Abstract
BackgroundWe aimed to compare the perception of health-related quality of life (HRQOL) and related factors in Spanish coeliac children and their parents, using two questionnaires, the generic KIDSCREEN-52 and the specific the Celiac Disease DUX (CDDUX), and to assess the correlation between them.MethodsCoeliac children, aged 8-18, who are members of the Madrid Coeliac Association (MCA) and their parents, answered the Spanish version of the CDDUX and KIDSCREEN-52 questionnaires via e-mail. CDDUX was answered by 266 children and 428 parents and KIDSCREEN-52 by 255 children and 387 parents. Linear regression models were fitted to evaluate the association of demographic and clinical factors with HRQOL scores. CDDUX scores were compared with the subjective perception of health status assessed by the first question of KIDSCREEN-52. The correlation between the questionnaires was analysed.ResultsWe found that the main factors that negatively affected HRQOL were having social or economic difficulties associated with following the diet and having transgression-related symptoms. The maximum correlation between the questionnaires was 0.309 and − 0.254 in parents and children respectively.ConclusionsAlthough there is a poor correlation between the two questionnaires, both agreed that the main concerns of the respondents were related to the social and economic difficulties of following the diet. It would be interesting to use both types of questionnaires in order to perform a more complete assessment of HRQOL in coeliac children.Trial registrationNot applicable.
Highlights
Coeliac disease (CD) is an immune-mediated, systemic disorder due to gluten ingestion in genetically susceptible individuals [1]
health-related quality of life (HRQOL) Mean total (SD) HRQOL Celiac Disease DUX (CDDUX) scores were 55. 5 (SD 12.7) and 53.89 (SD 12.19) in children and parents respectively, with no differences detected in paired comparisons between the two groups, except in the dimension “having coeliac disease”, in which parents scored significantly higher than children (p < 0.001). (Table 1 of supplemental digital content)
According to the multivariate analysis of our current study, we observed that the main factors related to having a worse HRQOL with both questionnaires were: having social and/or economic difficulties related to following the diet and having transgressionrelated symptoms
Summary
Coeliac disease (CD) is an immune-mediated, systemic disorder due to gluten ingestion in genetically susceptible individuals [1]. Generic questionnaires measure the daily life aspects of HRQOL in patients who have several conditions, whereas specific questionnaires focus on specific aspects related to the illness and its treatment [8]. The Coeliac Disease DUX (CDDUX) [11] was chosen because it is the first paediatric disease-specific HRQOL questionnaire, it was recently adapted into Spanish by our group [12] and is available in other languages [13,14,15]. We aimed to compare the perception of health-related quality of life (HRQOL) and related factors in Spanish coeliac children and their parents, using two questionnaires, the generic KIDSCREEN-52 and the specific the Celiac Disease DUX (CDDUX), and to assess the correlation between them
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