Most US adults with diabetes report social stigma
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More than 60% of adults with type 2 diabetes and nearly 80% of those with type 1 diabetes said they experience some form of diabetes-related social stigma, according to survey data.
In findings from a survey conducted by The Diabetes Research Company and presented at the International Conference on Advanced Technologies & Treatments for Diabetes, reported diabetes-related social stigma was common among respondents, especially when it came to diabetes device use. About 20% of those not using an insulin pump or continuous glucose monitoring device said social stigma had a moderate or significant negative impact on their decision to not use a device, and 63% of those who use an insulin pump and CGM said they experienced stigma related to their device.
“These findings really highlight that not only can we confirm there is a relationship between diabetes stigma and people’s willingness to use these devices, but it’s probably a more complex one than we were initially thinking,” Matthew Garza, BS, stigma program manager at the diaTribe Foundation in San Francisco, said during a presentation.
The Diabetes Research Company conducted an online survey of 1,543 people with diabetes in August 2022. DSAS-1 and DSAS-2 were used to assess type 1 and type 2 diabetes stigma. Technology use and technology-related stigma were self-reported. Researchers collected demographics and clinical characteristics.
The respondents included 595 adults with type 1 diabetes (mean age, 55 years; 71% women), 580 adults with insulin-treated type 2 diabetes (mean age, 64 years; 62% women) and 368 people with type 2 diabetes not prescribed insulin (mean age, 64 years; 63% women). Of the type 1 diabetes group, 42% used a CGM, 42% used a CGM and insulin pump, 4% used an insulin pump only and 12% used no device. Among those with insulin-treated type 2 diabetes, 38% used a CGM, 16% used a CGM and insulin pump, 3% used an insulin pump only and 43% used no device. Of the type 2 diabetes group not prescribed insulin, 29% used a CGM only and 71% used no device.
The majority of respondents, including 79% of those with type 1 diabetes, 70% of those with insulin-treated type 2 diabetes and 64% of those with noninsulin-treated type 2 diabetes, reported experiencing social stigma.
Among those who did not use a device, diabetes stigma had an impact on their decision to forgo technology. Of non-device users, 25% of those with type 1 diabetes, 22% of those with insulin-treated type 2 diabetes and 17% of adults with noninsulin-treated type 2 diabetes said stigma had a modest or significant negative impact on their willingness to use a device.
For device users, device-related diabetes stigma was common. At least one experience of device-related stigma was reported by 63% of adults using an insulin pump and CGM, 37% of those using a CGM only and 30% of adults using only an insulin pump. The most common reported stigma-related experience involved a device alert or alarm causing a problem or unwanted attention in public, with the second-most common experience involving people staring or pointing.
Garza said the findings open the door for more studies to examine why stigma is a barrier to device uptake for some people, what impacts stigma has beyond device use, and what strategies and interventions could help reduce the impact of stigma. Garza added that diabetes-related stigma is not just confined to the U.S., but affects people with diabetes from all nations.
“This is not just an issue that is impacting high-income countries; this is a global issue,” Garza said. “We believe that’s why this research has to continue and take on a global scale.”
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Garza M, et al. OP 088. Presented at: International Conference on Advanced Technologies & Treatments for Diabetes; Feb. 22-25, 2023; Berlin (hybrid meeting).
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