Jill Weissberg-Benchell

Adolescent Diabetes Management and Mismanagement

OBJECTIVE To document the existence and prevalence of adolescent-generated diabetes management techniques. RESEARCH DESIGN AND METHODS One hundred forty-four adolescents completed the confidential questionnaire developed for this study. Glycohemo-globin was also obtained for each individual. RESULTS Within the 10 days before their clinic visit, many adolescents admitted to engaging in various mismanagement behaviors, with 25% admitting to missing shots. Parents tend to underestimate adolescent mismanagement. Missing shots was significantly related to poor control (P < 0.01). Older adolescents engaged in more mismanagement than their younger cohorts (P < 0.001). The questionnaire factored into two subscales: blatant mismanagement and faking. CONCLUSIONS This study shows the importance of recognizing the prevalence of mismanagement among adolescents.

Transitioning From Pediatric to Adult Care A new approach to the post-adolescent young person with type 1 diabetes

Diabetes research and health care have traditionally been divided into two distinct areas for receiving medical care: pediatric and adult. We propose a fresh approach to providing care in which we consider the period of development after high school as a period of “emerging adulthood” for youth with diabetes. We argue that the traditional conceptualization of only two distinct groups of patients misses the unique personal needs of individuals immediately post–high school. We frame this discussion about the needs of these post–high school patients (∼18–30 years of age) within the context of a contemporary theory of post-adolescent development. With this developmental context in hand, we then review psychosocial research on youth with type 1 diabetes. Next we discuss current clinical perspectives and knowledge about the natural course of diabetes during these years. Armed with an understanding of development, psychosocial functioning, and overall health, we then consider the literature regarding transition programs for youth with chronic diseases—both diabetes and other illnesses. We conclude by presenting specific strategies and recommendations to help both pediatric and adult providers care for the transition needs of this vulnerable population of individuals with diabetes. Over the past century, traditional developmental psychology defined the time immediately after adolescence as the “young adult period” (3,4). In contrast, a leading contemporary developmental theorist (1,2) has argued that young adulthood does not begin until youth are in their late twenties or thirties and that the developmental stage between ∼l8 and 25 years defines a period called “emerging adulthood.” Recent cultural trends in America for young people in their twenties lead to delays in assuming adult roles with respect to marriage, parenting, and work. Arnett (2) suggests that todays young people “explore the possibilities available to them in love and work, and move gradually toward making enduring …

Generic and Diabetes-specific Parent–Child Behaviors and Quality of Life Among Youth with Type 1 Diabetes

OBJECTIVE To evaluate associations among parent-child behaviors and generic and diabetes-specific health-related quality of life (HRQOL) in a multi-site sample of youth with type 1 diabetes. METHOD One hundred and twenty-one youth and their primary caregivers completed measures of parent-child behaviors, child HRQOL, and participated in an observed family interaction task. RESULTS Diabetes-specific parent-child variables were associated significantly with both generic and diabetes-specific HRQOL above and beyond the contributions of demographic and generic parent-child variables, accounting for between 13% and 31% of the variance in HRQOL. Diabetes-specific family conflict and negative diabetes-specific family communication were associated with lower HRQOL. Collaborative parent involvement in diabetes care was associated with higher levels of HRQOL. CONCLUSIONS Interventions that target diabetes-specific family interactions will be beneficial to the quality of life of children with type 1 diabetes.

Pediatric Health-Related Quality of Life: Feasibility, Reliability and Validity of the PedsQL™ Transplant Module

The measurement properties of the newly developed Pediatric Quality of Life Inventory™ (PedsQL™) 3.0 Transplant Module in pediatric solid organ transplant recipients were evaluated. Participants included pediatric recipients of liver, kidney, heart and small bowel transplantation who were cared for at seven medical centers across the United States and their parents. Three hundred and thirty‐eight parents of children ages 2–18 and 274 children ages 5–18 completed both the PedsQL™ 4.0 Generic Core Scales and the Transplant Module. Findings suggest that child self‐report and parent proxy‐report scales on the Transplant Module demonstrated excellent reliability (total scale score for child self‐report α= 0.93; total scale score for parent proxy‐report α= 0.94). Transplant‐specific symptoms or problems were significantly correlated with lower generic HRQOL, supporting construct validity. Children with solid organ transplants and their parents reported statistically significant lower generic HRQOL than healthy children. Parent and child reports showed moderate to good agreement across the scales. In conclusion, the PedsQL™ Transplant Module demonstrated excellent initial feasibility, reliability and construct validity in pediatric patients with solid organ transplants.

