Assessing proxy reports: Agreement between children with asthma and their caregivers on quality of life

Background: Health-related quality of life (HRQOL) questionnaires are important tools to evaluate health status in children with asthma; however, children with asthma and their caregivers have shown only low to moderate agreement in their responses. Objective: To analyze the agreement between children with asthma and their caregivers on HRQOL, specifically in the domains of activity limitation, emotional function, and overall quality of life (QOL). Methods: We enrolled 79 pediatric patients (ages 5-17 years) with asthma (53 with acute asthma and 26 with refractory asthma) and their caregivers. Children completed the Pediatric Asthma Quality of Life Questionnaire, and caregivers completed the Pediatric Asthma Caregiver's Quality of Life Questionnaire (potential score, 1-7; higher scores indicate better QOL). We used paired t test to examine differences in child and caregiver responses, Pearson correlation to describe patterns of agreement, and multivariate analysis to evaluate the effect of sex, age, and ethnicity on differences in child and caregiver responses. Results: Children with asthma and their caregivers reported similar scores and demonstrated moderate correlation in emotional function and overall QOL. Children reported a significantly better QOL than their caregivers in response to questions about activity limitation (mean score, 4.62 vs 3.49; P <.001). Male children were more likely to differ from their caregivers than females, especially in regard to activity limitation. Conclusion: Although caregivers of children with asthma can provide useful proxy information about QOL, their responses cannot be substituted for their children's reports regarding activity limitation. Clinicians and researchers should ask both children and their caregivers about asthma-specific QOL.