Health-Related Quality of Life in Children and Adolescents with Celiac Disease: From the Perspectives of Children and Parents

Abstract

<jats:p><jats:italic>Aim</jats:italic>. To examine how celiac children and adolescents on gluten-free diet valued their health-related quality of life, and if age and severity of the disease at onset affected the children’s self-valuation later in life. We also assessed the parents’ valuation of their child’s quality of life.<jats:italic>Methods</jats:italic>. The DISABKIDS Chronic generic measure, short versions for both children and parents, was used on 160 families with celiac disease. A paediatric gastroenterologist classified manifestations of the disease at onset retrospectively.<jats:italic>Results</jats:italic>. Age or sex did not influence the outcome. Children diagnosed before the age of five scored higher than children diagnosed later. Children diagnosed more than eight years ago scored higher than more recently diagnosed children, and children who had the classical symptoms of the disease at onset scored higher than those who had atypical symptoms or were asymptomatic. The parents valuated their children’s quality of life as lower than the children did.<jats:italic>Conclusion</jats:italic>. Health-related quality of life in treated celiac children and adolescents was influenced by age at diagnosis, disease severity at onset, and years on gluten-free diet. The disagreement between child-parent valuations highlights the importance of letting the children themselves be heard about their perceived quality of life.</jats:p>

Quality of life in children with celiac disease: A paediatric cross-sectional study

“…In interpreting our results, we should also consider that questionnaires were filled in by parents for children younger than 8 years. A recent study showed that parents valued their children's QOL as lower than the CD children themselves would do [28]. Therefore we cannot exclude some degree of misreporting in our study.…”

Translation, cultural adaptation, and validation of the celiac disease DUX (CDDUX)

“…10,11 However, the use of the same tool in patients within a wide age range is debatable, as they face different situations and perform different social roles. 13 In the development of the original questionnaire through focal groups, only four adolescents participated in the study; this limitation is emphasized by the researchers.…”

Demographics, clinical features and treatment of pediatric celiac disease

“…The increased cost of the gluten-free products and mislabelling of food claimed to be gluten-free are obstacles that CD patients have to overcome and these factors may influence the compliance to the diet (Pietzak 2005, Mc Culloch 2014. Psychological stress was also described as an inconvenience affecting compliance, as friends and classmates could shun them because of their GFD (Byström 2012). …”

“…This might reflect an earlier diagnosis due to increased awareness of CD among physicians during the last years. A possible limitation when reporting severity of symptoms, might be the fact that parents tend to exaggerate when describing the health status of the off-springs while adolescents can underestimate or even hide their symptoms (Byström 2012, Weimer 2013). …”