title: Use of the national quality registry to monitor health-related quality of life of children with type 1 diabetes: a pilot study.
abstract: The management of diabetes is complicated, as treatment affects the everyday life of both children and their families. To enable optimal care for children with type 1 diabetes, it is important to highlight health-related quality of life (HrQoL) as well as medical outcomes to detect psychological problems that otherwise could be missed. The aim was to study HrQoL in children and adolescents with type 1 diabetes dependent on gender, age and co-morbidity and to study the consistency between children's self-reporting and parents' proxy reporting. The cross-sectional data were collected using the questionnaire DISABKIDS Chronic Generic Measure and the DISABKIDS diabetes module. Parents in the proxy report perceived their children's HrQoL to be lower than children themselves. Boys reported their HrQoL to be better than girls. Results show that living with an additional disease has an impact on the HrQoL, which is an important factor to consider in the quality registry. Assessing HrQoL on a routine basis may facilitate detection and discussion of HrQoL-related questions in the national quality registry.
authors: Jonkoping University, Sweden christina.peterson@hhj.hj.se.
authors: Christina
authors: C
authors: Petersson
authors: School of Health Science, Sweden.
authors: Karina
authors: K
authors: Huus
authors: University Hospital of Linkoping, Sweden.
authors: Ulf
authors: U
authors: Samuelsson
authors: University Hospital of Linkoping, Sweden.
authors: Lena
authors: L
authors: Hanberger
authors: Ryhov Hospital Jonkoping, Sweden.
authors: Karin
authors: K
authors: Akesson
mesh_terms: D000293:Adolescent; D000367:Age Factors; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D003922:Diabetes Mellitus, Type 1 / Q000523:psychology; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D010290:Parents; D010865:Pilot Projects; D011788:Quality of Life; D012042:Registries; D057566:Self Report; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Assessment; diabetes; paediatric; statistics