INDIANAPOLIS — With a $5 million grant from The Leona M. and Harry B. Helmsley Charitable Trust, an Indiana University-led team will develop and test interventions to help families with young children with type 1 diabetes better manage the disease.
The project, led by Linda A. DiMeglio, M.D., M.P.H., professor of pediatrics at the IU School of Medicine, will focus on barriers to the use of new diabetes management technologies, such as continuous glucose monitoring systems, in children younger than 8 years old.
The goal, Dr. DiMeglio said, is to make it easier for parents to help their children keep their blood sugar levels within recommended ranges and improve quality of life for families.
“We have known for a long time that low blood sugar levels are bad for the developing brain, but there’s evidence from recent studies that high blood sugar levels also affect brain development. So there’s a great need to work with families and caregivers of young children to get more of their blood sugars in range.” Dr. DiMeglio said.
About 1.25 million Americans have type 1 diabetes, which occurs when the body does not produce insulin that is needed to convert glucose into energy. Those with the disease must take insulin to keep blood sugars as close to normal as possible. Dangers of low blood sugar levels include seizure and coma. High blood sugar levels can also be life-threatening and over time can lead to chronic complications.
Managing type 1 diabetes in young children can be challenging, DiMeglio noted. The disease is affected by food intake and exercise, and young children have erratic eating and play behaviors. Additionally they often cannot easily report the symptoms that accompany low and high blood sugar levels and depend on their parents and other caregivers to manage their disease.
Continuous glucose monitoring systems use a sensor implanted under the skin and a receiver to monitor glucose levels. The devices can help parents spot trends and take steps to avoid high and low blood sugars in their children. Despite their benefits, it is estimated that fewer than 10 percent of very young children with type 1 diabetes are using such devices, and many who are using these devices do not have blood sugars in good control.
The first phase of the study, which is beginning now, includes Dr. DiMeglio’s research team at the IU School of Medicine and IU Health Riley Hospital for Children as well as researchers at Baylor University, the Joslin Diabetes Center in Boston, Yale University, the University of Pittsburgh and the JAEB Center for Health Research in Tampa. They will use web-based surveys and interviews with families to identify barriers to optimal care for young children and in particular those surrounding the use of continuous monitoring devices.
In the second phase, the research teams will lead with 17 other centers in conducting a randomized trial to test whether continuous monitoring device use combined with a behavioral intervention based on information gathered in the first phase can improve control of blood sugar levels.
“In some cases parents may not be concerned about high blood sugar levels because they feel any highs are better than any lows. Or there may be fears with enough giving insulin due to the ways the child eats or to how the child gets care when not with parents. We want to identify these and other care barriers and design ways to overcome them,” said Dr. DiMeglio.
About the Helmsley Charitable Trust
The Leona M. and Harry B. Helmsley Charitable Trust aspires to improve lives by supporting exceptional nonprofits and other mission-aligned organizations in health, selected place-based initiatives, and education and human services. Since 2008, when the Trust began its active grantmaking, it has committed more than $1.4 billion for a wide range of charitable purposes. The Helmsley Type 1 Diabetes Program is the largest private foundation funder of T1D in the nation focused on understanding the disease, developing better treatments and improving care and access. For more information, visit www.helmsleytrust.org.