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A qualidade de vida dos doentes com fibrose quística
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Introdução: A Fibrose Quística é uma patologia hereditária que compromete o funcionamento de vários órgãos e sistemas, com grandes implicações na qualidade de vida, reportada em instrumentos genéricos e específicos, nomeadamente pela sintomatologia e esquema terapêutico.
Objetivos: Avaliar a qualidade de vida em doentes com Fibrose Quistica através de um instrumento genérico e um específico. Relacionar os resultados com a gravidade do FEV1. Verificar se existe correlação entre os resultados dos dois questionários.
Métodos: Estudo observacional descritivo em doentes seguidos na Unidade de Fibrose Quística de adultos do Hospital de Santa Maria. Foram obtidos dados sociodemográficos e funcionais e os participantes preencheram os questionários de qualidade de vida EQ-5D-3L e CFQ-R 14+. Critérios de exclusão: doentes submetidos a transplante pulmonar, em exacerbação ou com seguimento irregular.
Resultados: Analisados 34 doentes (sexo masculino 52,9%), com média de idade 30,15±9,2 anos e de FEV1 62,47±20,8%. A maioria dos doentes (76,5-97,4%) reportou não ter problemas no EQ-5D-3L. A média do índice de valor foi de 0,868±0,201. A média nos domínios do CFQ-R foi de 62,745 a 88,562. De uma forma geral, quanto maior a gravidade da função pulmonar (FEV1), menor a qualidade de vida reportada. Alguns domínios do CFQ-R (com exceção da imagem corporal, alimentação, peso e tratamento) correlacionaram-se de forma significativa com o índice de valor do EQ-5D-3L, com intensidades variáveis (índice de Pearson 0,010-0,692).
Discussão: Em geral e em ambos os instrumentos, os doentes reportaram boa qualidade de vida. Verificou-se uma associação entre o agravamento da função respiratória e o agravamento de alguns domínios da qualidade de vida. Há correlação estatisticamente significativa e forte/moderada entre alguns domínios do CFQ-R e o índice de valor do EQ-5D-3L.
Introduction: Cystic fibrosis is an inherited disorder that affects several organs and systems, with major implications in the quality of life reported in generic and specific instruments, particularly influenced by the symptoms and treatment regimen. Objectives: Assess the quality of life in patients with cystic fibrosis using a generic and a specific instrument. Correlate the quality of life results to the severity of FEV1. Verify if there is a correlation between the results of the two questionnaires. Methods: Observational descriptive study in patients followed in the adult Cystic Fibrosis Unit of the Hospital of Santa Maria. Sociodemographic and functional data were obtained and participants filled the EQ-5D-3L and CFQ-R 14+ quality of life questionnaires. Exclusion criteria: patients undergoing lung transplantation, during an exacerbation or with irregular follow-up. Results: The study included 34 patients (52.9% male), mean age 30.15±9.2 years and FEV1 62.47±20.8%. The majority of patients (76.5 to 97.4%) reported having no problems in the EQ-5D-3L. The utility values average was 0.868±0.201. The CFQ-R domains average was 62.745 to 88.562. In general, the higher severity of lung function (FEV1), the lower quality of life reported. Some CFQ-R domains (with the exception of body image, diet, weight and treatment) correlated significantly with the EQ-5D-3L utility value, with variable strength (Pearson's coefficient 0.010 to 0.692). Discussion: Generally and in both instruments, patients reported an high quality of life. There was an association between lung function decline and worsening quality of life in some domains. There are statistically significant and strong/moderate correlation between some CFQ-R domains and the EQ-5D-3L utility value.
Introduction: Cystic fibrosis is an inherited disorder that affects several organs and systems, with major implications in the quality of life reported in generic and specific instruments, particularly influenced by the symptoms and treatment regimen. Objectives: Assess the quality of life in patients with cystic fibrosis using a generic and a specific instrument. Correlate the quality of life results to the severity of FEV1. Verify if there is a correlation between the results of the two questionnaires. Methods: Observational descriptive study in patients followed in the adult Cystic Fibrosis Unit of the Hospital of Santa Maria. Sociodemographic and functional data were obtained and participants filled the EQ-5D-3L and CFQ-R 14+ quality of life questionnaires. Exclusion criteria: patients undergoing lung transplantation, during an exacerbation or with irregular follow-up. Results: The study included 34 patients (52.9% male), mean age 30.15±9.2 years and FEV1 62.47±20.8%. The majority of patients (76.5 to 97.4%) reported having no problems in the EQ-5D-3L. The utility values average was 0.868±0.201. The CFQ-R domains average was 62.745 to 88.562. In general, the higher severity of lung function (FEV1), the lower quality of life reported. Some CFQ-R domains (with the exception of body image, diet, weight and treatment) correlated significantly with the EQ-5D-3L utility value, with variable strength (Pearson's coefficient 0.010 to 0.692). Discussion: Generally and in both instruments, patients reported an high quality of life. There was an association between lung function decline and worsening quality of life in some domains. There are statistically significant and strong/moderate correlation between some CFQ-R domains and the EQ-5D-3L utility value.
Descrição
Trabalho Final do Curso de Mestrado Integrado em Medicina, Faculdade de Medicina, Universidade de Lisboa, 2016
Palavras-chave
Qualidade de vida Fibrose quística Pneumologia