Perceptions of diabetic retinopathy and screening procedures among diabetic people

Aims To assess how diabetic patients perceive retinopathy, screening for sight-threatening lesions and their own role in preventing blindness. Methods A questionnaire was administered to 258 consecutive patients after screening for retinopathy, according to the European Field Guide-Book procedure, in Turin (n = 130) and Wales (n = 128, W). All Welsh patients and 70 in Turin (T1) were on standard diabetes care at their clinic or general practitioner, whereas 60 in Turin (T2) were on permanent group education. Results According to 65%, 84% and 100% of patients in W, T1 and T2, respectively, diabetes may damage the eyes. Retinopathy had been heard of by 48% (W), 67% (T1) and 100% (T2). In T2, 82% of patients could give a meaningful description of retinopathy but only 17% could use correctly the word 'retina'. In W and T1, 16% and 19% could describe retinopathy but none could describe the retina. In W and T1, 47% and 57% believed they could not help with eye care, whereas 78% in T2 replied that they should control diabetes and 20% that eyes should be checked regularly. Regarding reasons for screening, 100% of patients in T2 answered 'prevention and checks', against 61% in T1 and only 9% in W. In T1 and W, 33% and 37% did not know why they were being screened. Conclusions Patients' health perceptions and internal control mechanisms may be insufficiently developed for optimal participation in retinopathy screening. Diabetes care by long-term group education may address this problem.