Primary and Secondary Caregiver Reports of Quality of Life in Pediatric Asthma: Are they Comparable?

Abstract

This study aimed to compare primary and secondary caregiver QOL within families of children with asthma and determine the potential importance of including secondary caregiver QOL in clinical and research settings. Participants included 118 families of children with asthma that had primary and secondary caregivers. Families completed measures in a single research session. Caregivers reported on QOL, psychological functioning, and family burden; children completed a measure of QOL. Child lung function was determined from objective spirometry. Adherence to prescribed controller medication was measured for 6 weeks following the research visit. Primary caregiver QOL was significantly lower than secondary caregiver QOL (Mean overall QOL of 5.85 versus 6.17, p < .05). Better medication adherence was associated with higher primary caregiver QOL (ρ = .22, p = .02); secondary caregiver QOL, not primary caregiver QOL, was positively associated with child QOL (ρ = .20, p = .03). Families with discrepant QOL scores between caregivers (difference in scores of at least .50) were characterized by more family burden and primary caregiver psychological symptoms. Differences in QOL scores between caregivers may be a reflection of primary caregivers' greater investment in daily asthma management. In families reporting low burden and few psychological difficulties in the primary caregiver, QOL assessments from either caregiver may may be informative and representative of how parents are adapting to child asthma. In families experiencing high levels of burden or more primary caregiver psychological difficulties, QOL reports from secondary caregivers may not be as clinically meaningful.