Identification of population characteristics through implementation of the Comprehensive Diabetic Retinopathy Program

BACKGROUND: Diabetic retinopathy is the most common cause of blindness in working-age adults. Characteristics of patients with diabetes presenting to a retina subspecialty clinic have not been adequately studied, limiting our ability to risk stratify patients with diabetic retinopathy. Our goal is to describe an innovative program that collects structured, longitudinal data on patients with diabetes in a retina clinic, and identifies population characteristics to define patient risk stratification. METHODS: Demographics, body-mass index, blood pressure, hemoglobin A(1c), smoking history, diabetes type, diabetes duration, kidney disease history, and diagnosis codes were collected on all patients with diabetes at the Kellogg Eye Center retina clinic. A mixed effects negative binomial regression was then performed to assess visit frequency as a function of these variables. Visit frequency was used as a marker for cost of care. A subgroup of patients was surveyed about knowledge of diabetes management goals and barriers to better self-management. RESULTS: There were 2916 patients in the cohort with 1014 in the subgroup. The cohort was predominantly Caucasian (74.5%), with a mean age of 64 years (range 13–99) and a relatively even distribution of sex (53.2% men). The mean maximum hemoglobin A(1c) was 8.0% (range 4.3–15.7%), and 57.1% had a diagnosis of diabetic retinopathy. Patients averaged 3.9 visits (range 1–27) during the 18-month study period. Blood pressure and duration of diabetes were positively associated with visit frequency (p < 0.0001, p < 0.0001, respectively). Of the surveyed patients, 87.6% knew their goal hemoglobin A(1c), while only 45.9% identified the correct blood pressure goal. The most common reported barrier to better self-management was “it’s just not working” (47.1%). CONCLUSIONS: Implementation of this program enables the creation of a longitudinal dataset on patients with diabetes. Resulting data can be used to improve quality of care provided to patients at a retina clinic. The findings suggest considerable healthcare resources are being directed to a small patient population. This enhanced understanding of characteristics of patients with diabetes will improve efforts to preserve vision and utilize health system resources efficiently.