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

Abstract

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.