Associations between adolescent experiences, parent experiences and HbA1c: results following two surveys based on the Norwegian Childhood Diabetes Registry (NCDR)

ObjectiveThe aim of the current study was to determine the association between the experiences of adolescents and their parents with paediatric diabetes care at hospital outpatient departments and the association between these experiences and the Hemoglobin A1c (HbA1c) levels of adolescents.DesignCross-sectional survey.SettingPaediatric diabetes care at hospital outpatient departments in Norway.ParticipantsParents of all outpatients registered in the Norwegian Childhood Diabetes Registry and patients in the same registry aged 12–17 years.Intervention1399 parents participated in a national pilot survey and 335 patients aged 12–17 years from the four largest paediatric outpatient departments in Norway responded in another pilot study. 181 paired parental and patient questionnaires were analysed.Main outcome measuresThe correlations between single items, indicator scores and overall scores were explored, as was that between indicator scores and HbA1c levels.ResultsThere was a moderate but significant correlation between the responses of the patients and parents. For 40 of the 42 associations the correlations were significant, ranging from 0.16 to 0.42. A weak but significant negative correlation was found between the indicator scores of parents and the HbA1c levels of the adolescents. The strongest correlations were between HbA1c level and nurse contact and organisation, both with a correlation coefficient of 0.21 (p<0.01). There was no significant correlation between HbA1c level and patient indicator scores.ConclusionsThese results highlight the need to obtain information from both parents and adolescents, and indicate that the views of adolescents are not always mirrored by their parents. Three of the seven parent experience indicators were significantly related to the HbA1c levels of adolescents, but replication in future research with larger sample sizes is warranted.

Norwegian Childhood Diabetes Registry: Childhood onset diabetes in Norway 1973-2012

The Norwegian Childhood Diabetes Registry (NCDR) is a prospective, population-based, nationwide registry which systematically register all incident cases of childhood diabetes, and systematically monitors the outcome of diabetes care in children and adolescents. NCDR includes data on childhood onset diabetes since 1973, and diabetes care outcome since 2001. NCDR was founded with the following objectives: To improve the diagnostics, classifications and treatment of childhood-onset diabetes, surveillance of incidence of diabetes in children and adolescents, surveillance of quality of diabetes care in Norwegian paediatric departments, and to stimulate to research in diabetes.