Introduction: Health-related quality of life (HRQoL) examines how health impacts a person’s overall functioning. Although there are broad measures of HRQoL, celiac-specific questionnaires elucidate disease-specific factors that impact functioning. The Celiac Disease Life Inventory of Family Experiences (CDLIFE) is a new celiac-specific HRQoL measure for pediatric patients with CeD. This prospective cross-sectional study expanded the validity of the CDLIFE in broader clinical settings, as well as examined child and caregiver agreement.
Methods: Caregivers (n = 253) of pediatric patients (ages 2- 18 years) with a physician-confirmed CeD diagnosis seen between 2020 and 2025 at a pediatric hospital in the Western United States were emailed a link to complete the caregiver proxy- and child self-report forms of the CDLIFE, the Pediatric Quality of Life Inventory (PedsQL), and the Revised Children’s Anxiety and Depression Scale (RCADS). Spearman’s correlation coefficients were calculated to examine the relationships between CDLIFE, PedsQL, and RCADS.
Results: CDLIFE scores demonstrated moderate-to-strong positive correlations with PedsQL scores for both child self-reports (r = 0.522, p < 0.001) and caregiver-proxy reports (r = 0.480, p < 0.001). CDLIFE scores demonstrated moderate-to-strong negative correlations with RCADS total anxiety/depression scores for child self-reports (r = –0.459, p < 0.001) and caregiver-proxy reports (r = –0.478, p < 0.001). Inter-rater reliability between children and caregivers was good for CDLIFE (ICC = 0.754, 95% CI: 0.648 – 0.825; p < 0.001).
Conclusions: Consistent with previous findings, the CDLIFE demonstrated promising validity. Moreover, inter-rater reliability demonstrated promise for agreement between caregiver proxy- and child self-reports. The CDLIFE may be applicable in clinical and research settings to evaluate the impact of CeD on children.