Investigators from the SEARCH for Diabetes in Youth Study reviewed critical lessons from two decades of surveillance and observational research into youth-onset diabetes during the Virtual 80th Scientific Sessions.

The session, Twenty Years of Pediatric Diabetes Surveillance—What Do We Know and Why it Matters—The SEARCH for Diabetes in Youth Study, was presented Monday, June 15, and can be viewed by registered meeting attendees at ADA2020.org through early September.

SEARCH, which is funded by the Centers for Disease Control and Prevention and the National Institute of Diabetes and Digestive and Kidney Diseases, is a national multi-center study with centers in California, Colorado, Ohio, South Carolina, and Washington.

Jean M. Lawrence, ScD, MPH, MSSA, Principal Investigator at SEARCH’s California center, said that between 2001 and 2017, all race/ethnicity groups saw significant increases in type 1 diabetes. And while non-Hispanic White youth continue to have the highest incidence and prevalence of type 1 diabetes, youths of color are developing the disease with increasing frequency. The same trend of increased prevalence across all race/ethnicity groups is also true for type 2 diabetes, except for Native American populations, she said.

Projections show that by 2050, almost 600,000 youth younger than 20 will have type 1 diabetes, a prevalence of 5.2/1,000, and more than 84,000 youth between the ages of 10 and 19 will have type 2 diabetes, a prevalence of .75/1,000.

Amy K. Mottl, MD, MPH, FASN, Co-Investigator at SEARCH’s Carolina center, said morbidity and mortality starts early in youth-onset diabetes. Socio-economic status, diabetes type, and race/ethnicity create significant disparities in morbidity and mortality, she added.

“While there’s clear susceptibility to diabetes from birth, as well as typology and clinical outcomes, the social, economic, and behavioral bases play an even greater role,” she said. “Structural racism and classism account for a majority of the macro-level socioeconomic phenomenon impacting the health outcomes of our patients and deserves greater attention.”

Katherine A. Sauder, PhD, Early Stage Investigator at SEARCH’s Colorado center, discussed SEARCH results that highlight barriers that youth and young adults with type 1 diabetes face when trying to achieve glycemic control. One notable barrier is food security—the availability of nutritionally adequate and safe food.

Dr. Sauder said youth with low or very low food security have a mean A1C level almost a full percentage point higher than those with high or even marginal food security, even after adjustments for socio-economic factors.

“SEARCH has identified social, behavioral, and psychological correlates that are linked to pediatric diabetes management, the number of which further demonstrate the complexity of this disease and the comprehensive support needed to manage it well,” Dr. Sauder said. “For children and adolescents who are still developing cognitively and emotionally, the burden is substantial. And it appears to get even harder as they transition through adolescence into young adulthood.”

Catherine Pihoker, MD, Principal Investigator at SEARCH’s Washington center, said about 80% of SEARCH participants reported experiencing at least one barrier to care, which include cost, access to a regular care provider, and quality of care.

Impaired access to care was associated with poorer outcomes. Study participants who reported not being able to spend enough time with care providers were three times as likely to have poor glycemic control, and those facing increased family conflict also had a higher likelihood of poor glycemic control regardless of the treatment regimen.

SEARCH also found that participants who stayed in pediatric care longer had better outcomes for both type 1 and type 2 diabetes.

“Keeping these young adults in pediatric care isn’t the solution, of course, so how do we better prepare for a successful transition?” Dr. Pihoker said.