Targeting relatives of patients with primary open angle glaucoma: the help the family glaucoma project

PURPOSE: To assess the knowledge of patients with open angle glaucoma (OAG) and their family members about OAG risk factors and to study the referral of family members for eye examinations. DESIGN: Cross-sectional survey and prospective cohort study. METHODS: We interviewed OAG patients (probands) at the Wilmer Eye Institute and their biologically related parents, siblings, and children about their knowledge of OAG risk factors. Qualified family members were offered an eye examination through the EyeCare America program. Three months after initial contact, a follow-up telephone questionnaire determined the outcome of the referral. RESULTS: Among 102 probands and 100 (of 230 eligible) family members who were interviewed, there was high awareness that OAG is related to older age (85% both groups). More probands knew of the association with higher intraocular pressure (95%) compared with family (78%). Yet, 21% of both groups were not aware that OAG is hereditary, and only 53% of probands and 30% of family members knew that OAG is more common in certain ethnic groups. Only two-thirds of probands had suggested that family members have an eye examination. Eighty percent of family members had had an eye examination within the last year; of 21 with no recent examination, 66% (13/21) accepted referral. CONCLUSIONS: The Help the Family Glaucoma project developed a novel approach to identify those at high-risk for OAG. Screening of relatives of OAG patients deserves further study in a more representative selection of the general population.