title: Health-related quality of life in children and adolescents with celiac disease: from the perspectives of children and parents.
abstract: Aim. 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. Methods. 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. Results. 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. Conclusion. 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.
authors.affiliation: Division of Nursing Science, Department of Medical and Health Sciences, Faculty of Health Sciences, Linköping University, 581 85 Linköping, Sweden.
authors.forename: Ing-Marie
authors.initials: IM
authors.lastname: Byström
authors.forename: Elisabet
authors.initials: E
authors.lastname: Hollén
authors.forename: Karin
authors.initials: K
authors.lastname: Fälth-Magnusson
authors.forename: Annakarin
authors.initials: A
authors.lastname: Johansson