More Than Half of Patients with Vision-Threatening Condition Unaware They Have It

Ten-Year Study of 27,000 People with Diabetes Suggests Major Communication Gap Between Patients and Eye Care Providers

BOSTON – A serious complication of both type 1 and type 2 diabetes, diabetic retinopathy is a progressive eye disease characterized by damage to blood vessels in the retina, the light sensitive tissue lining the back of the eye. Regular eye examinations are one crucial factor in managing and preventing diabetic retinopathy; however, symptoms may not appear until after the time when intervention is most effective. Lack of awareness of the presence of diabetic retinopathy is a major contributor to lack of adherence to eye care for the prevention of vision-loss.

In a ten-year observational study, investigators at Joslin Diabetes Center assessed the self-reported awareness of the presence of diabetic retinopathy in 26,876 patients with diabetes who underwent retinal imaging during an endocrinology visit. With previous diagnostic information available for more than 94 percent of participants, the investigators found substantial discrepancies—or low concordance—between participants’ current eye health status and their self-reported eye health. The findings are published in Diabetes Care. 

“Preventing vision loss from diabetes is impacted by a person’s understanding of eye disease and the receipt of timely follow-up,” said lead author Paolo S. Silva, MD, co-chief of telemedicine at Beetham Eye Institute at Joslin and associate professor of ophthalmology at Harvard Medical School (HMS). “Our findings that less than half of patients with vision-threatening diabetic retinopathy reported being aware of any eye disease suggest a major information, understanding and/or communication deficit.”

Silva and colleagues evaluated all adult patients examined at the Joslin Diabetes Center who underwent retinal imaging as part of the Joslin Vision Network telemedicine program between January 2010 and March 2020. These participants were not receiving eye care at Joslin. Participants were categorized into three groups; patients with diabetes but no retinopathy; patients with minimal or mild diabetic retinopathy; and patients with vision-threatening diabetic retinopathy.

Participants were asked a series of questions about their eye care, such as when their last eye exam took place, when their next exam was scheduled and whether they’d ever been told diabetes has affected their eyes/retina.

While nearly all patients without diabetic retinopathy reported not having any eye disease, 89 percent of patients with mild cases and 55 percent of patients with vision-threatening diabetic retinopathy also reported that they were unaware of any eye disease. A quarter of those with vision-threatening disease also did not report planned follow–up in accordance with national guidelines.

Further analysis revealed that unawareness of eye disease was linked to a shorter diabetes duration, having had an eye exam more than a year ago and the lack of a future scheduled eye exam.

Increasing awareness of diabetic retinopathy was linked to increasing eye care provider specialization. Among those with vision-threatening diabetic retinopathy, patients who saw a retina physician had highest awareness of their diabetic retinopathy and the highest concordance with follow up.

“The implications of these findings for the care of patients with diabetes are substantial and impact primary care, diabetes/endocrinology specialists and eye care providers,” said corresponding author Lloyd Paul Aiello, MD, PhD, director of the Beetham Eye Institute at Joslin Diabetes Center and professor of ophthalmology at HMS. “There is a critical need for non-eye care providers to ensure that eye care has been received by the patient and to obtain ophthalmic documentation of diabetic retinopathy severity and the eye care plan.”

Co-authors included Jerry D. Cavallerano, OD, PhD, Jennifer K. Sun, MD, MPH, Ann M. Tolson, Dorothy Tolls, OD, and Lloyd M. Aiello, MD, of the Beetham Eye Institute at Joslin Diabetes Center, and Martin J. Abrahamson, MD, of Adult Care at Joslin Diabetes Center.

Research support provided by the Massachusetts Lions Eye Research Fund and the Joslin Diabetes Center [Diabetes Research Center (DRC) Enrichment Core and Clinical Research Center (grant number P30DK036836).

The Joslin Vision Network technology was developed at the Joslin Diabetes Center. A single ultrawide field imaging device was provided on temporary loan to the Joslin Diabetes Center by Optos, plc. and was used during part of this study. All authors were employees of the Joslin Diabetes Center for the duration of this study. No other related conflicting relationships exist for any author. Research support provided by the Massachusetts Lions Eye Research Fund to Drs. Aiello, Sun and Silva; and the Joslin Diabetes Center Diabetes Research Center, DRC Enrichment Core and Clinical Research Center grant number P30D, K 036836.

About Joslin Diabetes Center

Joslin Diabetes Center is world-renowned for its deep expertise in diabetes treatment and research. Part of Beth Israel Lahey Health, Joslin is dedicated to finding a cure for diabetes and ensuring that people with diabetes live long, healthy lives. We develop and disseminate innovative patient therapies and scientific discoveries throughout the world. Joslin is affiliated with Harvard Medical School and one of only 18 NIH-designated Diabetes Research Centers in the United States.