Improving Type 1 Diabetes Care and Management Through Novel Community- and Stakeholder-Focused Education, Intervention, and Outreach Programs

Successful management of type 1 diabetes (T1D) is not easy or straightforward. It requires taking insulin multiple times every day, following sugars, making changes in lifestyle and visiting the diabetes team every 3 months among other tasks. This is challenging both for the individual and for the families and through the years it has become clear that new initiatives are needed to provide support. 

The Division of Pediatric Endocrinology at UPMC Children's has been working to transform the paradigm of patient care and self-management of T1D by developing patient- and family-centric, and community-based outreach initiatives designed to support and educate the ecosystem of T1D – from the individual patients and families to the communities in which they reside.

In 2019, in partnership with Drs. Ken Nash and Justin Schreiber from UPMC Western Psychiatric Hospital, Radhika Muzumdar, MD, and Ingrid Libman, MD, PhD, launched a pilot program testing a high-fidelity wraparound model for children and families with T1D. The program was adapted from an evidence-based behavioral health wraparound program. Amy Nevin, MD, a pediatrician in the community with close links to UPMC Children's Hospital, joined the team shortly after the start, bringing her expertise in community health to this novel initiative. An advisory board of key stakeholders, including youth with T1D, parents of youth with T1D, providers and leaders from diabetes related organizations, provided invaluable advice that helped develop education materials to help new families on this journey or those that have been struggling to learn what’s important. In essence, the Type 1 Diabetes Wraparound Program (DWP) is designed to empower patients with T1D and their families to better self-manage their condition through a comprehensive, holistic, and patient-centric approach that extends into the community at large. The pilot program was funded through a generous donation by a western Pennsylvania family to the UPMC Children’s Hospital Foundation.

Participants in the pilot program were supported by a team consisting of a facilitator, and family support and youth support partners who have experience living with or caring for a child with T1D.

"The core of the program from the beginning," explains Dr. Nevin, "has been to connect children and families with others who have experienced and understand the T1D journey and its challenges. But it's also been about learning from children and families with T1D what they need to effectively grapple with this chronic illness, while at the same time connecting them with a support structure both inside and outside the home, beyond the hospital and into their community. Our patients and families have been our teachers and have contributed immensely to how the program functions, what experiences and resources we bring to bear, and how to take that education out into the community."

Apart from the initial successes and development of the DWP and the ongoing support from the UPMC Children's Hospital Foundation, there has been a steady stream of newly devised and implemented community-based partnerships and programs that work to support or influence some aspects of T1D management for children and families.

"The DWP has become a springboard from which we have launched other new community partnerships to support our families," says Dr. Libman. "Our Division has always had a robust interaction with national organizations and local community resources such as the ADA and JDRF, and our newer local endeavors bring us closer to the idea of caring for children and families experiencing T1D from a community or societal standpoint."

Taking Patient- and Family-Centric Diabetes Self-Care and Support to the Community Through Hands-On Support Projects and Educational Outreach

The wraparound team has led multiple new educational initiatives for children and families through community-based partnerships during the last two years.

To date, one of the signature programs has been a cooking class held at Phipps Conservatory for children and families – initially conducted in an online manner because of the COVID-19 pandemic but is now transitioning to in-person activities. 

"We partnered with several entities, including the Albert Schweitzer Urban Public Fellows Fellowship Program and local school volunteers to deliver free kits of groceries used in the online cooking classes to demonstrate how to prepare various kinds of healthy foods," says Dr. Nevin. "Good nutrition is crucial to T1D management, but it's not intuitive for some, while others may struggle with economic constraints and other issues. Our classes are about basic, fundamental information that can be applied throughout their life."

The Division has also led many other educational outreach efforts in the community. ADA and JDRF volunteers received training on how to better serve as support instruments for families in the DWP, while child protective case workers were educated on the fundamentals of T1D and type 2 diabetes to aid them in their work with vulnerable families and populations.

Educational materials for parents and children focused on a "Diabetes RoadMap," "The Top 10 Things I Wish I Knew" about diabetes earlier, training and information derived from conversations and research with actual families and children.

The team is also working to better support people of color or underrepresented minorities who too often suffer from health care disparities or socioeconomic factors that compound the challenges inherent in managing T1D.

Not all the efforts from the Division and its partners and volunteers have been focused on health care support and education. Some of it is about having fun and meeting new people, and learning from neighbors in the community at social events designed to bring together children and families experiencing T1D.

"As one of our advisory board mothers said, she has never met a child or adult with diabetes who didn't want to meet someone else with diabetes to make a connection, learn from, or support. That's why things such as an Ice-Skating Party we conducted together with the Pittsburgh Penguins Foundation, JDRF, and Phipps Conservatory in early 2022 are helpful. They allow families and children to make connections that we hope will help them long-term," says Dr. Nevin. 

"We are committed to providing all the necessary resources and support in the community to our patients with diabetes and their families," promises Dr. Muzumdar, chief of the Division of Endocrinology at UPMC Children’s Hospital of Pittsburgh. "We are engaging in partnerships with all the organizations in our area that share this goal."

Contact the UPMC Children’s Division of Pediatric Endocrinology at (412) 692-3294 to learn more about the Diabetes Wraparound Program and the recent community engagement and support initiatives developed by Drs. Nevin and Libman.