title: Childhood diabetes in the Nordic countries: a comparison of quality registries.
abstract: In 2008 a Nordic collaboration was established between the quality registries in Denmark, Iceland, Norway, and Sweden to improve quality of care for children with diabetes. This study aimed to describe those registries and confirm that the registry variables are comparable. Selected variables were used to demonstrate outcome measurements. The organization of the registries and methodology are described. Cross-sectional data for patients between birth and 14.9 years with type 1 diabetes mellitus in 2009 (n = 6523) from 89 centers were analyzed. Variables were age, gender, and diabetic ketoacidosis at onset, together with age, gender, HbA1c, insulin regimen, and severe hypoglycemia at follow-up in 2009. All 4 registries use a standardized registration at the onset of diabetes and at follow-up, conducted at the local pediatric diabetes centers. Methods for measuring HbA1c varied as did methods of registration for factors such as hypoglycemia. No differences were found between the outcomes of the clinical variables at onset. Significant variations were found at follow-up for mean HbA1c, the proportion of children with HbA1c < 57 mmol/mol (NGSP/DCCT 7.4%), (range 15-31%), the proportion with insulin pumps (range 34-55%), and the numbers with severe hypoglycemia (range 5.6-8.3/100 patient years). In this large unselected population from 4 Nordic countries, a high proportion did not reach their treatment target, indicating a need to improve the quality of pediatric diabetes care. International collaboration is needed to develop and harmonize quality indicators and offers possibilities to study large geographic populations, identify problems, and share knowledge.
authors.affiliation: Division of Nursing Science, Department of Medical and Health Sciences, Linköping University, Linköping, Sweden Division of Paediatrics, Department of Clinical and Experimental Medicine, Linköping University, Linköping, Sweden lena.hanberger@lio.se.
authors.forename: Lena
authors.initials: L
authors.lastname: Hanberger
authors.affiliation: Department of Paediatrics, Aarhus, Aarhus University Hospital, Skejby, Denmark.
authors.forename: Niels
authors.initials: N
authors.lastname: Birkebaek
authors.affiliation: Children's Medical Center, Landspítali University Hospital and Faculty of Medicine, University of Iceland, Reykjavík, Iceland.
authors.forename: Ragnar
authors.initials: R
authors.lastname: Bjarnason
authors.affiliation: Woman and Children's Division, Department of Paediatric Medicine, Norwegian Childhood Diabetes Registry, Oslo University Hospital, Oslo, Norway.
authors.forename: Ann Kristin
authors.initials: AK
authors.lastname: Drivvoll
authors.affiliation: Department of Paediatrics, Herlev University Hospital, Herlev, Denmark.
authors.forename: Anders
authors.initials: A
authors.lastname: Johansen
authors.affiliation: Woman and Children's Division, Department of Paediatric Medicine, Norwegian Childhood Diabetes Registry, Oslo University Hospital, Oslo, Norway Woman and Children's Division, Department of Paediatric Medicine, Oslo University Hospital, Oslo, Norway.
authors.forename: Torild
authors.initials: T
authors.lastname: Skrivarhaug
authors.affiliation: Children's Medical Center, Landspítali University Hospital and Faculty of Medicine, University of Iceland, Reykjavík, Iceland.
authors.forename: Arni V
authors.initials: AV
authors.lastname: Thorsson
authors.affiliation: Division of Paediatrics, Department of Clinical and Experimental Medicine, Linköping University, Linköping, Sweden.
authors.forename: Ulf
authors.initials: U
authors.lastname: Samuelsson
mesh_terms: D000293:Adolescent; D000367:Age Factors; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D003922:Diabetes Mellitus, Type 1 / Q000453:epidemiology*; D005260:Female; D005500:Follow-Up Studies; D006442:Glycated Hemoglobin; D006801:Humans; D007003:Hypoglycemia / Q000453:epidemiology; D007004:Hypoglycemic Agents / Q000627:therapeutic use; D007223:Infant; D007231:Infant, Newborn; D007332:Insulin Infusion Systems / Q000706:statistics & numerical data; D007662:Ketosis / Q000453:epidemiology; D008297:Male; D011787:Quality of Health Care; D012042:Registries / Q000592:standards*; D012537:Scandinavian and Nordic Countries / Q000453:epidemiology; D012737:Sex Factors
chemical_list: D006442:Glycated Hemoglobin; D007004:Hypoglycemic Agents
keywords: Diabetes Mellitus Type 1; Quality of Health Care; Registries; glycosylated; hemoglobin A1c; pediatrics