Deborah A. Butler

Family conflict, adherence, and glycaemic control in youth with short duration Type 1 diabetes.

Aims Behavioural support around diabetes management tasks is linked to glycaemic outcomes. In this study we investigated the relationship between diabetes‐related parental behaviours (conflict around and involvement in treatment tasks), adherence to blood glucose monitoring (BGM), and glycaemic control in youth with short duration Type 1 diabetes mellitus (DM).

Brief Screening Tool for Disordered Eating in Diabetes: Internal consistency and external validity in a contemporary sample of pediatric patients with type 1 diabetes

OBJECTIVE To update and validate a diabetes-specific screening tool for disordered eating (the Diabetes Eating Problem Survey [DEPS]) in contemporary youth with type 1 diabetes. RESEARCH DESIGN AND METHODS A total of 112 youth with type 1 diabetes, ages 13–19 years, completed the DEPS. Higher scores on the DEPS indicate more disordered eating behaviors. Youth and their parents also completed additional surveys to examine diabetes-specific family conflict, negative affect related to blood glucose monitoring, youth quality of life, and diabetes burden. Clinicians provided data on height, weight, A1C, and insulin dosing. The DEPS was revised into a shorter, updated measure and validated. RESULTS The revised 16-item DEPS (DEPS-R) displayed excellent internal consistency (Cronbachs α = 0.86). Construct validity was demonstrated by positive correlations with zBMI (P = 0.01), A1C (P = 0.001), diabetes-specific family conflict (P < 0.005), youth negative affect around blood glucose monitoring (P = 0.001), parental diabetes-specific burden (P = 0.0005), and negative correlations with frequency of blood glucose monitoring (P = 0.03) and quality of life (P ≤ 0.002). External validity was confirmed against clinician report of insulin restriction. CONCLUSIONS The DEPS-R is a 16-item diabetes-specific self-report measure of disordered eating that can be completed in <10 min. It demonstrated excellent internal consistency, construct validity, and external validity in this contemporary sample of youth with type 1 diabetes. Future studies should focus on using the DEPS-R to identify high-risk populations for prevention of and early intervention for disordered eating behaviors.

The impact of modifiable family factors on glycemic control among youth with type 1 diabetes.

Objective:  To identify modifiable family factors impacting glycemic control in youth with type 1 diabetes (T1DM) beyond the anticipated physical, developmental, and behavioral issues associated with adolescence.

The impact of physiological, therapeutic and psychosocial variables on glycemic control in youth with type 1 diabetes mellitus.

OBJECTIVE Intensive management of type 1 diabetes mellitus (DM1) in youth is challenging. We evaluated the relative impact of variables related to DM1 among groups of pre/early pubertal, midpubertal and postpubertal youths with DM1. METHODS In this cross-sectional study of 153 youth with DM1, we ascertained Tanner stage, insulin dose and delivery modality (CSII vs MDI), daily blood glucose monitoring (BGM) frequency, and most recent hemoglobin A1c (HbA1c). We collected questionnaires from patients and their parents on diabetes-specific family conflict and family involvement in diabetes management tasks. We assessed predictors of glycemic control according to pubertal status. RESULTS Insulin doses increased between pre/ early puberty and midpuberty (p <0.0001); daily BGM frequency (p = 0.02) and family involvement for DM management (p <0.001) were lowest in the postpubertal group. HbA1c was similar among all three puberty groups (8.4+/-1.4). Lower levels of child-reported DM-specific family conflict, more frequent BGM, and CSII use were significantly associated with lower HbA1c (R2 = 0.20, p <0.001). CONCLUSION Although glycemic control was not significantly worse in midpubertal and post-pubertal patients, family involvement for DM management and adherence to BGM were lower in late adolescence. Interventions to optimize glycemic control may include minimizing DM-specific conflict, increasing BGM frequency, and implementing CSII use.

Family‐based psychoeducation and care ambassador intervention to improve glycemic control in youth with type 1 diabetes: a randomized trial

Youth with type 1 diabetes frequently do not achieve glycemic targets. We aimed to improve glycemic control with a Care Ambassador (CA) and family‐focused psychoeducational intervention.

