Undiagnosed Diabetic Retinopathy: Using Participatory Science to Design an Intervention for Patients at High-Risk for Blindness

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Project Summary/Abstract There are several gaps in our understanding of the population with diabetic retinopathy (DR) that is not being screened and how best to manage those at high-risk for DR. Continued existence of these gaps underlies the difficulty in addressing the long-term goal of the proposed research program: to decrease preventable blindness from DR. The overall objective of this proposal is to design a patient navigator intervention for those at high-risk for DR informed by a national analysis of undiagnosed DR. The central hypothesis is that the candidate can create a feasible and acceptable program to increase utilization of eye care in those at high-risk for DR. The rationale for the hypothesis is that engaging high-risk patients with diabetes in eye screening will facilitate earlier treatment of DR and decrease preventable blindness. The proposal features a multi-method approach to determine the prevalence and the individual and neighborhood level characteristics of undiagnosed DR, and a patient navigation program pilot study for those at high-risk for DR. The candidate will reach the overall objective by pursuing the following two specific aims: 1) Determine national prevalence of undiagnosed DR with a focus on racial and ethnic disparities and geospatial variation; and 2) design and pilot a patient navigator program for those at high-risk for DR. For the first aim, a representative sample of the US population will be evaluated using the National Health and Nutrition Examination Survey, 2005-2008. Participants who underwent fundus photography and were diagnosed with DR based on software-assisted image grading will be included in the analysis. Those who reported a prior diagnosis of DR in an in-home interview will be compared to those that did not report a diagnosis of DR. For aim two, the Tailored Implementation for Chronic Disease implementation science framework will inform the design of the program. First, we will conduct semi-structured interviews with local community members with diabetes who have not had an eye exam within 1 year. Second, the determinants identified during the interviews and in the first aim will be applied to the framework. Third, determinants will be prioritized and a multidisciplinary team of stakeholders will design of the program. Fourth, sixty participants will be recruited from a population with diabetes stratified by eye care utilization and risk based on data from the institutional electronic medical record. The program will include an individual patient navigator assessment, a clinical evaluation, an educational experience, and patient navigator follow-up. This approach is innovative because it identifies the population with undiagnosed DR, uses a risk calculator to identify those at high risk for DR, and employs a patient navigator-based program to improve screening for those at high risk for DR. This study is significant because it investigates the gap between published guidelines and the population that continues to go blind despite well-established recommendations for screening. Dr. Nwanyanwu’s short-term goal is to develop expertise in implementation science to address health disparities in diabetic eye care. Her training program supports her immediate training goals through coursework and independent study.