Preferences on how to measure and discuss health related quality of life within integrated care for children with obesity.

BACKGROUND: Childhood obesity can affect physical as well as psychosocial wellbeing. Therefore, childhood obesity care aims to improve all dimensions of health related quality of life (HRQoL). HRQoL can be measured with the generic questionnaire PedsQL4.0 and the weight-specific IWQOL-Kids. In the Netherlands, HRQoL assessment is conducted by the coordinating professional (CP). The aim of this qualitative study was to examine how and when to implement the measurement and discussion of HRQoL using the PedsQL4.0 and IWQOL-Kids within the integrated care for children with obesity in the Netherlands. Semi-structured interviews were conducted with fourteen CPs, in which the following was discussed: a) familiarity and attributions with regard to the assessment of HRQoL; b) wishes and needs with regard to the usage of the questionnaires; c) its practical incorporation. RESULTS: Interviews revealed that most CPs gained insight into the HRQoL by talking with families. One CP used the PedsQL4.0, the remaining CPs were unfamiliar with the two questionnaires. Even though some barriers, for instance a lack of time, might hinder the implementation of the PedsQL4.0 and IWQOL-Kids, all participants think the usage of either one or both questionnaires would have additional value to the support and care for children with obesity. There was no consensus about the questionnaire of preference. CONCLUSIONS: When the right preconditions are met, HRQoL questionnaires have the potential to support CPs in improving the care for children with obesity, tailored to each individual child.

Youth With Type 1 Diabetes Taking Responsibility for Self-Management: The Importance of Executive Functioning in Achieving Glycemic Control: Results From the Longitudinal DINO Study.

OBJECTIVE: Successful self-management of type 1 diabetes requires cognitive skills such as executive functioning (EF). In the transition to adolescence, youth take over responsibility for diabetes management. We set out to test: 1) the association between EF and glycemic control over time and 2) whether this association was moderated by: a) youth, shared, or parent responsibility for diabetes management and b) youth's age. RESEARCH DESIGN AND METHODS: Within the Diabetes IN DevelOpment study (DINO), parents of youth with type 1 diabetes (8-15 years at baseline; N = 174) completed a yearly assessment over 4 years. Glycemic control (HbA1c) was derived from hospital charts. Youth's EF was measured using the Behavior Rating Inventory of Executive Functioning (BRIEF)-parent report. The Diabetes Family Responsibility Questionnaire (DFRQ)-parent report was used to assess diabetes responsibility (youth, shared, and parent). Linear generalized estimating equations were used to analyze data including youth's sex, age, and age of diabetes onset as covariates. RESULTS: Relatively more EF problems are significantly associated with higher HbA1c over time (ß = 0.190; P = 0.002). More EF problems in combination with less youth responsibility (ß = 0.501; P = 0.048) or more parental responsibility (ß = -0.767; P = 0.006) are significantly associated with better glycemic control over time. Only age significantly moderates the relationship among EF problems, shared responsibility, and glycemic control (ß = -0.024; P = 0.019). CONCLUSIONS: Poorer EF is associated with worse glycemic control over time, and this association is moderated by responsibility for diabetes management tasks. This points to the importance of EF when youth take over responsibility for diabetes management in order to achieve glycemic control.

Parental Diabetes Behaviors and Distress Are Related to Glycemic Control in Youth with Type 1 Diabetes: Longitudinal Data from the DINO Study.

