Rising diabetic retinopathy rates in youth signal potential public health crisis

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Diabetic retinopathy has tended to be regarded as a rare occurrence in young patients diagnosed with diabetes, but a recent paper details the growing rates of the disease in young people as a looming “potentially unappreciated public health catastrophe.”

An editorial in JAMA Ophthalmology, coauthored by Julie M. Rosenthal, MD, MS, from the University of Michigan Department of Ophthalmology and Visual Sciences and Kellogg Eye Center, pointed to data from 2 recent studies, including the Treatment Options for Type 2 Diabetes in Adolescents and Youth study and the SEARCH for Diabetes in Youth study.¹

“Diabetic retinopathy in young people is more common than we originally thought,” Rosenthal said in a University of Michigan news release. “So we need to take action by screening for it and intervening when we are able.”

Diabetic retinopathy occurs when high blood sugar damages tiny blood vessels and nerves in the retina, the structure at the back of the eye that acts like the sensor in a digital camera. It can result in vision loss that can be permanent and blinding.²

According to the University of Michigan news release, the most effective way to reduce the risk of diabetic retinopathy, according to experts, is to effectively manage the patient’s diabetes.

“In youth-onset Type 1 or Type 2 diabetes, we used to think it was rare to have retinopathy, but we’re finding out more and more that’s just not the case,” Rosenthal explained. “These two major studies found that after just 12 or 13 years of having diabetes, at least 50% of people had some amount of retinopathy, which is unexpectedly and unacceptably high.”

Rosenthal and her co-authors, retina specialist Jennifer K. Sun, MD, MPH, of Harvard, and pediatric endocrinologist Risa M. Wolf, MD, wrote in the paper that among participants in the studies who have Type 2 diabetes, the SEARCH and TODAY studies combined found that 49% to 55% had diabetic retinopathy after having diabetes for only about 12 to 13 years.²

In the SEARCH study, 52% of youths with type 1 diabetes had DR. For participants with type 2 diabetes, at a mean 7.5 years after diagnosis, the standardized prevalence of DR was 31%, increasing to 55.7% at a mean 12.4 years after diagnosis.¹

This was a surprise to investigators, as earlier data from one of the studies at 7 years after diagnosis only showed a rate of 4% to 13%.

Even though much of that retinopathy isn’t immediately threatening to vision, Rosenthal added, “that’s way more than we ever thought before, and given the increasing number of people who have diabetes, and especially with the prevalence of Type 2 diabetes going up, this is something we really need to pay attention to as ophthalmologists and as pediatric endocrinologists.”

Patients should remain vigilant

Rosenthal acknowledged that it can be a challenge to maintain control of diabetes – especially during the years when diabetic retinopathy can begin taking a toll on the vision of young adult patients.²

Moreover, for many patients, life is changing and events such as establishing their own homes, going off to college, starting a new job, or even transitioning from a pediatric endocrinologist to an adult doctor can all get in the way of closely monitoring a dangerous, progressive disease.

Rosenthal pointed out that diabetes is not an easy disease to live with because it impacts every part of a person’s life.

“When your friends aren’t having to deal with this, when you want to be living your life like a normal 18-, 20-, or 22-year-old, it can be really tough to get to your screening exams and keep good control of the disease,” she said.

Rosenethal added that researchers are worried that the disparities that are already present are going to widen if action is not taken.

“We need to make sure people are able to see their doctors and find better ways to get the treatment and the screening that they need,” she said.

That said, it’s important to both control the illness and know whether retinopathy may be progressing.

“While we think that control over blood sugar is a big factor in preventing retinopathy, we know it’s not the only one,” Rosenthal said.

Early screenings and detection can allow ophthalmologists to intervene during the earliest stages of diabetic retinopathy, even before patients have lost vision, suffered a retinal detachment or have had a lot of bleeding in the back of the eye. Rosenthal noted that that early intervention can lead to treatments that may prevent those things from happening and permanently affecting a patient’s vision at such a young age.²

Black, Hispanic youths disproportionately affected

While the incidence of both types of diabetes in youths has risen over the past 2 decades, the greatest increase has been among Black and Hispanic youths, a trend that’s projected to continue in coming years.

Diagnoses of Type 1 diabetes are projected to increase 65%, while Type 2 diagnoses may shoot up more than 600%, according to the paper.¹

Studies also indicate that racial and ethnic minority groups bear a heavier burden of diabetic retinopathy than their white peers.

“We’re very concerned that the disparities that are already present are going to widen if we don’t take action,” Rosenthal said. “We need to make sure people are able to see their doctors and find better ways to get the treatment and the screening that they need.”

Improved screening methods lead to better outcomes

The traditional methods of screening for diabetic retinopathy include examining the retina or taking a picture of the back of the eye to check for changes including bleeding, swelling, tiny aneurisms or patches of the retina that aren’t getting great blood flow.²

In recent years, physicians have started to view diabetic retinopathy as more of a problem affecting a “neurovascular unit” of nerves and blood vessels working together.

“We haven’t been looking at the neurologic part of retinopathy,” Rosenthal pointed out, by using tests like contrast sensitivity – for example – trying to see a letter that’s getting closer to the same color as the background.

“Is there something happening in the retina before we’re even seeing the retinopathy that could be affecting these young people?” she asked.

According to the University of Michigan news release, recent studies in adult patients have highlighted changes in how the retina works that ultimately may come before retinopathy is visible on exam or photographs.

Rosenthal further noted she would like to see more and better screening done in ways that make it easier for patients to stay on top of their eye health.

“We need to take screening to where patients already are—at their pediatric endocrinologists’ office or primary care physician, so they don’t have to make an extra trip to the eye doctor,” she explained.

Rosenthal also noted that the young patients and their parents are faced with a number of hurdles to clear when the child is diagnosed with retinopathy, and this could help check one item off their list.

“Many programs such as this are already underway for adults,” she said.

While current treatment options are better today than they were even 10 or 15 years ago, Rosenthal concluded that these treatments remain more reactive than preventative. In the future, Rosenthal said she hopes to have effective treatments that can act at earlier stages of the disease.²

References

1. Rosenthal JM, Sun JK, Wolf RM. Diabetic Retinopathy in Youths—A Potentially Unappreciated Public Health Catastrophe. JAMA Ophthalmol. Published online October 3, 2024. Accessed October 10, 2024. doi:10.1001/jamaophthalmol.2024.387

2. Diabetic retinopathy is being diagnosed more in younger patients. Michiganmedicine.org. Published October 9, 2024. Accessed October 10, 2024. https://www.michiganmedicine.org/health-lab/diabetic-retinopathy-being-diagnosed-more-younger-patients?amp