Strategies to Improve Prevention and Management in Diabetic Retinopathy: Qualitative Insights from a Mixed-Methods Study

Nonproliferative and proliferative diabetic retinopathy (DR) are common, progressive complications of diabetes with a rising incidence. Over time, patients with nonproliferative DR may progress to more advanced stages of DR, with an increased risk of vision-threatening conditions such as diabetic macular edema (DME). DME is the most frequent cause of vision loss in patients with diabetes and eventually can lead to blindness. Early-stage DR is asymptomatic; therefore, a coordinated management strategy is crucial to prevent or limit the progression of DR. Such a strategy includes regular screening for DR risk factors, glycemic control, and prompt diagnosis of DR. Preventive care should include a comprehensive dilated eye exam, ancillary tests, and patient education involving a multidisciplinary team composed of ophthalmologists, retina specialists, and primary diabetes care providers, including primary care providers and endocrinologists/diabetologists. However, although guideline recommendations for regular screening and patient education are well disseminated, many people with diabetes are not receiving ophthalmological care that could prevent visual impairment and blindness. We designed a mixed-methods study to explore the impact of patient-focused education on patient knowledge and self-efficacy in relation to DR prevention and management and to assess how online education can help to change patient knowledge, competence, and practice. Analysis of in-depth, qualitative data involving people with diabetes with or without DR collected 5-16 weeks after education participation shows that online patient education is an effective tool in building patient knowledge and awareness about DR and in motivating action in DR self-care.