Health Tool for Blindness Prevention among High-Risk Diabetic Retinopathy Patients: A Focus Group Study With Adults With Diabetes (Preprint)

BACKGROUND Diabetic retinopathy (DR), a leading cause of preventable blindness among working-aged adults. Black, Latine, and individuals living in poverty are screened less for DR, diagnosed later, treated less often, and go blind more than wealthy white individuals. OBJECTIVE Through a community-led research approach, this project engaged community members directly to co-design a digital health tool that is accessible, user-friendly, and culturally relevant. METHODS Using a qualitative approach, we conducted 4 semi-structured focus groups with 19 individuals from the Greater New Haven area, aged 18 years or older, and diagnosed with diabetes. We transcribed and coded contextual interviews and categorized them into themes using affinity mapping. The study has two specific aims: (1) to complete a comprehensive needs assessment aimed at (2) developing a community-responsive digital health tool to increase access to and knowledge of diabetic retinopathy (DR) screening in high-risk populations. We transcribed the focus group interviews, used rapid qualitative analysis to generate themes, and completed affinity mapping to identify content and features for a digital health tool for preventing blindness from diabetic retinopathy. RESULTS We interviewed 19 individuals (68% female, 47% Black, 26% Hispanic,11% indigenous) in 4 focus groups. Over 80% had access to smart devices. Participants’ self-reported mean SD A1c was 6.77 1.93. Age mean SD was 58.79 19.54. Almost half (48%) of participants completed some college. The principal themes obtained from coding contextual interviews were desired app attributes, mental impact, informal support, content knowledge related to diabetes, barriers, diet-related topics, and receiving notifications. CONCLUSIONS DR is one of the leading causes of blindness, and many treatments exist. Despite the existence of treatments, historically marginalized populations experience poor health outcomes, including blindness. Our community-based approach empowers the creation of a culturally sensitive digital health tool that will engage more of the patient population with DR.