Health-related Quality of Life in Newly Diagnosed Pediatric Celiac Disease Patients.

OBJECTIVES Celiac disease (CD) is a common chronic condition with potential adverse physical and psychosocial implications for affected children. The study purpose was to characterize health-related quality of life (HRQOL) in a large sample of pediatric patients with newly diagnosed CD using the PedsQL™ 4.0 Generic Core Scales, and compare it to that of healthy children and children with non-celiac GI conditions using historic data. METHODS The PedsQL™ was administered to 159 children with newly diagnosed CD and their parents at either the time of diagnostic esophagogastroduodenoscopy or prior to their initial dietitian appointment for gluten-free diet teaching. Mean parent-report and self-report PedsQL™ summary and subscale scores were calculated, then compared to published means from a sample of healthy children and a sample of children with non-celiac GI symptoms using one-sample t-tests. RESULTS Compared to the healthy children, those with newly diagnosed CD had lower Total Scores, Physical Health, Psychosocial Health, Emotional Functioning, and School Functioning on parent-report (p < 0.008) with similar findings on self-report. Within the CD sample, clinically significant scores were found in 55.9% for School Functioning, 62.7% for Physical Health, 54.4% for Emotional Functioning, 43.7% for Social Functioning, and 49% for Total Score. CONCLUSIONS Children and adolescents with newly diagnosed CD had lower HRQOL than healthy children and similar HRQOL to that of patients with non-celiac GI conditions. Patients with deficits in domains such as school or emotional functioning may benefit from early interventions including a Section 504 plan or meeting with a psychologist or social worker.