Journal d'ophtalmologie clinique et expérimentale
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Patients with Advanced Diabetic Retinopathy’s Understanding of Diabetes Mellitus and Their Diabetic Eye Disease: A survey of 100 patients currently undergoing treatment for Diabetic Retinopathy in a Large Retinal Practice

Michelle V Carle, Thomas G Chu, Michelle Miller, Homayoun Tabandeh, David S Boyer

Objective: To better understand what patients with advanced diabetic retinopathy understand about their DED and treatment, control of their diabetes, and risk factors for disease progression, and to assess which areas clinicians may want to target for education to increase patient understanding. Methods: 100 consecutive patients with at least 5 previous visits to a retinal clinic were surveyed to better understand patients’ understanding of DM, DED, and the treatments they were receiving for DM and their DED. Demographic information (age, gender, educational status, ethnicity, language, duration and treatments for DM) was collected, along with information about treatments and understanding of risk and modifiable factors about DM. Data was verified against the chart. Results: 100 surveys were completed; 97% of patients said they “understand DM”. 61% of patients were 60 years or older, and half of the patients had done some post-secondary educational training. The ethnic breakdown included 27% Caucasian and 38% Hispanic. Fasting blood glucose (FBG) was known in 89% of patients and when asked the range of FBG: 6% did not know; 17% had FBG as >160 mg/dl; and 35% had a FBG of <130 mg/dl. Regarding controlling their DM, 74% of patients did not identify exercise and 33% did not identify dietary habit as important in control. 95% identified blood pressure (BP) as important to monitor. 39% were unable to identify their current BP range, 31% identified their systolic BP as ≥ 130mmHg, and 7% described it as usually >150mmHg. Patients were asked to identify DM related ocular complications: 23% said bleeding; 7% said diabetic macular edema; and 73% said blindness or visual loss. As patient age increased, the ability to correctly identifying current treatments, and knowledge of hemoglobin A1C (HbA1C), decreased. Ability to correctly identify HbA1C increased with increasing education. Conclusions: This survey shows patient misunderstanding in: how DM is treated, risk factors for DM, and how monitoring should be done. Emphasis is likely needed in diet modification and exercise for control of DM. Patients may be at risk for poor understanding of DM care/treatment (particularly those with lower educational achievement, or more elderly). Additional resources may need to be developed for sub-sets of patients.