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.