Purpose: This study explored patients' understanding of the risk factors for diabetic retinopathy (DR) and their personal beliefs about the cause and controllability of their own DR, as well as health professionals' perceptions of patients' understanding of DR and its cause.
Methods: Eight focus groups and 18 semistructured interviews were conducted with 57 patients with DR, and seven semistructured interviews were conducted with diabetes and ophthalmic specialists. Sessions were transcribed verbatim and iteratively analyzed using the constant comparative method and NVIVO software.
Results: Nearly 50% of participants had proliferative DR, and most patients had undergone laser treatment. Patients had a reasonable understanding of the basic risk factors for DR such as diabetes control, although they were less clear about specific risk factors such as blood pressure and lipid control. Regarding their own disease, most patients attributed their DR either to poor diabetes control or to failings of the health care system. Some patients believed that their DR was a result of health aspects beyond their control or environmental factors, whereas others were unsure about the cause. Diabetes and ophthalmic specialists believed that many patients lacked understanding about the cause of their DR and the goal and outcome of laser treatment. Difficulty communicating the abstract concept of laser treatment outcomes in the face of concrete (yet erroneous) anecdotal evidence of the detrimental impact of laser on visual acuity was highlighted as a major barrier to mitigating patients' harmful beliefs about treatment.
Conclusions: This study revealed some important gaps in patients' knowledge and potentially damaging beliefs about the cause and treatment of DR despite most patients having considerable exposure to eye health professionals and DR treatment. Improving patients' understanding of the major risk factors for DR and the realistic outcomes of laser treatment may improve patients' coping mechanisms, adaption to disease, and ocular outcomes.