Research on type 1 diabetes often centers on its health impacts, but people with type 1 diabetes have long said that such research only paints half of the picture, and that there are many more hidden costs to life with the condition. For example, the physical impact of nighttime hypoglycemia may be measurable in a clinical trial, but less quantifiable are the sleepless nights and missed days at work that can result from a late-night low.

Researchers with T1D Exchange Patient-Centered Research and Eli Lilly and Company set out to help people with type 1 diabetes and their caregivers share their views on the daily burdens of life with type 1 diabetes. In research featured in 2019 at the American Diabetes Association Scientific Sessions in San Francisco, the researchers found that sleep loss and financial hardship represented two of the biggest daily challenges to life with type 1 diabetes, outside of blood sugar management.

For the study, researchers held six focus groups of 31 people who either had type 1 diabetes or  were caregivers of minors with type 1 diabetes. Participants were asked how the chronic disease impacts or disrupts their daily lives, and their responses were thematically analyzed by the researchers.

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What they found is that sleep deprivation, due to continuous glucose monitor alarms and blood glucose swings, was the most reported daily hurdle to life with type 1 diabetes. The participants also reported a heavy financial toll to life with type 1 diabetes, due to the cost of supplies, missed work days, and missed opportunities.
Allyson Hughes, PhD, a researcher with the T1D Exchange Patient-Centered Research team, said it’s important for research to truly reflect the total impact of life with type 1 diabetes, and not just the physical impact of blood sugar swings.

“Real world research showing the daily impact of type 1 diabetes is necessary so that we can tailor support for people with type 1 diabetes,” said Dr. Hughes. “As a community, we have to realize that there is much more to diabetes than insulin therapy. Our research shows that it impacts driving, work productivity, school attendance, and many other important activities.”

In the future, the researchers plan to further study how to best support people with type 1 diabetes and their caregivers as they manage these daily hurdles to managing the condition.

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