Diabetic Retinopathy Missed in Children With Diabetes

Among children with a diagnosis of diabetes, an estimated 1-in-4 cases of diabetic retinopathy may be going undetected for years, risking vision loss, based on current screening guidelines.

Written by Adam Marcus

In a study of more than 4,000 youth, roughly 20% of children under age 18 with type 1 diabetes (T1D), and 9% of those with the type 2 diabetes (T2D) developed diabetic retinopathy within 6 years of receiving an intial diagnosis of diabetes.1 This trend requires closer attention given that when left unaddressed, diabetic retinopathy can progress to permanent blindness.

The rise in cases of T2D among children has prompted a call for vision screening at the initial diagnosis of diabetes. The latest data support that approach,1 according to findings in Ophthalmology.

Robert Rapaport, MD, professor, and director of pediatric endocrinology and diabetes at the Icahn School of Medicine at Mount Sinai, in New York City, called the prevalence rates “really pretty remarkable and it underlines what we always do recommend—anyone with diabetes should have a formal eye exam.”

Need for Change in Screening Guidelines

The problem, it seems, may stem from a limitation in current guidelines from the leading professional societies, including the American Academy of Ophthalmology and the American Diabetic Association,2,3 which do not generally recommend screening for retinopathy in childhood.

“Our analysis shows that waiting 3 to 5 years after the initial [diagnosis of diabetes] to screen for diabetic retinopathy, as present guidelines advocate, would have delayed the diagnosis of ocular disease in 18% of patients by 3 years and 25% by 5 years,” reported the study authors.

“Data from numerous studies suggest that detecting diabetic retinopathy early results in enormous benefits,” Emily Y. Chew, MD, deputy director of epidemiology and clinical applications at the National Eye Institute in Washington, DC, wrote in an accompanying editorial.

“This is especially relevant for adolescents and young adults whose diabetic retinopathy would pose a high burden of disease simply because of the many more anticipated years of life and, potentially, because of life-long care,” she said.

Risk Factors for Retinopathy: Glucose Levels, Age, and Sex

Retinopathy appears to progress even more rapidly in children with T1D than those with T2D, and is closely linked to blood glucose levels. For every 1-point increase in HbA1c, the risk for retinopathy rose 20% for those with T1D and by 30% for those with type 2 diabetes,1 the researchers reported.

The risk of retinopathy rises with age at diagnosis of diabetes, climbing by 4.6% percent per year for children with T1D.

For children with T2D, being male more than doubled the risk of developing diabetic retinopathy, while coming from a household with a socioeconomic worth of at least $500,000 reduced the risk by more than 50% as compared with children whose parents fall into the lowest income range.

“I think it is very useful for pediatric endocrinologists to work closely with ophthalmologists and optometrists to ensure that youth with diabetes who are under their care get referred to eye care providers and undergo screening for diabetic retinopathy in a manner that is in accordance with national guidelines,” Joshua D Stein, MD, MS, the Edward T and Ellen K Dryer Career Development Professor of Ophthalmology and Visual Sciences, and senior study author, told EndocrineWeb.

Dr. Chew said the findings should prompt societies to review their screening guidelines–especially in light of the surge in diabetes among American youth. 

The study was conducted by eye specialists, and therefore involved a “somewhat skewed” population of patients–those already referred to an ophthalmologist for examination, said Dr. Rapaport. “The percentage of abnormal findings might be higher” than it would be among all youth with diabetes, for whom eye damage is rare, particular among children under the age of 10 or who have not reached puberty, he said.

“We do want [endocrinologists] to start screening right away, but if you do that before puberty, you are extremely unlikely to find anomalies,” Dr. Rapaport told EndocrineWeb. Even so, he added, “I think for young individuals with diabetes, erring on the side of caution is important.”

The retrospective study, lead by a team of researchers at the University of Michigan, in Ann Arbor, used data from a managed care network that included 2,240 youth with T1D, and another 1,768 with T2D. Based on billing records, 20.1% and 7.2% respectively, of the children developed diabetic retinopathy, over roughly 3 years of follow-up after an initial diagnosis of diabetes was made. 

William H. Herman, MD, MPH reports consulting for Kalvista, Novartis, Novo Nordisk, and the Janssen Research Foundation. No conflicting relationship exists for any other author.  

This data was originally presented at the Association for Research in Vision and Ophthalmology Annual Meeting, May 4, 2015, Denver, CO.


1. Wang SY, Andrews CA, Herman WH, Gardner TW, Stein JD. Incidence and Risk Factors for Developing Diabetic Retinopathy among Youths with Type 1 or Type 2 Diabetes throughout the United States. Ophthalmology. 2017; 124(4):424-430.

2. American Diabetes Association. Diabetic Retinopathy. Diabetes Care. 2002;25(Supp1):s90-s93.

3. American Academy of Ophthalmology, Quality of Care Secretariat. Screening for Diabetic Retinopathy—2014. Available at: https://www.aao.org/clinical-statement/screening-diabetic-retinopathy. Accessed March 201, 2017.

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