualidade de vida relacionada à saúde. Os cuidadores concluíram as versões do questionário correspondentes aos responsáveis. A correlação entre os autorrelatos e os relatos dos responsáveis da qualidade de vida relacionada à saúde foi determinada pelo coeficiente de correlação intraclasse e pelos testes t dependentes. Resultados: A maior parte dos participantes era do sexo masculino (79,4%) e a idade média foi 11,8 anos. As correlações intraclasse entre cada um dos domínios do Inventário Pediátrico de Qualidade de Vida e o escore total foram todas inferiores a 0,6, com intervalo entre 0,267 (baixo) e 0,530 (justo). Quando as médias de cada domínio e o escore total dos questionários foram comparados, observamos que os cuidadores apresentaram qualidade de vida relacionada à saúde significativamente menor em comparação com as crianças, com exceção do domínio social, no qual a diferença não foi significativa. Contudo, as diferenças no escore ultrapassaram o limite de diferença essencial de 4 pontos em todos os outros domínios. Conclusão: Os responsáveis pelas crianças e adolescentes com bronquiolite obliterante pós-infecciosa parecem perceber de forma consistente que suas crianças possuem qualidade de vida relacionada à saúde menor que os próprios pacientes.
Subject(s)
Humans , Male , Female , Child , Adolescent , Quality of Life/psychology , Bronchiolitis Obliterans/physiopathology , Parents , Respiratory Function Tests , Severity of Illness Index , Bronchiolitis Obliterans/psychology , Chronic Disease , Surveys and Questionnaires , Statistics, Nonparametric , Sickness Impact Profile , Lung/physiopathologyABSTRACT
Abstract Objective: To evaluate the overall health-related quality of life in patients with bronchiolitis obliterans. Methods: Participants with a diagnosis of post-infectious bronchiolitis obliterans, who were being followed-up at two specialized outpatient clinics of Pediatric Pulmonology in Porto Alegre, Brazil, and controls aged between 8 and 17 years, of both genders, were included in the study. Controls were paired by gender, age, and socioeconomic level in relation to the group of participants with post-infectious bronchiolitis obliterans. The version of the Pediatric Quality of Life Inventory (PedsQ) tool validated for Brazil was applied for the assessment of Health-related Quality of Life, through an interview. The comparison of the Health-related Quality of Life means between the groups was performed using Student's t-test for independent samples and the chi-squared test, for categorical variables. Results: 34 patients diagnosed with post-infectious bronchiolitis obliterans and 34 controls participated in the study. The mean age of the children included in the study was 11.2 ± 2.5 years, and 49 (72%) of them were males. The groups showed no significant differences in relation to these variables. The quality of life score was significantly and clinically lower in the post-infectious bronchiolitis obliterans group when compared with controls in the health (72.36 ± 15.6, 81.06 ± 16.4, p = 0.031) and school domains (62.34 ± 20.7, 72.94 ± 21.3, p = 0.043), as well as in the total score (69.53 ± 14.9, 78.02 ± 14.8, p = 0.024), respectively. Conclusion: Patients with post-infectious bronchiolitis obliterans presented lower health-related quality of life scores when compared with healthy individuals in the total score and in the health and school domains.
Resumo Objetivo: Avaliar a qualidade de vida relacionada à saúde geral em participantes com bronquiolite obliterante. Métodos: Foram incluídos no estudo participantes com diagnóstico de bronquiolite obliterante pós-infecciosa que estavam em acompanhamento em dois ambulatórios especializados de pneumologia pediátrica em Porto Alegre, Brasil e controles, entre 8 e 17 anos, de ambos os sexos. Os controles foram pareados por sexo, idade e nível socioeconômico em relação ao grupo de participantes com bronquiolite obliterante pós-infecciosa. Para avaliação da Qualidade de Vida Relacionada à Saúde geral foi aplicado a versão validada para o Brasil do instrumento PedsQL (Pediatric Quality of Life Inventory), por meio de entrevista. A comparação entre as médias da Qualidade de Vida Relacionada à Saúde entre os grupos foi realizada mediante o teste t para amostras independentes e para as variáveis categóricas por teste qui-quadrado. Resultados: Participaram do estudo 34 pacientes com diagnóstico de bronquiolite obliterante pós-infecciosa e 34 controles. A média da idade das crianças incluídas foi de 11,2 ± 2,5 anos e 49 (72%) deles eram do sexo masculino. Os grupos não apresentaram diferenças significativas em relação a essas variáveis. O escore de qualidade de vida foi significativamente e clinicamente menor no grupo bronquiolite obliterante pós-infecciosa em comparação com o controle nos domínios saúde: (72,36 ± 15,6; 81,06 ± 16,4; p = 0,031); escolar: (62,34 ± 20,7; 72,94 ± 21,3; p = 0,043) e no escore total (69,53 ± 14,9; 78,02 ± 14,8, p = 0,024), respectivamente. Conclusão: Os pacientes com bronquiolite obliterante pós-infecciosa apresentam escores de qualidade de vida relacionados à saúde menor do que indivíduos saudáveis no escore total e nos domínios saúde e escolares.
