Patients with Type 1 diabetes cite negative interactions with providers as significant barrier to care

Experts recommend the use of continuous glucose monitors as the gold standard for managing Type 1 diabetes. Yet many adult patients, particularly those with lower socioeconomic status and from underrepresented minority groups, are not receiving the technology or regular care from specialists known as endocrinologists.

A new study from University of Florida and Stanford University researchers finds the most commonly cited reason patients with Type 1 diabetes don’t receive optimal care is negative interactions with endocrinologists.

“The feelings of shame, stigma and judgment people with Type 1 diabetes experience in clinical encounters creates a barrier for obtaining technologies and for receiving preventive care from an adult endocrinologist,” said lead author Ashby Walker, Ph.D., an assistant professor in the department of health services research, management and policy in the UF College of Public Health and Health Professions, part of UF Health, the university’s academic health center.

The study, which appears in the journal Diabetes Care, is one of the few to consider the perspectives of underserved communities in an effort to identify potential barriers to care, Walker said.

“We must be intentional about understanding the lived experiences of communities that face elevated health risks in order to develop meaningful interventions,” said Walker, the director for health equity initiatives at the UF Diabetes Institute. “Moreover, the impact of COVID-19 on underserved communities demonstrates the dire need to address longstanding systemic inequalities in health outcomes.”

For the study, researchers conducted 16 focus groups in Florida and California in 2018 and 2019 with 86 adults with Type 1 diabetes. In order to include people who have traditionally been underrepresented in research, investigators targeted individuals who had “no shows” at two or more consecutive endocrinology appointments, had been hospitalized in the past year for a serious complication known as diabetic ketoacidosis and had received primary care at a Federally Qualified Health Center, which provides care to underserved groups.

Participants noted system-level barriers to receiving continuous glucose monitors — small devices implanted under the skin that automatically measure blood sugar — such as financial coverage or navigating insurance company policies.

But the most pervasive barrier to care identified was participants’ communication with endocrinologists in face-to-face interactions. Several participants said they received discouraging statements from endocrinologists when they asked about receiving a continuous glucose monitor, including feedback that the patient had poor control over their disease or would not be able to handle the technology. Participants frequently described feeling demeaned, belittled and misunderstood as a person living with Type 1 diabetes.

“I feel like sometimes I don’t even want to go to the doctor because I’m getting a lecture,” a participant said. “I’m getting like in trouble. I feel like a little kid who’s going to the principal.”

Many participants said they had stopped going to endocrinology appointments because they did not feel it was improving their overall health.

“We hope these findings generate an awareness about the importance of cultivating positive provider-patient relationships and treating people with Type 1 diabetes with empathy and respect in clinical encounters,” Walker said. “These findings also point to the ripple effect of industry-driven rules surrounding what it takes to obtain technologies like continuous glucose monitors as these rules create barriers for providers as well as patients.”

Walker said the next step is to develop and evaluate multilayered interventions to address health disparities in Type 1 diabetes that include efforts focused on provider-level implicit bias.

“We must also train and recruit a richly diverse ‘next generation’ of endocrinologists and equip them with tools for addressing health disparities,” she said.

Media contact: Ken Garcia at kdgarcia@ufl.edu or 352-265-9408.