Advanced new technology in diabetes care may very well be the best thing to happen to patients since the discovery of insulin. That’s hard to debate.
But now, about 15 years after the first CGM (continuous glucose monitor) came to market, concerns are emerging about whether some people are becoming too dependent on modern diabetes tech tools.
That is, while CGM generally improves lives, many users panic if these tools or their backend systems experience a glitch. And many providers are worried that the healthcare system may be falling short on helping them know what to do if a device fails or is not otherwise available.
The challenge may be two-fold: Those newer to diabetes who adopt technology early may not get the training or experience needed to confidently handle glucose management with “traditional” methods, sans technology. Additionally, the constant stream of information new tech brings may be leading some — particularly parents caring for a child with type 1 diabetes (T1D) — to feel insecure and even panicked without it.
The so-called “Great 2019 Dexcom outage of New Year’s Eve” exposed some of this. When the Share feature of the Dexcom went down, some parents in particular flooded Facebook support pages with angst, bringing children home from parties or other activities, and even suggesting that they may not send their child to school and may stay up all night watching their child while the monitoring function was down.
And that, some say, could be leading to technology making life with diabetes more stressful for some people instead of less.
How and when technology is introduced into the life of a family new to diabetes varies. Many endocrine practices give a kind of “warm-up time” to adjust to learning about traditional glucose monitoring and insulin dosing using shots or a pen. But an increasing number are moving toward introducing pump and CGM technology directly at diagnosis.
For parents, in particular the social media-savvy, the draw to technology is often immediately powerful.
Theoretically, that’s a good choice, and is the way most pictured technology would be offered once available, says Jill Weissberg-Benchell, Ph.D., professor of psychiatry and behavioral medicine at Northwestern University Feinberg School of Medicine, who treats children with diabetes at the Ann and Robert H. Lurie Children’s Hospital of Chicago.
“My hope was that people were going to be able to use the [CGM] predictive algorithm and the information to look at patterns and figure things out from the start,” she tells DiabetesMine.
That would help the clinician hone in on the newly diagnosed person’s needs and also help the parents or person with diabetes (PWDs) learn as they go along.
But there’s one thing she and her team didn’t account for: Human nature.
Some PWDs and their caregivers seemed to become entranced by the immediate and constant stream of numbers provided by a CGM, as well as the up and down arrows and the alarms. They quickly became so reliant on these features that the idea of going without them felt like walking a tightrope without a net.
It’s easy to understand once you look at a CGM and listen to the alarms: seeing two arrows up or down indicating a rapid rise or drop in glucose can be extremely scary. This is followed up with an alarm that sounds like a fire engine or a baby’s cry. Naturally, someone newer to diabetes could embrace a feeling of being frightening unsafe without these notifications.
Add to that the power of social media — people seeing others posting claims that their child stays between 80 and 100 mg/dL glucose levels most times, and others posting about situations they claim could have been deadly without technology on board. This creates a perfect storm of a feeling of acute dependency on the tools, and the fear without them.
But as helpful as CGM can be,
Dr. Stephen Ponder a pediatric endocrinologist with Baylor Scott and White Healthcare in Temple, Texas, has been treating children with diabetes for decades and has had T1D himself for more than 50 years.
To him, the draw toward technology for parents, in particular, is understandable.
“It all comes back to how diabetes comes into the lives of any of us,” he says. “It’s a shotgun wedding.”
He describes the usual setting: “Mom is in tears, dad is beside himself and staring into space. They feel guilty; they feel terrified. They view diabetes as an obligation of what they now have to do — own the diabetes. And tools to make that not only seems easier but also better for their child.”
Dr. William Tamborlane, chief of pediatric endocrinology at Yale in Connecticut, who helped pioneer both CGM and pump technology at Yale University over the years, is also keenly aware of how difficult the first days — and months — are for families.
“It’s like walking along and a pile of bricks hits you,” he says of diagnosis.
“You need a little time to get over that,” he adds. “It’s taken me a while to figure this out, but the first 6 months are a good time to get used to… the shots and all that, and in time you think ‘this ain’t so bad after all.’”
Before that, he says, in some cases, “A CGM may be overkill. They think it will be less, but it’s more.”
Weissberg-Benchell observes that often when providers see a newly diagnosed family, “They are sleep-deprived, terrified, and don’t quite understand all this.”
“You have the mom who thinks every time they see a number over 180 it’s an emergency. It takes time to help someone learn that… this is not true,” she says.
It’s hard, she adds, for many parents to understand that diabetes, as of now, is not a “seek a perfect score” game across the board.
“People are not taught that 70 percent [of time in range] is the magic number,” she says, but they should be.
Particularly with Type A people, she says, “That can feel like ‘That’s a C-minus! I’ve never gotten a C!’ They need time and support to understand what is okay.”
The other important thing for families (and all PWDs) is to know the basics of how to monitor glucose and calculate insulin doses the “old-fashioned way,” without a CGM or pump so that they can fall back on those methods when the tech is not available. Learning that can take a lot of clinician time, something insurance does not always allow.