Diabetes Resilience: A Model of Risk and Protection in Type 1 Diabetes

Declining diabetes management and control are common as children progress through adolescence, yet many youths with diabetes do remarkably well. Risk factors for poor diabetes outcomes are well-researched, but fewer data describe processes that lead to positive outcomes such as engaging in effective diabetes self-management, experiencing high quality of life, and achieving in-range glycemic control. Resilience theory posits that protective processes buffer the impact of risk factors on an individual’s development and functioning. We review recent conceptualizations of resilience theory in the context of type 1 diabetes management and control and present a theoretical model of pediatric diabetes resilience. Applications to clinical care and research include the development of preventive interventions to build or strengthen protective skills and processes related to diabetes and its management. The ultimate goal is to equip youths with diabetes and their families with the tools to promote both behavioral and health-related resilience in diabetes.

Diabetes-specific emotional distress among adolescents: Feasibility, reliability, and validity of the problem areas in diabetes-teen version

Weissberg‐Benchell J, Antisdel‐Lomaglio J. Diabetes‐specific emotional distress among adolescents: feasibility, reliability, and validity of the problem areas in diabetes‐teen version.

A multisite trial of a clinic-integrated intervention for promoting family management of pediatric type 1 diabetes: feasibility and design.

Abstract:  The feasibility of a family‐based clinic‐integrated behavioral intervention to improve family management of type 1 diabetes was evaluated. In each of four clinical sites, 30–32 families (a total of 122) were randomized to intervention or usual care comparison groups. The WE*CAN intervention, based on family problem‐solving methods, was delivered during three routine clinic visits by trained ‘Health Advisors’. Of eligible families across the four sites, 83% agreed to participate, of whom 96% completed the baseline, mid‐term, and postintervention assessments. Families participated in an average of 2.85 intervention sessions over an 8‐month period. The intervention was integrated into the clinic setting without impairing clinic flow and was implemented with fidelity and consistency across sites by trained non‐professionals. The findings provide evidence of the feasibility of conducting a multisite trial to evaluate the effects of a clinic‐integrated problem‐solving intervention to improve family management. Many lessons were learned that provide guidance for recruitment, measurement, and intervention for the larger clinical trial.

Dietary Behaviors Predict Glycemic Control in Youth With Type 1 Diabetes

OBJECTIVE—To investigate the association between dietary adherence and glycemic control among youth with type 1 diabetes. RESEARCH DESIGN AND METHODS—We conducted a cross-sectional analysis of 119 youth aged 9–14 years (mean ± SD 12.1 ± 1.6 years) with diabetes duration ≥1 year (5.4 ± 3.1 years). Dietary adherence was assessed using the Diabetes Self-Management Profile diet domain. Higher score defined greater dietary adherence. Glycemic control was determined by A1C. RESULTS—Dietary adherence score was inversely correlated with A1C (r = −0.36, P < 0.0001). In a multivariate model (R2 = 0.34, P < 0.0001), dietary adherence (P = 0.004), pump use (P = 0.03), and caregiver education (P = 0.01) were associated with A1C. A1C of youth in the lowest (9.0%) tertile of diet score was higher than A1C of youth in the middle (8.1%, P = 0.004) and upper (8.4%, P = 0.06) tertiles. Dietary adherence uniquely explained 8% of the variance in A1C in the model. CONCLUSIONS—Greater dietary adherence was associated with lower A1C among youth with type 1 diabetes.

Development and Validation of the Collaborative Parent Involvement Scale for Youths with Type 1 Diabetes

OBJECTIVE To develop and test a youth-report measure of collaborative parent involvement in type 1 diabetes management. METHODS Initial item development and testing were conducted with 81 youths; scale refinement and validation were conducted with 122 youths from four geographic regions. Descriptive statistics, Cronbachs alpha, and factor analyses were conducted to select items comprising the scale. Correlations with parenting style and parent diabetes responsibility were examined. Multiple regression analyses examining associations with quality of life, adherence, and glycemic control were conducted to assess concurrent validity. RESULTS The measure demonstrated strong internal consistency. It was modestly associated with parenting style, but not with parent responsibility for diabetes management. A consistent pattern of associations with quality of life and adherence provide support for the measures concurrent validity. CONCLUSIONS This brief youth-report measure of parent collaborative involvement assesses a unique dimension of parent involvement in diabetes management associated with important youth outcomes.

Preventing Poor Psychological and Health Outcomes in Pediatric Type 1 Diabetes

Youth with type 1 diabetes are at high risk for psychosocial morbidities. These include depression, disturbed eating behavior, family conflict, poor health-related quality of life, low self-efficacy, and difficulty with medical adherence and metabolic control. A number of prevention interventions have been studied in this group, with the overall goal of improving adaptation and coping skills. This paper reviews the current research aimed at preventing poor outcomes in youth with type 1 diabetes and recommends simple interventions that can be added to clinical encounters. Recommendations for future psychosocial prevention studies are also discussed.