Introduction: The lifelong gluten-free diet (GFD) is the treatment of celiac disease (CD). Being a restrictive diet, it limits daily life and can impact on the health-related quality of life (HRQoL). Our objective was to assess HRQoL of celiac patients on a GFD, the concordance between patients - caregivers, and to compare the local results with international data.
Patients and method: Patients aged 8-18 years on a GFD for >6months (37 dyads) were evaluated. The "Celiac Disease Dutch Questionnaire" (CDDUX) was applied, which evaluates in two questionnaires (one applied to the child and another one to the caregiver/parent), three areas: i) having CD, ii) communication with others, and iii) the diet. Reliability, dimensionality, and internal consistency were assessed using the Cronbach coefficient.
Results: More than 50% of patients and caregivers reported "well/very well" on sub-scales "having CD" and "GFD"; "communication" showed high percentages of "bad/very bad". Although there were no significant differences in HRQoL (global and subscale) perceived by patients and caregivers, there were when analyzing the answers of caregivers, who assigned better scores to boys (p=0.022) and to patients maintaining a non-strict GFD (p=0.049). Concordance between patients and caregivers was 39.2%.
Discussion: HRQoL of the assessed celiac children was satisfactory, among the best repor ted in Latin America. "Having CD" and the need for a "GFD" have less influence on HRQoL than "communication" with others about the disease. The concordance found suggests that the caregivers' perception does not necessarily reflect what patients perceive.