The medical and financial cost of type 1 diabetes is well-documented in research, media, and even in government policy. According to figures from the American Diabetes Association, the monetary cost of the disease totals $327 billion annually.
Just as important, but perhaps less broadly publicized, is the daily mental and logistical toll it exacts on patients and families. Diabetes affects more than simply blood sugars – it also disrupts sleep, work schedules, social life, and more.
Researchers from T1D Exchange presented their findings on these impacts at the 45th annual conference for the International Society for Pediatric and Adolescent Diabetes, hosted here in Boston from October 30 to November 2. The study drew its conclusions from our T1D Exchange Glu community itself, comprising five online focus groups and one in-person gathering in San Diego, CA of people with type 1 diabetes or caregivers for children with the condition.
“The impact of type 1 diabetes is much greater than healthcare costs,” said Jeoffrey Bispham, a research scientist at T1D Exchange. “The time that people with type 1 and caregivers dedicate, along with psychosocial factors associated with disease management are equally important ‘costs’ of diabetes. Understanding the day-to-day impact of type 1 diabetes can help us alleviate challenges that families and people with T1D face.”
Sleep, employment impacts caused by diabetes
For people with type 1 diabetes, the most dramatic impacts are seen on sleep, which the disease disrupts in a number of ways. Caregivers often reported setting alarms throughout the night to wake up and check their children’s blood sugars, affecting both their rest and that of the child. For people using technology such as insulin pumps and CGMs, the alerts of the devices themselves have proven to be an issue, waking their users regularly for highs, lows, and other conditions.
“There’s only been a couple of days in the past since she was in kindergarten that I’ve slept through the night,” one parent told the research team, “and that’s only been when she’s at diabetes camp.”
The focus groups were polled on the level of disruption they felt diabetes had on their sleep, with 0 being no impact and 10 being the highest level. Two separate groups of caregivers reported an average sleep disruption level of 8.5 and 10, respectively, while a mixed group of patients and caregivers reported an average level of 9.2.
Another critical issue reported by the focus groups was the effect of type 1 diabetes on employment opportunities and professional life. Especially for caregivers of children with type 1 diabetes, the constant demands of the disease and concern for their family’s well-being led many to cut back on work hours, shift to part-time and flexible schedules, or even stop working entirely.
One mother said of her previous career in payroll and accounting, “working an office job, they’re not flexible as far as coming in late or having to leave to run to the school or just stay home with a sick child. That just wasn’t feasible for me to stay there.”
The research conducted by T1D Exchange with the aid of our Glu focus groups has highlighted some of the most critical issues patients with type 1 diabetes face in their daily lives and careers. More work needs to be done on quantifying these impacts, assessing the differences across varied populations and social classes, and identifying pathways toward alleviating the challenges.
Want more type 1 diabetes-related news stories, and the chance to help type 1 diabetes research? Take a moment to join T1D Exchange Glu now by clicking here.