Family ties: the impact of celiac disease on children and caregivers

Purpose To evaluate the impact of celiac disease (CD) and the gluten-free diet (GFD) on the health-related quality of life (HRQoL) in children with CD in the United States using validated measures. We hypothesize that CD negatively impacts the child and caregivers' HRQoL. Methods Participants included children with a confirmed diagnosis of CD and their caregivers ( n = 246) seen in a CD multidisciplinary clinic. Caregivers completed the Pediatric Quality of Life (PedsQL) parent-proxy scale to report on their child’s HRQoL and the Family Impact Module (FIM), which assesses the impact of caring for a child with a chronic illness. Their children completed the age-appropriate PedsQL. PedsQL and FIM results were compared to published data for children with gastroenterological conditions and a healthy cohort using non-parametric tests. Results Children with CD reported significantly lower HRQoL than reports from healthy controls across all PedsQL domains ( P < 0.001, Cohen d = 0.8), and lower compared to children with other organic gastrointestinal conditions in Social Functioning ( P < 0.001, Cohen d = 0.5) and overall Psychosocial Functioning ( P < 0.001, Cohen d = 0.3) domains. Results from the caregiver’s report on their own HRQoL were significantly worse than that reported by historical controls in the domains of Communication ( P < 0.001, Cohen d = 0 .3) and Worry ( P < 0.001, Cohen d = 0.8), yet similar on all other domains. Conclusions In our population, CD is associated with low HRQoL scores for both children and their caregivers. Screening children and families for HRQoL can identify patients and families in need of additional support in this higher-risk population.