Parent-child discrepancies in health-related quality of life in pediatric celiac disease: a systematic review and meta-analysis.

To evaluate differences in health-related quality of life (HRQoL) between child self-reports and parent-proxy assessments in children and adolescents with celiac disease (CeD) using the CeD Dutch Questionnaire (CDDUX), and to describe disease-specific HRQoL patterns across the included populations. A systematic review and meta-analysis was conducted according to PRISMA guidelines. Studies assessing HRQoL in pediatric CeD using the CDDUX questionnaire were identified through PubMed, Scopus, Google Scholar, and Cochrane Library databases. Pooled analyses were performed using random-effects models and expressed as ratios of means (RoM). Twenty-one studies from 14 countries, including 2,453 children with CeD and 2,257 parents, were included. Children consistently reported better HRQoL than perceived by their parents, with self-reported scores 7% higher overall. Differences were observed across all domains, particularly for "Diet". Overall, CDDUX scores indicated neutral HRQoL. Across studies, domain scores followed a consistent hierarchical pattern, with "Having CD" showing the lowest scores and "Communication" the highest. Marked geographic differences emerged, with the highest HRQoL scores reported in South America and the lowest in the Middle East and North Africa.

conclusionChildren with CeD reported higher HRQoL than their parents perceived, although the clinical importance of the pooled difference remains uncertain. The emotional burden of living with CeD represents the most affected dimension of HRQoL, while communication-related aspects are relatively preserved. Geographic variation emerged, however should be interpreted cautiously because comparability across language versions and cultural settings was not established. WHAT IS KNOWN: • Generic health-related quality of life questionnaires may underestimate the psychosocial burden associated with celiac disease; parent and child perceptions of disease burden frequently differ. WHAT IS NEW: • Parents consistently report lower health-related quality of life scores than children themselves, particularly in the "Diet" domain, while the"Having celiac disease" domain represents the greatest psychosocial burden worldwide.