Background and objective: Asthma is the most common chronic pediatric disease and exacts a toll on the health-related quality of life of affected children and their primary caregivers. This investigation describes the relationship between the clinical severity of asthma among inner-city children and their quality of life and that of their primary adult caregivers.
Methods: Telephone interview data were collected from individual adult caregivers of 5-12-year-old children with asthma. Questions addressed the history, diagnosis, and management of the child's asthma, the child's family and social background, the family's socioeconomic status, the caregiver's knowledge and attitude about asthma, and the health-related quality of life of both the child and the caregiver. An asthma severity score was calculated from the caregiver's responses to questions about their child's wheezing frequency, nocturnal and early morning symptoms, and speaking during an asthma attack, as well as the impact of the disease on their child's physical activity and breathing during the prior 4-month period. A clinical asthma triage score was determined from information collected at the emergency department about the child's oxygen saturation, alertness, use of accessory respiratory muscles, extent of breathlessness, and peak expiratory flow. Spearman correlation coefficients were used to identify association between quality of life and disease severity, caretaker's asthma knowledge, and functional impact of asthma symptoms.
Results: Data from 240 of 755 eligible children were analyzed. Most children were younger than 11 years, male, black, and non-Hispanic. The children's median duration of asthma diagnosis was 86% of their life (range less than 1 to 11.3 years, median 5.0 years). Of the primary caregivers, 69% had at least completed high school, and 90% reported a total monthly household income of $1,600 or less. The maximum possible quality-of-life score and the median for caregivers were 91 and 70, respectively; for children, the same scores were 69 and 58, respectively. In addition, there was significant negative correlation of the quality-of-life scores of both the caregivers and children with the number of schooldays the children missed (r = -0.24 and r = -0.26, respectively, P < .001 for both) and the caregivers' and children's asthma severity scores (r = -0.39 and r = -0.47, respectively, P < .001 for both). The quality-of-life scores of the children and caregivers did not correlate significantly with the asthma triage scores.
Conclusions: The questionnaires captured baseline quality-of-life information about this urban population and will facilitate longitudinal monitoring. The fact that the quality-of-life scores of children with asthma correlated with those of their adult caregivers, but not with their clinical triage scores, highlights the impact of asthma on families and the importance of having a long-term comprehensive management plan that is not based on exacerbations, but that includes both the children and their primary caregivers.