Type 1 diabetes (T1D) is a force to be reckoned with, every hour of every day. Managing one’s blood sugar is hard enough during the day, while trying to work, study, exercise or play. But when night falls, patients, parents and loved ones wage war over something most people take for granted: quality, uninterrupted sleep. Between various symptoms of high or low blood sugar (BG), the treatment of such events, lying awake waiting for BG to level off, and fears and anxiety over what happens next, not to mention all of those noisy alarms on insulin pumps and CGMs, it’s clear that getting a full night of sleep presents a huge challenge for those with type 1 diabetes.
Last month, the Wall Street Journal reported what many of us already know: that interrupted sleep is even more detrimental to overall mood and cognitive abilities like memory and focus, than a reduced period of sleep. The story was based on a recent study published in the journal Sleep by researchers from Johns Hopkins University School of Medicine.
You Told Glu!
This latest research supports our own Glu research, conducted last summer via survey to the Glu community. The sleep survey was a collaborative effort with Dr. Katharine Barnard, a health psychologist and managing director at BHR Limited and a visiting professor at Bournemouth University. Dr. Barnard and her colleagues provide expertise in translating clinical research into quality of life information.
What We Learned
Using the data we collected, Dr. Barnard published a paper earlier this month in the Journal of Diabetes Science, entitled Impact of Chronic Sleep Disturbance for People Living with T1 Diabetes. 450 people on our online type 1 community Glu participated in the survey, showing Dr. Barnard and our research team that, as expected, chronic sleep interruptions are extremely common in both T1D adults and parents of children with type 1 diabetes. Here are some statistics from this publication:
- 47% of people report waking up once per night or more than once per night on average.
- The most frequent cause of waking in the night for parents was blood glucose testing (34.9%), whereas the most common cause of sleep disturbance in adults with T1D was in response to a CGM alarm (37.5%).
- 93% of parents believed that waking during the night negatively impacted their usual daily functioning; 82.5% of adults with T1D agreed.
Free-text responses in the survey revealed that many respondents believe their chronic sleep interruptions have negatively affected many areas of their lives, including their work performance, family relationships, and overall happiness.
What Does It All Mean?
We recently sat down with Dr. Barnard to chat with her about these findings and the impact they may have on research and families dealing with sleep challenges as a result of type 1 diabetes.
What do you think is the most exciting part of this study?
There is an opportunity to address the pressing and unmet need of poor sleep in those with T1D, and parents of children with T1D. It’s very exciting to be working with Glu and the T1D Exchange to really understand patient priorities to address and identify solutions that will positively impact people’s lives.
Where do you see research in this area heading? What’s next in your research plans?
We’re looking at the use of devices, such as CGMs, to reduce nocturnal hypoglycemia and improve quality of life for patients and their families. The study very clearly shows that chronic sleep interruptions have a negative effect on overall quality of life, but also shows that the use of technology and devices can help in this regard. The challenge here is that many parents reported that their children have experienced diabetes-related stigma as a result of wearing such devices. Advances in the size and wear-ability of devices may enable children’s T1D management to become more discrete.
We will also be reaching out to Glu ambassadors in the future to help design studies that will support people with T1D and using technologies to the best effect.
What can people with T1D or parents do to improve sleep habits?
It’s important to remember that the risk of severe nocturnal hypoglycemia remains low, and yet the impact of chronic sleep disturbances is detrimental for many people. Balancing optimal glycemic control whilst also getting adequate sleep is a challenge we appreciate, but there are some modifiable risk factors that people can discuss with their healthcare team to help relieve the pressure and achieve that balance.
What Can Be Done?
Given this study and your own experience, what is one aspect of research that you believe could make a difference in sleep quality for T1D patients and families? What can your healthcare providers and other professionals do to help you achieve optimal glycemic control overnight?