Celiaki i barn och ungdomsåren : Livskvalitet ur barn- och föräldraperspektiv

Sammanfattning: Introduction: More and more children and young people get the diagnosis celiac disease established. Celiac is a life-long disease, which means that the child during the rest of its life has to be on a strictly gluten-free diet. There are few studies so far, which have examined how children having a life-long disease with food treatment and increasing prevalence really experience their health related quality of life (HRQoL). Purpose: The purpose of the study was to examine how children (8 – 18 years old) suffering from celiac valued their HRQoL and to illustrate as well whether the age of the child and its extent of disease when it was taken ill affected the child’s evaluation of HRQoL later in life. The purpose was also to compare whether the children’s parents valued the HRQoL of their children to the same extent as the children did. Method: 160 children, 54 boys and 102 girls were included in the study. Answers from 149 children/parents are being worked up in the result. DISABKIDS Chronic generic measure – DCGM – 12 in a short version for both children and parents is used to measure HRQoL during the last four weeks. Results: There was no difference between how boys and girls of different age experienced their total HRQoL during the latest four weeks. Nor were there any visible dissimilarities in the individual domains (mental, social and psychic health). The children who were diagnosed before the age of four being much affected by their disease at the time of the diagnosis valued their HRQoL higher than the children who were diagnosed after the age of four. The children who had been suffering from their disease during a longer period (>8, 7 years) showed a higher degree of HRQoL. The parental evaluation of their children’s HRQoL was lower than that of their own children, in the evaluation of the total HRQoL as well as in the individual domains (mental, social and psychic health). Conclusion: The test “DISABKIDS” shows that the majority of children suffering from celiac disease judged their HRQoL as very good during the last four weeks. Children suffering from celiac showed in this study a higher HRQoL than all the other groups of diagnosis having used DISABKIDS.