OBJECTIVE: To evaluate (1) the longitudinal relationship between parental well-being and glycemic control in youth with type 1 diabetes and (2) if youth's problem behavior, diabetes parenting behavior, and parental diabetes-distress influence this relationship. RESEARCH DESIGN AND METHODS: Parents of youth 8-15 yrs (at baseline) (N = 174) participating in the DINO study completed questionnaires at three time waves (1 yr interval). Using generalized estimating equations, the relationship between parental well-being (WHO-5) and youth's HbA1c was examined. Second, relationships between WHO-5, Strength and Difficulties Questionnaire (SDQ), Diabetes Family Behavior Checklist (DFBC), Problem Areas In Diabetes-Parent Revised (PAID-Pr) scores, and HbA1c were analyzed. RESULTS: Low well-being was reported by 32% of parents. No relationship was found between parents' WHO-5 scores and youth's HbA1c (ß = -0.052, p = 0.650). WHO-5 related to SDQ (ß = -0.219, p < 0.01), DFBC unsupportive scale (ß = -0.174, p < 0.01), and PAID-Pr (ß = -0.666, p < 0.01). Both DFBC scales (supportive ß = -0.259, p = 0.01; unsupportive ß = 0.383, p = 0.017), PAID-Pr (ß = 0.276, p < 0.01), and SDQ (ß = 0.424, p < 0.01) related to HbA1c. CONCLUSIONS: Over time, reduced parental well-being relates to increased problem behavior in youth, unsupportive parenting, and parental distress, which negatively associate with HbA1c. More unsupportive diabetes parenting and distress relate to youth's problem behavior.

Low Self-Confidence and Diabetes Mismanagement in Youth with Type 1 Diabetes Mediate the Relationship between Behavioral Problems and Elevated HbA1c.

INTRODUCTION: Previous studies indicated an association between behavior problems (internalizing, externalizing) and glycemic control (HbA1c) in youth with type 1 diabetes (T1D). The aim of this study is to examine if this association is mediated by self-confidence and mismanagement of diabetes. METHODS: Problem behavior was assessed with the Strengths and Difficulties Questionnaire. Mediating variables were assessed using the Confidence in Diabetes Self-Care-Youth and Diabetes Mismanagement Questionnaire. HbA1c was derived from hospital charts. Bootstrap mediation analysis for multiple mediation was utilized. RESULTS: 88 youths with T1D, age 11-15 y, participated. The relation between both overall problem behavior and externalizing behavior problems and HbA1c was mediated through confidence in diabetes self-care and mismanagement (a 1 b 1 + a 2 b 2 path; point estimate = 0.50 BCa CI 95% 0.25-0.85; a 1 b 1 + a 2 b 2 path; point estimate = 0.73 BCa CI 95% 0.36-1.25). CONCLUSIONS: Increased problem behavior in youth with T1D is associated with elevated HbA1c and mediated by low self-confidence and diabetes mismanagement. Screening for problem behavior and mismanagement and assisting young patients in building confidence seem indicated to optimize glycemic control.

Diabetes IN develOpment (DINO): the bio-psychosocial, family functioning and parental well-being of youth with type 1 diabetes: a longitudinal cohort study design.

BACKGROUND: Strict glycemic control during adolescence decreases the risk of developing complications later in life, even if this level of control is not maintained afterwards. However, the majority of adolescents with type 1 diabetes (T1D) are in poor control and so far medical or psychological interventions have shown limited success. Adolescence is characterized by major biological, psychosocial, cognitive and parent-child relationship changes and the complex interaction between these developmental trajectories, and its impact on health outcomes is still poorly understood. A specific topic of interest in this context is the timing of diagnosis. The longitudinal study DINO (Diabetes IN develOpment) aims to examine: 1) If and how the onset of T1D before vs. during puberty results in different outcomes of glycemic control, self-management, psychological functioning and diabetes-related quality of life. 2) The timing of onset of disturbed eating behavior, its risk factors and its prospective course in relation to glycemic and psychological consequences. 3) If and how the onset of T1D before vs. during puberty results in different family functioning and parental well-being. 4) If and how the cognitive development of youth with T1D relates to glycemic control and diabetes self-management. METHODS/DESIGN: DINO, a longitudinal multi-center cohort study is conducted in youth with T1D in the age range 8-15 years at baseline. Participants will be divided into two subgroups: pre-pubertal and pubertal. Both groups will be followed for 3 years with assessments based on a bio-psychosocial model of diabetes, scheduled at baseline, 12 months, 24 months and 36 months examining the biological, psychosocial -including disturbed eating behaviors- and cognitive development, family functioning and parental well-being. DISCUSSION: A better understanding of how the different trajectories affect one another will help to gain insight in the protective and risk factors for glycemic outcomes and in who needs which support at what moment in time. First results are expected in 2016.