Disease-Specific Symptoms and Health-Related Quality of Life in Children and Adolescents with Inflammatory Bowel Disease

Abstract

This study assesses generic and disease-specific Health-Related Quality of Life (HRQOL) in children and adolescents with Inflammatory Bowel Disease (IBD). More specifically, the purpose of the study is to address the relationship between disease- specific indicators, both on a symptom-by-symptom basis and as a whole, to overall HRQOL. Self- and proxy-report versions of the Pediatric Quality of Life Inventory™ (PedsQL™) Generic Core Scales and the newly developed Pediatric Quality of Life Inventory™ Gastrointestinal Symptoms Module were administered to 187 parent-child dyads at ten study sites across the United States. Disease-specific indicators included: stomach pain, stomach upset, trouble swallowing, heartburn and reflux, gas and bloating, constipation, and diarrhea. It was hypothesized that caregiver- and child-reported disease-specific HRQOL would be positively correlated with generic HRQOL, and that physical disease-specific indicators would contribute the greatest variance in total generic HRQOL scores, for both self and proxy report. Results confirmed the hypothesis that disease-specific HRQOL would be positively correlated with generic HRQOL for children and caregivers. Multivariate regression results revealed that the Stomach Pain and Hurt, Worry, Medicines, and Communication scales contributed the most variance to overall HRQOL scores for children. The same analysis performed for parent ratings yielded one statistically significant scale: Worry. In essence, intervention efforts aimed at reducing the influence of worry and anxiety may prove more effective in improving HRQOL outcomes than interventions targeting reduction of physical symptoms.