|dc.description.abstract||Health-Related Quality of Life (HRQOL) is the leading construct for measuring the impact of chronic illness on general well-being in pediatric populations. Little is known about what factors contribute to HRQOL in pediatric cystic fibrosis (CF). The current study hypothesized that family functioning and treatment burden would impact HRQOL and explored treatment burden as a potential moderator using self and parent-proxy reports.
Self-report results confirmed that “unhealthy” family functioning (F(4,43) = 3.83, p = 0.01, R² = 0.26, R²adjusted = 0.20) predicted poor HRQOL, controlling for age and disease severity. Greater treatment burden perceptions were also associated with poor HRQOL using a self-report score (F(4,43) = 4.14, p = 0.01, R² = 0.28, R²adjusted = 0.21) and the CFQ-R treatment burden subscale (F(4,45) = 3.29, p = 0.01, R² = 0.29, R²adjusted = 0.20), controlling for age and disease severity. Parent-proxy report results demonstrated significant relationships for family functioning (α = -0.34, p < 0.05) and treatment burden (α = 0.46, p < 0.05) with HRQOL as well. Moderation analyses indicated that the relationship between family functioning and HRQOL was not dependent upon treatment burden perceptions in either child or parent-proxy report. However, the overall models suggested that together age, disease severity, family functioning, and treatment burden accounted for significant variance in HRQOL scores for self-report (R² = 0.32, F(5,47) = 4.03, p = 0.004) and parent-proxy report (R²= 0.25, F(2,23) = 3.90, p = 0.035).
Results confirm previous findings that family functioning is related to HRQOL in pediatric CF. This is the first study to suggest that perceptions of treatment burden are related to HRQOL. Overall findings suggest that children who experience “unhealthy” family functioning and greater treatment burden perceptions are at risk for experiencing diminished HRQOL. Intervention efforts to promote familial support and monitoring perceptions of treatment burden may be useful in promoting greater HRQOL within pediatric CF.||en