Implementation of a health-related quality of life questionnaire for children and adolescents with celiac disease

Measuring health-related quality of life inpatients with celiac disease allows a comprehensive approach. To assess the implementation and sensitivity to change of the Argentine version of the CDDUX disease-specific questionnaire to measure health-related quality of life in children and adolescents. Descriptive, observational, longitudinal and prospective study. Participants were 8 to 18 year old children and adolescents with celiac disease, their parents or legal guardians and their gastroenterologists. The CDDUX questionnaire was used to assess health-related quality of life, and sensitivity to change was evaluated using the variation in the score obtained on two different occasions and a scale of change perception from the patient's and his/her parent's standpoint. The questionnaire implementation was appraised using a strength and weakness form completed by patients, parents and gastroenterologists. The first interview was conducted among 118 child/parent dyads who completed the CDDUX and recorded their experience; 102 completed the questionnaire on two occasions. Total scores were higher the second time (p = 0.009 and 0.003, respectively). There was consistency between the perception of change expressed by the child/adolescent and the father/ mother, and the difference in the CDDUX score obtained at different consultations (p < 0.001). Standardized effect size: 0.52 for children/adolescents, and 0.45 for parents. A 64% agreement was observed among the opinions of children/ adolescents and their parent'´ opinion (kappa 0.20), and a 51% agreement was found among them and their gastroenterologists (kappa 0.10) in terms of change between consultations (better, the same, or worse).Gastroenterologists also recorded their experience with the CDDUX. They agreed that it was satisfactory and useful. The CDDUX questionnaire demonstrated test-retest stability and sensitivity to change. Different opinions were obtained regarding change in children/adolescents health-related quality of life, with a better agreement among children/adolescents and their parents than among them and their physicians. The CDDUX questionnaire has been accepted by children/adolescents, their parents and gastroenterologists.