Children with celiac disease: Health-related quality of life and leisure participation

OBJECTIVE: We compared health-related quality-of-life (HRQOL) perceptions of children with celiac disease (CD) with those of their parents to determine whether their leisure participation differs from that of children without CD and whether relationships exist between leisure participation and HRQOL. METHOD: Children with CD and their parents completed a disease-specific HRQOL self-report questionnaire, the Celiac Disease DUX. These children and matched controls without CD completed the Children's Leisure Assessment Scale (CLASS). RESULTS: Parents perceived HRQOL significantly more negatively than did children. No significant group differences were found in leisure participation. However, specific CLASS food-related activities and HRQOL significantly correlated. CONCLUSION: Hearing the child's voice in addition to the parents' is important in determining the HRQOL of children with a chronic condition. Findings contribute to understanding of CD in the context of participation and well-being and can lead to development of occupational performance-based assessments and interventions for children with CD.