Subject(s)
Humans , Male , Female , Child , Adolescent , Young Adult , Quality of Life/psychology , Bronchiolitis Obliterans/psychology , Respiratory Function Tests , Socioeconomic Factors , Bronchiolitis Obliterans/etiology , Case-Control Studies , Surveys and QuestionnairesABSTRACT
Introduction: Adenovirus infection is an important cause of pneumonia in Chilean children. Postinfectious Bronchiolitis Obliterans (PIBO) is the most important complication. There are few studies assessing pulmonary function and quality of life in PIBO patients. Objective: The aim of this study is to assess the pulmonary function and the quality of life of patients with PIBO and the correlation between both variables. Methods: 14 children with PIBO in follow up at the pediatric pulmonology outpatient clinic of a public children hospital were included in this study. Study period: April 2009 - April 2010. Pulmonary function was assessed in a medical visit by spirometry, flow/volume curve and intrathoracic gas volume measurement. The following indices were analyzed FVC, FEV1, FEV25-75, FEV1/FVC, RV, TLC, RV and RV/TLC. A survey of a self-administered Quality of Life (PedsQL, version 4.0, Spanish for Chile) was applied at the visit to investigate their global, physical and psychosocial quality of life. The Pearson linear correlation between quality of life and the pulmonary function test parameters was assessed, in the statistical analysis ap value < 0.05 was considered significant. Results: The mean age of our patients was 12.4 (range: 9-19 years-old). The functional alterations were characteristics of an obstructive respiratory disorder in 64.3 percent of the patients. Average pulmonary function test indices showed decreases in FEV1 (75 percent), FEV25-75 (48.8 percent), FEV1/FVC (67.6 percent) with normal value of FVC (93,7 percent) as well as pronounced increases in RV (333.5 percent), TLC (156 percent) and RV/TLC (51.8 percent). Mean change of FEV1 and FEV25-75post-bronchodilator was 11.3 percent and 26.4 percent respectively. Only 14.3 percent of our patients showed normal pulmonary function. The quality of life parameters were in average 58.2 percent of overall quality of life, 58.6 percent of physical quality of life and 57.9 percent of psychosocial ...
Introducción: La infección por adenovirus es una causa importante de neumonía en niños chilenos. La bronquiolitis obliterante (BOPI) es la complicación más importante. Existen pocos estudios donde evalúen la función pulmonar y la calidad de vida de los pacientes con BOPI. Objetivo: Evaluar la función pulmonar y la calidad de vida de los pacientes con BOPI y la correlación entre ambas variables. Métodos: Se incluyeron 14 niños con BOPI en el policlínico de la unidad de broncopulmonar de un hospital público de niños. Período de estudio: abril de 2009-abril de 2010. La función pulmonar se evaluó en una visita médica por espirometría, curva flujo / volumen y la determinación de volumen de gas intratorácico. Los índices analizados fueron los siguientes CVF, VEF1, FEV25-75, VEF1/CVF, VR,CPT, VR y VR / CPT. En la misma visita se realizó una encuesta auto-administrada de Calidad de Vida (PedsQL, versión 4.0, español de Chile) para investigar la calidad de vida global, física y psi-cosocial. Se aplicó la correlación lineal de Pearson entre calidad de vida y los parámetros de función pulmonar. Se consideró estadísticamente significativo unp <0,05. Resultados: La edad media de nuestros pacientes fue de 12,4 (rango: 9-19 años). La alteración funcional característica fue la obstructiva en el 64,3 por ciento de los pacientes. El promedio de los índices de pruebas de función pulmonar mostraron una disminución en VEF1 (75 por ciento), FEV25-75 (48,8 por ciento), VEF1/CVF (67,6 por ciento) con un valor normal de la CVF (93,7 por ciento), así como aumentos pronunciados en VR (333,5 por ciento), CPT (156 por ciento) y VR/CPT (51,8 por ciento). La media del cambio del VEF1 y FEV25-75post-broncodilatador fue 11,3 por ciento y 26,4 por ciento respectivamente. Sólo el 14,3 por ciento mostró una función pulmonar normal. Los parámetros de calidad de vida fueron en promedio 58,2 por ciento de calidad de vida general, 58,6 por ciento de calidad de vida física y el 57,9 por ciento...