Re-examining a measure of diabetes-related burden in parents of young people with Type 1 diabetes: the Problem Areas in Diabetes Survey – Parent Revised version (PAID-PR)

Diabet. Med. 29, 526–530 (2012)

Perceived Benefits, Barriers, and Strategies of Family Meals among Children with Type 1 Diabetes Mellitus and Their Parents: Focus- Group Findings

Dietary management of type 1 diabetes mellitus has become much less restrictive and more flexible in recent years due to contemporary insulin regimens, which may afford families of children with type 1 diabetes mellitus greater ease in sharing family meals. Although these treatment advancements might facilitate family meals, overall demands of diabetes management can influence familys perceived or actual ability to do so. Youths with type 1 diabetes mellitus (ages 8 to 20 years) and parents participated in separate focus groups. Thirty-five youths with type 1 diabetes mellitus (mean age=15.1+/-3.6 years) and their parents participated in 21 focus groups (12 youth groups, nine parent groups). Although there was substantial variability in how often family meals occurred, both parents and youths consistently perceived family meals as valuable and enjoyable. The major barrier to family meals discussed by both youths and parents was busy schedules. Strategies for having family meals that were discussed by parents included shopping to ensure availability of the foods needed to prepare meals, planning, and cooking meals in advance, and using simplified cooking methods. These findings suggest that a family-focused approach to nutrition interventions in this population, as opposed to one targeting the child with diabetes only, can improve the chance for successful dietary change.

Youth-Perceived Burden of Type 1 Diabetes: Problem Areas in Diabetes Survey-Pediatric Version (PAID-Peds).

Background: Management of type 1 diabetes in childhood can be challenging and overwhelming. Despite availability of advanced treatments and new technologies, the burden has not decreased as current approaches to intensive therapy are not without need for patient involvement. This study aimed to design and validate a measure of youth-reported burden related to type 1 diabetes management. Method: A multidisciplinary pediatric diabetes team designed the survey, based on a previously validated parent measure of diabetes-related burden (PAID-PR); survey revisions and pilot testing followed. The 20-item PAID-Peds assesses burden over the past month. Youth with type 1 diabetes (N = 126, ages 8-17, intensively treated with insulin pump therapy or multiple daily injections) completed the new survey, along with other surveys; parents completed companion measures. Electronic medical records and blood glucose meter download provided other salient data. Results: The PAID-Peds displayed excellent internal consistency (α = .94) and acceptable test–retest reliability (intraclass correlation .66, P < .0001). The PAID-Peds correlated significantly with both youth and parent reports of diabetes-specific family conflict, negative affect around blood glucose monitoring, depressive symptomatology, trait anxiety, and quality of life. It was not correlated with demographic or clinical characteristics of the youth. Conclusions: This new measure, the PAID-Peds, of youth-reported burden related to type 1 diabetes may have clinical and research utility, particularly in the current era of emerging diabetes technologies that require ongoing patient input.

Validation of a contemporary adherence measure for children with Type 1 diabetes: the Diabetes Management Questionnaire

To evaluate the psychometric properties of the Diabetes Management Questionnaire, a brief, self‐report measure of adherence to contemporary diabetes management for young people with Type 1 diabetes and their caregivers.

Youth and Parent Measures of Self-Efficacy for Continuous Glucose Monitoring: Survey Psychometric Properties

BACKGROUND This study aimed to describe the development and psychometric evaluation of novel youth and parent measures of self-efficacy related to continuous glucose monitoring (CGM) in pediatric patients with type 1 diabetes. This evaluation also assessed the predictive validity of the CGM Self-Efficacy (CGM-SE) surveys on CGM use and hemoglobin A1c (HbA1c) levels. SUBJECTS AND METHODS Study participants included 120 youth with type 1 diabetes for ≥1 year enrolled in a 2-year randomized clinical trial comparing CGM use with and without the addition of a family-focused CGM behavioral intervention. Youth and parents completed the CGM-SE surveys at randomization after a 1-week run-in to assess CGM tolerability. Analyses of predictive validity excluded the intervention group and included 61 youth in the control group in order to assess CGM use and HbA1c outcomes 3 and 6 months after randomization. RESULTS At study entry, youth were 12.7±2.7 years old with a diabetes duration of 6.1±3.6 years and an HbA1c level of 8.0±0.8% (64±9 mmol/mol); blood glucose monitoring frequency was 6.8±2.4 times/day, and 84% received pump therapy. CGM-SE surveys had acceptable internal consistency (Cronbachs α=0.80 for youth and 0.82 for parents). Youth reporting higher baseline CGM self-efficacy (CGM-SE score of >80) had significantly greater CGM use and lower HbA1c level after 3 and 6 months compared with youth reporting lower baseline CGM self-efficacy (CGM-SE score of ≤80). CONCLUSIONS The CGM-SE surveys appear to have strong psychometric properties. CGM self-efficacy may offer an opportunity to assess the likelihood of CGM adherence and glycemic improvement in youth with type 1 diabetes in clinical and research settings.