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

ABSTRACT

INTRODUCTION: Measuring health-related quality of life inpatients with celiac disease allows a comprehensive approach. OBJECTIVE: 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. METHODS: 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 patients and his/her parents standpoint. The questionnaire implementation was appraised using a strength and weakness form completed by patients, parents and gastroenterologists. RESULTS: 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