OBJECTIVETo assess the psychometric properties of a short, new, self-administered questionnaire (17–19 items) for evaluating the adherence behavior of children and adolescents with type 1 diabetes and their caregivers. This instrument has separate versions depending on the means of insulin administration, i.e., continuous subcutaneous insulin infusion (Adherence in Diabetes Questionnaire [ADQ]-I), or conventional insulin injection (ADQ-C).RESEARCH DESIGN AND METHODSA total of 1,028 caregivers and 766 children and adolescents 2–17 years of age were recruited through the Danish Registry of Childhood Diabetes and completed the national web survey, including the ADQ and psychosocial measures of self-efficacy, parental support, family conflict, and aspects of diabetes-related quality of life. Blood samples were obtained for central HbA1c analysis. The psychometric properties of the ADQ were evaluated, and the association with glycemic control was assessed.RESULTSThere was good internal consistency for both the youth and caregiver reports and strong agreement between the caregiver and youth reports. Higher ADQ scores, indicating better adherence, were associated with better self-efficacy, more parental support, less diabetes-related conflict, and less experience with treatment barriers. Factor analysis supported maintaining the one-factor structure of the ADQ. Higher ADQ scores were associated with lower HbA1c levels.CONCLUSIONSThe ADQ showed good psychometric properties. Although the test-retest reliability and sensitivity to change of the instrument still need to be established, the ADQ appears to be a valuable tool for assessing adherence in families with children and adolescents with type 1 diabetes in both clinical and research settings.

ObjectiveTo assess the prevalence of psychological difficulties in Danish children and adolescents with type 1 diabetes using both child/adolescent and caregiver reports, and to investigate associations between these symptoms and metabolic control, adherence, and quality of life.Research Design and Method:A total of 786 children and adolescents (8–17 years) recruited through the Danish Registry of Childhood Diabetes completed subscales of the Beck's Youth Inventories (BYI-Y), while 910 caregivers completed the Strength and Difficulties Questionnaire (SDQ). The participants also completed questionnaires assessing adherence and quality of life. BYI-Y and SDQ responses were compared with results from normative samples.ResultsChildren with diabetes generally reported a lower level of symptoms of depression and anxiety, while older adolescents in most cases were comparable to the normative samples. However, the numbers of patients with elevated scores were similar to normative groups, especially regarding the proportion of participants with ‘Extremely elevated’ scores. Caregivers of children and adolescents with diabetes generally reported the prevalence of elevated scores on the SDQ to exceed the prevalence observed in the norm sample – particularly with regard to older boys. Both BYI-Y and SDQ responses were significantly correlated with HbA1c, adherence, and quality of life.ConclusionsThis study finds Danish children and adolescents with diabetes to report lower or comparable levels of emotional difficulties compared to norms, while caregiver reports are less positive. The results therefore support the value of a multi-informant approach to the assessment of symptoms of psychological difficulty in girls and boys with diabetes.

BackgroundWe assessed the associations between metabolic control and adherence and a broad range of adolescent and family characteristics (e.g., gender, family structure), treatment-related variables (e.g., disease duration, treatment modality), and psychosocial factors (e.g., symptoms of depression and anxiety, parental support, self-efficacy) in a nationwide study of Danish adolescents (age 12–17 years) with type 1 diabetes mellitus (T1DM).MethodsSixty-four percent of invited families participated by completing a survey and providing a blood sample. Two path models of associations between generic and diabetes-related family factors, adolescent self-efficacy, emotional difficulties, and metabolic control and adherence were tested, one for adolescents and one for caregivers. Demographic variables were included as covariates.ResultsBoth path models demonstrated a satisfying model fit. In both models, metabolic control was associated with adherence, age, and T1DM duration. In the adolescent model, metabolic control was also related to treatment modality, single-parent household, caregiver non-support, and anxiety, whereas in the caregiver model metabolic control was associated with family conflict and caregiver support. In both models, adherence was related to age, duration, treatment modality, family conflict, caregiver support, family functioning, and emotional difficulties of the adolescent. In the adolescent model, adherence was also related to adolescent self-efficacy, whereas in the caregiver model adherence was associated with adolescent gender and caregiver non-support and support. Adolescent self-efficacy, emotional well-being, and difficulties related to adolescent/caregiver interaction appeared to be particularly important, as indicated by their stronger association with adherence and/or metabolic control.ConclusionThe results highlight the value of applying a multi-informant approach to address the psychosocial well-being of adolescents with diabetes in a large national sample. Self-efficacy, emotional, and family-related difficulties are important aspects to address in both clinical care and future research regarding adolescents with T1DM.

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Background Type 1 diabetes (T1D) can have a negative effect on family functioning, which is associated with deterioration in metabolic control. Therefore, a valid tool for assessing family functioning is clinically relevant. We assessed the quality and validity of the Danish general functioning (GF) subscale of the family assessment device (FAD). Additionally, we investigated GF scores among adolescents with T1D and their parents and the relationship between family functioning and background variables, including metabolic control. Methods All Danish families with a child diagnosed with T1D (N = 1997) were invited to participate in a web‐based survey. In total, 616 adolescents (aged 12‐17 years) and 1035 parents (of children aged 2‐17 years) responded. The quality and validity of measurements made using the GF subscale were assessed using the Rasch model and graphical log‐linear Rasch models (GLLRMs). Differences among GF responses were also assessed using GLLRMs. The relationships between GF scores and background variables were examined by multivariate analyses. Results A dichotomized version of the GF subscale provided essentially valid measures of family functioning. Furthermore, the GF subscale measured family functioning most accurately in families with worse family functioning than in our population. To accurately characterize family functioning, it is important to take both parent's and adolescent's perceptions into account. Family functioning was associated with glycated hemoglobin (HbA1c) levels, and discrepancies in family functioning were associated with higher HbA1c levels. Conclusions A dichotomized GF subscale is useful for assessment of family functioning. Parent's and adolescent's scores should be kept separate. Family functioning is associated with HbA1c levels.