A study exploring patients’ understanding of the risk factors, cause and controllability of their own diabetic retinopathy revealed important gaps in knowledge and potentially damaging beliefs about cause and treatment.
Eight focus groups and 18 semi-structured interviews were conducted with 57 patients with diabetic retinopathy (DR), nearly half of whom had proliferative DR. Most of these patients had also undergone laser treatment.
At the conclusion of the study, patients were found to have 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.
Along with patient interviews, seven semi-structured interviews were conducted with diabetes and ophthalmic specialists to glean health professionals' perceptions of patients' understanding of DR and its cause.
It was found that the diabetes and ophthalmic specialists believed 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, albeit 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.
“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,” the study authors said.