Self-Reported Awareness of Retinopathy Severity in Diabetic Patients

Yaqoob Qaseem; Sahej Samra; Olga German; Elizabeth Gray; Manjot K Gill

doi:10.2147/OPTH.S267993

Self-Reported Awareness of Retinopathy Severity in Diabetic Patients

Clin Ophthalmol. 2020 Sep 25:14:2855-2863. doi: 10.2147/OPTH.S267993. eCollection 2020.

Authors

Yaqoob Qaseem¹, Sahej Samra¹, Olga German¹, Elizabeth Gray², Manjot K Gill¹

Affiliations

¹ Department of Ophthalmology, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA.
² Biostatistics Collaboration Center, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA.

Abstract

Background: Diabetic retinopathy (DR) may be asymptomatic in both mild and advanced stages. A patient's accurate perception of their DR severity may therefore be critical for effective self-management behaviors and understanding the need for timely intervention and follow-up.

Purpose: To evaluate the relationship between self-reported and actual retinopathy severity in diabetic patients.

Methods: This study was a single-center cross-sectional survey. Diabetic patients identified by enterprise data warehouse were sent an online questionnaire where they were asked to self-assess for presence of DR and grade their severity. Actual DR grading was determined via chart review. The primary outcome measures were patient-assessed DR severity and agreement with actual DR severity.

Results: Of 3208 invitations sent, 324 (10%) patients responded and 319 responses were analyzed. The data showed that 39 of 253 (15%) with no DR, 26 of 40 (65%) with mild/moderate DR, and 24 of 26 (92%) with severe DR believed they had DR (p<0.001). Of those with no DR, 214 of 253 (85%) accurately assessed absence of DR. Of those with mild/moderate DR, 25 of 40 (63%) accurately assessed their severity, 14 of 40 (35%) believed they had no DR, and 1 of 40 (3%) believed they had severe DR. In patients with severe DR, 9 of 26 (35%) correctly assessed their severity, 15 of 26 (58%) believed they had mild/moderate DR, and 2 of 26 (8%) believed they had no DR.

Conclusion: Patients with severe DR were the most likely to report presence of DR, but often underestimated their disease severity. Many with mild/moderate DR did not realize they had DR. This consistent underestimation of severity across all a significant barrier to timely follow-up and treatment necessary to prevent future visual impairment.

Keywords: accuracy; anti-VEGF; awareness; barriers; diabetes; diabetic retinopathy; perception; screening; self-report; severity; survey; understanding.

Grants and funding

Northwestern Medicine Enterprise Data Warehouse Pilot Data Program Chicago, IL. Illinois Society for the Prevention of Blindness Chicago, IL. The sponsor or funding organization had no role in the design or conduct of this research.