Type 1 Diabetes Adult Diagnoses Are More Frequent Than Just About Anyone Realizes – Diabetes Daily

A new systematic review published in Diabetes Care has concluded that adult-onset type 1 diabetes is far more common than previously believed.

For generations, it was widely assumed that type 1 diabetes was overwhelmingly a disease of the young. The condition even used to be known as “juvenile diabetes,” a name that was eventually tossed aside because it was so impressively inaccurate.

The more data we get, the more we realize how many adults develop the disease, too. In the United States, for example, there are an estimated 37% more new cases of type 1 diabetes in adults than there are in children every year.

The new article, published in late March, analyzes 46 previous studies on the epidemiology of adult-onset type 1 diabetes, and includes data from 32 countries. In an attempt to widen the breadth of data, the authors also included so-called “gray literature,” surveys and registries generated by non-academic sources such as government health organizations.

The nation with the highest incidence of adult-onset type 1 diabetes was Sweden, where 30 adults out of 100,000 are diagnosed with the condition annually. For context, that’s an even higher rate than is found in children in most countries, according to a reference compiled by Beyond Type 1.

The new study was co-authored by lead investigator Dr. Jessica Harding of Emory University, in collaboration with many colleagues and organizations around the world. An Emory University news story gives some more context.

Here are some of the main takeaways:

  • At all ages and across the world, type 1 diabetes is more common in males than in females.
  • Adult-onset type 1 is most common in the Nordic countries, and least common in East Asia, at least among countries for which we have good data. It’s anybody’s guess whether that is due to genetic factors, environmental factors, or something else entirely.
  • Adults of all ages seem equally likely to develop type 1 diabetes. Although the condition does still develop most frequently in the young, after the age of 20 there are no obvious trends. Patients can be diagnosed with type 1 diabetes as young adults, as elders, and at any age in between. The risk of developing type 1 does not appear to decline as we get deeper into adulthood.
  • There’s not much evidence that rates of adult-onset diabetes are increasing globally. This is in marked contrast to children, where many studies have found that type 1 diabetes is becoming more and more common. (However, it’s fair to wonder if the data will change after the full scope of the Covid pandemic and its effect on diabetes development comes into view.)
  • There is simply not enough data on adults with type 1 diabetes—especially in the developing world. Relatively few studies assessed diabetes incidence in Africa, the Middle East, or South Asia, few enough that it is difficult to generalize about trends among the billions of people that live there.

Why It Matters

The old stereotype of type 1 diabetes as a condition of the young—and the far greater prevalence of type 2 diabetes—introduce biases that cause doctors to make mistakes. A 2019 survey found that nearly 40% of adults that were diagnosed with type 1 diabetes as adults were initially misdiagnosed. About three-quarters were told, incorrectly, that they had type 2 diabetes, while others were told they were suffering from infections or other unrelated health issues.

When new patients are incorrectly treated (or not treated at all) it leads to frustrations and danger, increasing the risk of short- and long-term complications, including deadly diabetic ketoacidosis (DKA). Many Diabetes Daily readers have experienced some of these misdiagnosis woes themselves. Check out our recent roundup of their stories: “Misdiagnosed with the Wrong Diabetes! Stories from Our Community.”

One can only imagine how much worse the misdiagnosis issue is in less affluent nations, where even properly diagnosed patients can have immense difficulties accessing the insulin and other supplies that they need to survive.

The new review also found that there is no international consensus on how to define adult-onset type 1 diabetes. The authors stated that “there is a pressing need to define, test, and compare diagnostic criteria in multiple high-quality studies to better distinguish T1D from T2D in adults so that we may better assess the true burden of T1D in adults.”

We can hope that a more complete understanding of the surprising frequency of adult-onset type 1 diabetes will help patients across the globe receive the proper diagnoses and care with all possible speed.


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Author: Mabel Freeman