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

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

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

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

Cost-effective biodiversity restoration with uncertain growth in forest habitat quality

This paper develops a dynamic model for cost-effective selection of sites for restoring biodiversity when habitat quality develops over time and is uncertain. A safety-first decision criterion is used for ensuring a minimum level of habitats, and this is formulated in a chance-constrained programming framework. The theoretical results show; (i) inclusion of quality growth reduces overall cost for achieving a future biodiversity target from relatively early establishment of habitats, but (ii) consideration of uncertainty in growth increases total cost and delays establishment, and (iii) cost-effective trading of habitat requires exchange rate between sites that varies over time. An empirical application to the red listed umbrella species - white-backed woodpecker - shows that the total cost of achieving habitat targets specified in the Swedish recovery plan is doubled if the target is to be achieved with high reliability, and that equilibrating price on a habitat trading market differs considerably between different quality growth combinations