Glaucoma awareness and screening uptake in relatives of people with glaucoma

Purpose To assess glaucoma awareness and screening uptake in relatives of people with glaucoma. Methods A questionnaire was administered to 52 patients with primary open-angle glaucoma. They were asked about their awareness of glaucoma clustering within families, and the need for glaucoma screening in relatives of glaucoma patients. Patients were asked to identify one or more first-degree relatives, aged over 40 years and thus eligible for free glaucoma screening in the United Kingdom. These relatives were mailed a similar questionnaire. In performing the statistical analysis we corrected for possible clustering within families. The study was approved in advance by our local ethics committee, and all participants were informed of the United Kingdom's free screening service afterwards. Results Ninety relatives were identified, of whom 70 (78%) returned questionnaires. Only 53% of responding relatives thought they were at increased lifetime risk of developing glaucoma. Though 81% of relatives had been screened, many were screened infrequently. We compared the responses of patients' siblings and patients' offspring. Perceived lifetime glaucoma risk was similar in the two groups, but the (older) siblings had a significantly lower awareness of the free screening service ( p = 0.03) and attended for screening less frequently ( p = 0.07). Uptake of regular, free glaucoma screening at least every 2 years was 57% among offspring and 30% among siblings ( p = 0.005). Because of selection bias (good communicators were more likely to be invited to participate) the true rates of glaucoma awareness and screening uptake are almost certainly lower than this. Conclusions Relatives of people with glaucoma should be made more aware of the need for glaucoma screening, and encouraged to use the free screening service. Older relatives should be particularly targeted.