Clinical Innovation: Improving Outcomes in Children With Type 1 Diabetes
March 25, 2019
The Division of Pediatric Endocrinology, Diabetes, and Metabolism at UPMC Children’s Hospital of Pittsburgh follows more than 2,000 children and youth with type 1 diabetes (T1D). Between 250 and 300 new cases are diagnosed every year.
These children and their families face numerous challenges that compromise adherence to treatment and their well-being. In 2018, the Division received funding for and began the process of implementation of a new pilot program to improve diabetes management and outcomes in high-risk children and adolescents who have T1D.
Dubbed the “Adapted Wraparound to Improve Type 1 Diabetes Management in Youth,” this pilot project is designed to test the adaptation of an evidence-based High Fidelity Wraparound (HFW) process initially developed and used in the behavioral health community to teach and empower patients and families to better self-manage their behavioral health conditions through a comprehensive, holistic, patient-centric approach.
UPMC Children’s is partnering with the Youth and Family Training Institute (YFTI) at UPMC Western Psychiatric Hospital to adapt and refine its HFW, developed for its behavioral health patients, for use in children and youth with T1D followed at UPMC Children’s Hospital.
The pilot project is co-directed by Ingrid Libman, MD, PhD, associate professor in the Division of Pediatric Endocrinology, Diabetes, and Metabolism and Justin W. Schreiber, DO, assistant professor of psychiatry and pediatrics in the Department of Psychiatry at the University of Pittsburgh School of Medicine. The HFW team also includes Amy Nevin, MD, who serves as a coach/supervisor helping to coordinate the project and oversee compliance with HFW processes in collaboration with Lauren Jones and her team from YFTI; facilitators who will work directly with families to develop individualized management plans; and youth with T1D and family peer support partners who can provide support, assistance, and mentorship to the entire family unit.
The management of T1D in children and adolescents continues to prove to be challenging for patients, families, and the providers who treat them. The reasons for this are well documented in the literature and are multifactorial, but stress and associated behavioral health issues are significant contributors to struggles with adherence and poor control. The implications of having diabetes extend far beyond the individual and the family, and they also extend well beyond good glucose control. In essence, T1D is a community disease for young patients and
their families. Schools must become involved and understand the needs of the individual.
Essentially anywhere the child spends time must be equipped to understand and deal with the needs of managing the condition. “Given that only about 21 percent of children and adolescents meet the American Diabetes Association (ADA) guidelines for HbA1c targets, and given that short- and long-term complications are associated with suboptimal control, it is clear that new models of care are critical to empowering youth and families to improve adherence, self-confidence, quality of life, and ultimately outcomes,” says Dr. Libman.
Psychosocial Aspects of T1D
Depression and anxiety are commonly associated with having T1D. The effects of these comorbidities derive from, and at the same time exacerbate, poor management in a kind of negative feedback loop.
“Depression and anxiety make it hard for children and families to control their diabetes, and these comorbidities make it difficult to engage in activities of daily living. In most of the current models of diabetes care, the psychosocial aspects are pushed to the periphery. Many times, individuals and families who need this kind of support the most can struggle to find it. Our model places special emphasis on managing this aspect of diabetes with the peer support staff being the primary foundation,” says Dr. Schreiber.
Pilot Project Details
The UPMC Children’s T1D HFW project is a two-year pilot that targets the intervention at youth between the ages of 12 and 15 years who have been diagnosed with T1D for at least two years. These youth also will have had a more than two-point change in their HbA1c levels during a six-month period, or two or more hospital admissions during a year related to their underlying diabetes.
“Our goal is to enroll 20 to 25 children and families in the pilot project during the first year and continuously monitor and collect data in a rigorous and standardized way throughout the intervention. This preliminary data, if we are successful in our efforts, will support the development of a much larger clinical trial in the future,” says Dr. Libman.
The process of enrollment will begin with the initial step of a comprehensive family evaluation to assess their needs for all aspects of care — medical, social, behavioral, financial, and the like — and where the challenges or barriers to successful management may lie.
“T1D is a highly heterogeneous disease requiring individualized plans of care that extend into virtually every area of a patient’s life. I do not think you can create a program or protocol for managing this condition that treats everyone in a similar manner. Diabetes is a pervasive disease, but its pervasiveness is highly variable,” says Dr. Schreiber.
Project Progress and Upcoming Milestones
The advisory board for the T1D HFW pilot has been established and consists of a multidisciplinary group of clinicians from UPMC Children’s and UPMC Western Psychiatric Hospital, along with patients with T1D, family members and members of community organizations essential in T1D management, such as insurers, primary care providers, and support agencies.
The implementation team currently is adapting the behavioral health HFW model for application to youth with T1D. At the same time, they are creating the necessary support, educational, and training materials that will be used by team members and enrolled patients.
This phase of the project will be completed by spring 2019, at which time patient and family enrollment into the pilot project will commence.
While the goal of this program is to address a high-risk population of patients with T1D to improve outcomes, reduce disease burdens, and limit adverse health-related events, the bigger picture speaks to how the program may be able to empower and train children and adolescents to successfully manage their condition as they transition into becoming independent adults responsible for their own decisions and health care needs. Instilling the behaviors and support networks that will be needed for successful T1D management early in life should allow more individuals to carry forward their successes into adulthood.