Journal of pediatric gastroenterology and nutrition · 2016
Health-Related Quality of Life in Spanish Children With Coeliac Disease.
СтатьяПоддержка исследования: вне правительства СШАВалидационное исследованиеНазвание и аннотация: Перевод пока не подготовлен
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Barrio Josefa, Román Enriqueta, Cilleruelo MaLuz, Márquez Manuela, Mearin Ma Luisa, Fernández Cristina
Аннотация
OBJECTIVES: The aim of the study was to assess health-related quality of life (HRQOL) using the Coeliac Disease Dutch Questionnaire (CDDUX) in Spanish children with coeliac disease.
METHODS: The CDDUX was cross-culturally adapted according to international consensus guidelines. HRQOL was assessed in coeliac members of the Madrid Coeliac Association ages 8 to 18 years using the adapted CDDUX. Cronbach α coefficient was determined as a measure of intraquestionnaire reliability and intraclass correlation coefficients as a measure of reliability between scores awarded by children and parents. Demographic and clinical variables associated with HRQOL were also assessed.
RESULTS: A total of 1602 children of 3122 registered Madrid Coeliac Association members ages 8 to 18 years were invited to participate. The questionnaire was completed by 480 families (30%): 214 only by parents, 214 by parents and their children, and 52 only by children. Cronbach α coefficient for the total score for parents was 0.90, and for children 0.88 (0.75-0.90 by scales). Mean total (standard deviation [SD]) HRQOL scores in children and parents were 55.5 (SD 12.7) and 53.89 (SD 12.19), respectively, with no differences detected in paired comparisons between the 2 groups. Significantly worse HRQOL scores were recorded in children showing a nonclassical clinical presentation, in those not adhering to treatment and in those reporting difficulties in following the diet.
CONCLUSIONS: The CDDUX questionnaire emerged as reliable for use in Spanish children with celiac disease. Overall, both children and parents felt the disease had no substantial negative impacts on patient HRQOL.
METHODS: The CDDUX was cross-culturally adapted according to international consensus guidelines. HRQOL was assessed in coeliac members of the Madrid Coeliac Association ages 8 to 18 years using the adapted CDDUX. Cronbach α coefficient was determined as a measure of intraquestionnaire reliability and intraclass correlation coefficients as a measure of reliability between scores awarded by children and parents. Demographic and clinical variables associated with HRQOL were also assessed.
RESULTS: A total of 1602 children of 3122 registered Madrid Coeliac Association members ages 8 to 18 years were invited to participate. The questionnaire was completed by 480 families (30%): 214 only by parents, 214 by parents and their children, and 52 only by children. Cronbach α coefficient for the total score for parents was 0.90, and for children 0.88 (0.75-0.90 by scales). Mean total (standard deviation [SD]) HRQOL scores in children and parents were 55.5 (SD 12.7) and 53.89 (SD 12.19), respectively, with no differences detected in paired comparisons between the 2 groups. Significantly worse HRQOL scores were recorded in children showing a nonclassical clinical presentation, in those not adhering to treatment and in those reporting difficulties in following the diet.
CONCLUSIONS: The CDDUX questionnaire emerged as reliable for use in Spanish children with celiac disease. Overall, both children and parents felt the disease had no substantial negative impacts on patient HRQOL.