Josefa Barrio1, Enriqueta Román, MaLuz Cilleruelo, Manuela Márquez, Ma Luisa Mearin, Cristina Fernández. 1. *Departaments of Pediatrics, Hospital Universitario de Fuenlabrada †Departaments of Pediatrics, Hospital Universitario Puerta Hierro ‡Asociación de Celíacos de Madrid, Madrid, Spain §Department of Pediatrics, Leiden University Medical Center, Leiden, The Netherlands ||Epidemiology, Hospital Universitario Clínico, Madrid, Spain.
Abstract
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.
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.
Authors: Josefa Barrio; Maria Luz Cilleruelo; Enriqueta Román; Cristina Fernández Journal: Health Qual Life Outcomes Date: 2020-07-25 Impact factor: 3.186
Authors: Jonas F Ludvigsson; Carolina Ciacci; Peter Hr Green; Katri Kaukinen; Ilma R Korponay-Szabo; Kalle Kurppa; Joseph A Murray; Knut Erik Aslaksen Lundin; Markku J Maki; Alina Popp; Norelle R Reilly; Alfonso Rodriguez-Herrera; David S Sanders; Detlef Schuppan; Sarah Sleet; Juha Taavela; Kristin Voorhees; Marjorie M Walker; Daniel A Leffler Journal: Gut Date: 2018-02-13 Impact factor: 23.059