Self-reported patient history isn’t objective data, and patchy recounting of medical history may have important consequences for diseases like glaucoma, where family history of the disease increases an individual’s risk. Self-reported data carries a threefold increased risk, which is an underestimation, as many patients aren’t aware of family members who have glaucoma. A recent study launched a campaign to screen first-degree relatives of glaucoma patients in South India to gain a more accurate risk assessment, but the study revealed that getting those relatives into the clinic wasn’t easy.

The researchers contacted 1,598 glaucoma patients by letter or by both letter and phone and asked them to bring their siblings and children to a glaucoma screening. A total of 206 participants attended screening, along with 50 siblings and children. The participants underwent standard eye exams and questionnaires to assess their risk for glaucoma and any potential barriers to care.

The researchers found that these patients were nearly twice as likely to attend if they’d been contacted by both letter and phone, rather than letter only. More than 50% of patients stated that their relatives couldn’t attend because they did not live in the region, and 20% said their relatives had other commitments. Of those relatives who did attend, 58% didn’t know they were at increased risk for glaucoma due to family history, 32% didn’t know that the relative who invited them to the screening had glaucoma and 26% actually had concerning findings for glaucoma. The researchers reported that the average cost per first-degree relative to get screened was about $33.

Despite these numbers, the researchers noted that the level of glaucoma awareness among patients in the study seemed greater than in previous reports from India. They believe this is likely because the Aravind Eye Hospital recommends family screening as part of its routine glaucoma patient counseling.

The researchers concluded that attendance was poor in this glaucoma screening campaign, but they identified areas for improvement such as screening location and method of invitation. “Innovation is needed to improve this campaign approach or to identify more effective strategies for reaching those at high risk of glaucoma who remain undiagnosed,” they wrote in their paper.

Shroff S, Gu SZ, Vardhan A, et al. Screening first-degree relatives of glaucoma patients reveals barriers to participation. Br J Ophthalmol. January 8, 2021. [Epub ahead of print].