Effect of asthma on the quality of life among children and their caregivers in the Atlanta empowerment zone

Background and Objective. Asthma is the most common chronic pediatric disea se and exacts a toll on the health-related quality of life of affected chil dren and their primary caregivers. This investigation describes the relatio nship 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 care givers of 5-12-year-old children with asthma. Questions addressed the histo ry, diagnosis, and management of the child's asthma, the child's family and social background, the family's socioeconomic status, the caregiver's know ledge and attitude about asthma, and the health-related quality of life of both the child and the caregiver. An asthma severity score was calculated f rom the caregiver's responses to questions about their child's wheezing fre quency, nocturnal and early morning symptoms, and speaking during an asthma attack, as well as the impact of the disease on their child's physical act ivity and breathing during the prior 4-month period. A clinical asthma tria ge score was determined from information collected at the emergency departm ent about the child's oxygen saturation, alertness, use of accessory respir atory 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 pri mary caregivers, 69% had at least completed high school, and 90% reported a total monthly household income of $1,600 or less. The maximum possible qua lity-of-lire score and the median for caregivers were 91 and 70, respective ly; 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 child ren missed (r = -0.24 and r = -0.26, respectively, P < .001 for both) and t he 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 chi ldren and caregivers did not correlate significantly with the asthma triage scores. Conclusions. The questionnaires captured baseline quality-of-life informati on about this urban population and will facilitate longitudinal monitoring. The fact that the quality-of-life scores of children with asthma correlate d with those of their adult caregivers, but not with their clinical triage scores, highlights the impact of asthma on families and the importance of h aving a long-term comprehensive management plan that is not based on exacer bations, but that includes both the children and their primary caregivers.