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A new research project in New York is tackling the emotional side of life with diabetes, with the goal of developing a treatment manual and billable model of care that could be used across the diabetes clinical community.

This project emerges among widespread recognition that the reality of living with diabetes, whether it’s insulin-dependent type 1 diabetes (T1D) or another type, can put a huge strain on people’s psyche.

Daily stress can come from frequent low blood sugars that steal our focus or derail plans, the fatigue and other effects of higher blood sugars, and the constant pressure to monitor our blood, adjust our medication doses, and manage our bodily functions in ways that people without this condition can barely imagine.

But that doesn’t necessarily mean a person rises to the level of “clinical depression,” the formal diagnosis that typically triggers access to medical treatment and insurance reimbursement for that care.

Far more common is the daily psychosocial effect known as “diabetes distress.” Unfortunately the medical community isn’t fully equipped to recognize, treat, or even get reimbursed for addressing these emotional health issues effectively.

That could change, if two diabetes researchers at Albert Einstein College of Medicine in New York have anything to say about it.

Dr. Shivani Agarwal and Dr. Jeffrey S. Gonzalez

Those researchers are endocrinologists Dr. Jeffrey S. Gonzalez, and Dr. Shivani Agarwal, who also serves as director of the Supporting Emerging Adults with Diabetes (SEAD) program at Montefiore Health System in Bronx, New York.

They received a 4-year grant from the JDRF in September for their research, which will use telemedicine to deliver cognitive behavioral therapy (CBT) to young adults with T1D to reduce diabetes-related distress.

CBT is a treatment approach that helps people recognize negative or unhelpful thought and behavior patterns, and begin to change them. Many experts now consider it to be the gold standard of psychotherapy.

What makes this research unique is that not many studies to date have specifically targeted diabetes distress, or the effect of CBT interventions on diabetes health outcomes.

For their study based in New York City, the researchers will recruit 150 young adults nationally between 18 and 30 years old to determine if telemedicine-delivered CBT has any significant impact on both diabetes distress and blood sugar management. Notably, they’ll use continuous glucose monitors (CGM) in this research to compare effects for those who use the technology versus those who don’t.

It’s also important that this study will focus recruitment efforts on young adults from Hispanic and Black backgrounds who may be primarily Spanish-speaking, to demonstrate how impactful this type of telemedicine approach can be for people with diabetes in underserved communities. This is a big point for Agarwal, who focuses some of her work on racial and ethnic disparities in diabetes care.

During this study, they plan to test out ready-for-practice care solutions that include:

  • assessments of diabetes distress and mood status
  • diabetes self-management behaviors paired with CGM use
  • daily surveys to determine what types of distress may be happening based on management

This study builds in part on 2013 research utilizing CBT to help people with type 2 diabetes with their disease management. That study included using electronic pill capsules to help patients improve their medication adherence, by recording how often they opened their pill bottles. The research showed that using that tool helped participants take their meds more regularly, and also check their blood sugars more often, based on fingerstick meter data downloads. It also showed improved A1C results, and importantly, reduced levels of diabetes distress, based on survey data.

“We took that experience… and we put together the current project, which aims to modify that CBT approach for young adults with T1D who are more at-risk for diabetes distress and mental health issues,” Gonzalez said.

In the end, he says their study goal is to develop a diabetes distress treatment manual that can be shared throughout the medical community. They also hope to establish a model for best practices that can be used for billing insurance, so healthcare professionals can get properly paid for their work in helping patients deal with emotional burdens of diabetes.

“Diabetes can be a stressful condition to live with, and there’s an emotional side to living with diabetes,” Gonzalez told DiabetesMine. “If you’re emotionally distressed and burned out by your diabetes, that doesn’t necessarily mean you have a psychiatric condition, or are clinically depressed.”

The study is estimated to run from November 2021 to August 2024, targeted at those 18 to 30 years old who’ve had T1D for at least 6 months and have a current A1C level between 8.5 and 14 percent. Anyone interested in more detail or participating in the study can check out the official link at

While diabetes care professionals and the medical community have worked to better embrace mental health and the psychosocial aspects of life with this condition in the past decade or so, the focus has mostly been on the more extreme cases of depression and anxiety. The more widespread impact of diabetes distress has only recently starting gaining more attention.

Pioneers in the field like Dr. Larry Fisher at University of California, San Francisco, and Dr. Bill Polonsky, founder of the Behavioral Diabetes Institute in San Diego, California, have shaped this field and fought for recognition of the everyday emotional aspects of diabetes life.

“We’ve been using the term ‘depression’ pretty loosely, from being descriptive as ‘I’m tired and depressed,’ to the more frequent diagnostic term… but we get them mixed up,” Fisher told DiabetesMine. “We’ve been working to make a distinction between diabetes distress and depression, since having some level of distress is just a reflection of someone struggling with a daily chronic condition. It’s expected, some more and some less.”

Fisher emphasizes that he and other researchers studying this are not denying that depression happens and that it’s important — just that it’s often not recognized correctly and too much of what we label “depression” is really descriptive and is actually a nonclinical-level disorder that’s far more common among people with diabetes.

“There is imprecision about the definition (of depression) in its general use and therefore imprecision about how it’s treated,” he said, explaining that his aim is to create practical solutions. “It’s not a matter of developing more scales and documents and all this other stuff, but clinically in your practice what are you going to do to intervene when you spot this emotional distress? How can we intervene in a practical way?”

Gonzalez agrees that there’s a distinction between depression and distress, and that common everyday emotional distress issues should be addressed as their own category.

He cites the American Diabetes Association’s position statement in 2016 that focused on psychosocial care in diabetes, which he credits as a great move but one that is almost “aspirational” because it doesn’t deal with the practical aspects of diagnosing and treating the everyday emotional issues people with diabetes encounter. It’s led to a “mental health checklist” used by many practitioners, that often doesn’t capture the more common frustrations and stresses people deal with.

“Maybe we’ve been chasing after the wrong problem, or at least not the only problem,” Gonzalez said. “The pendulum has swung too far, and there’s a correction in the pendulum happening right now. You have the phrase ‘if you break, it you buy it.’ But we shouldn’t have to have someone’s mental health be ‘broken’ before we buy into treating them. We want to make it easier to buy into that diagnosis of emotional distress that is the most common and impacting outcomes, without getting to the point of clinical depression.”

He compared it to a cancer diagnosis, where a positive mammogram result does not always indicate breast cancer is present, or how a prostate-specific antigen test showing high levels doesn’t necessarily indicate there’s prostate cancer. The same can be said for diabetes mental health, where the screenings are highly-inclusive to cast a wide net, while not everyone who indicates issues will actually have clinical depression.

While a clinical depression diagnosis is usually followed by referral to a mental health professional, or anti-depression medication prescriptions, there is currently little guidance around next steps for treating diabetes distress. This study hopes to change that.

“This is a unique opportunity to rigorously test a short-term behavioral health solution for diabetes distress that, if successful, can be widely disseminated,” Gonzalez said.