Which brings up the question: Should there be a required waiting time before adding technology to life with diabetes?
Waiting can be painful for some parents, particularly those linked to social media. But Tamborlane says education can help parents understand why a wait might be a smart idea that would not endanger their child in any way.
“The truth is, our kids and our families do really well even with the basics,” he says.
An innovator and pioneer in diabetes tech, Tamborlane is all about weaving it into diabetes life. But a warm-up time using basics (meter, insulin, pens, or shots), he says, can give parents time to grieve, adapt, learn and gain some confidence before amping up their focus on data.
“The problem with early CGM adoption is you get a lot of data that you don’t quite understand completely yet. That can be overwhelming for people,” he says.
Online and in support groups, parents often are encouraged by other parents to demand the technology right away, a common well-intentioned occurrence.
Roxana Soetebeer in New Brunswick, Canada, remembers that feeling. Shortly after her son was diagnosed, she turned to social media for information and looked around at others in real life she saw with diabetes and saw one thing: technology is a must. But her child’s endocrinology team wanted to wait a bit.
That made her mad.
“I read this thing online about overnight lows and how dangerous they are. So I was getting up and almost staying up all night because of that. I thought holding us back [from technology] was unfair, even cruel,” she says.
Now, years later, she realizes that for her family, it was the right decision on behalf of the medical team.
“It taught us the ropes,” she says. “We learned it all — the carb counting on our own, the shots, the treating lows. And now, when things go wrong? We’re comfortable. It’s not a big deal.”
Another thing happened as well, she adds. She gained confidence that her son was going to be okay.
“The more we experienced this [with the basics] the more laid back I got,” she says.
“At first I thought, ‘These people [the endo team] are nuts. How am I ever going to sleep?’” she remembered.
“But now, I can,” she says. Seven years later, her now 18-year-old uses technology, but when he wants a break or devices don’t function, they shift to no tech without fear.
Most experts believe that in time, we will have technology that’s relatively foolproof, and this issue may fade away.
But for now, practitioners want to figure out how to help all patients, and particularly families of T1D kids, embrace the beauty of technology with less angst.
Weissberg-Benchell points out that it is important not to “blame” PWDs or parents who may be challenged with doing well without technology.
It very well may come down to a lack of education time with providers, something that’s a challenge in the diabetes and healthcare world across the board.
“I lay the blame on the really busy clinicians,” she says, pointing out that they are rushed due to a lack of resources and insurance allowances for patient education overall.
To help tech work well from the start, she says, there needs to be solid and ongoing training, both to help patients and parents know what is real and what is perceived danger, and to help them adapt to managing diabetes with confidence when the tech is not available.
Dr. Jennifer Sherr is a Yale Medicine pediatric endocrinologist specializing in diabetes care, as well as a PWD diagnosed with T1D herself in 1987.
She also worries about the stress that tech introduced right at diagnosis can bring parents.
“It’s already just as if the world has ended with the diagnosis,” she says, something anyone can understand.
“Then you add in seeing all those post-prandial numbers and it’s like, ‘Oh my gosh.’ It leads people to believe they always have to be watching for highs and lows,” she says.
She personally participated in JDRF’s early CGM trials, and, she says, while she was told she did not need to look at it constantly, “I could not stop pushing that button and looking.”
That urge, she says, made her understand that someone who may not know you can be fine without viewing the data constantly would panic without the chance to see it.
Today, she tries to coach parents to not look at the CGM all day and to be able to feel fine when they cannot.
Her hope? “It’s not going to be that we can set up a standard for everyone,” she says, pointing out that humans are unique. “But we can take the time to help look at and adapt to how seeing that data is impacting a life.”
“With appropriate education and expectations, and with scheduled breaks as you go along, it can be done,” she says.
Ultimately, the technology introduced well does take away some stress, “but providers are still negotiating how to initiate it early and not overwhelm the families,” Weissberg-Benchell says.
She suggests that if you are spending more than 45 minutes in a 24-hour period (on a non-sickness, regular day) looking at the CGM, “It’s too much.”
Diabetes mom Soetebeer also advises fellow D-parents to source your information carefully.
“I see one person saying something that scares another person and then it just keeps going and going,” she says. “Find the right group that does not spike your anxiety, and talk to your (medical team) when you think there’s something that worries you.”
Another sign that you’re overdoing it: If your teen or older child does not want to use a CGM for a bit, or Share at all, and you refuse to allow it.
“It has to be a collaborative conversation. And if a kid says ‘no way,’ well, in the end, who’s diabetes is it? Who has the agency? Who has control? At some point a parent has to just step back and take a break from that,” she says.
When it comes to jumping on tech right at diagnosis, these sources agree that waiting can help.
First, it shows parents that “We’re not looking for perfection. Perfection and diabetes do not coexist,” Weissberg-Benchell asserts.
It also gives parents a chance to “take a deep breath and see that it’s going to be okay,” she says.