Abstract
BACKGROUND: Health-related quality of life (HRQL) brings together various aspects of an individual's subjective experience that relate both directly and indirectly to health, disease, disability, and impairment. Although asthma is the most common chronic disease in childhood, information on pediatric patients' views on asthma-specific HRQL has not been described before. The aim of this study was to establish the components of asthma-specific HRQL, as experienced by primary school-aged asthmatic children. The generated components will be used to develop an individualized HRQL instrument for childhood asthma. METHODS: Primary school-aged asthmatic children were invited to participate in three consecutive focus group sessions. A total of five focus groups were formed. Two reviewers independently 1) identified trends in the statements and relations between HRQL components, 2) clustered the components into a small number of domains and, 3) made a model on asthma-specific HRQL based on the transcribed statements of the children. The results were compared between the two reviewers and resulted in a final model. RESULTS: Asthma influenced the life of the children physically, emotionally and socially. The most important components of HRQL were the effects on, and consequences of asthma on peer relationships (e.g., being bullied), the dependence on medication, shortness of breath, cough, limitations in activities and limitations due to the response on cigarette smoke exposure. CONCLUSION: The outcome of the focus group meetings indicates that asthma influences the life of children in various ways. Not all essential components of HRQL, according to the children, are part of existing asthma-specific HRQL instruments.
