Disease Awareness Among Patients With Age-Related Macular Degeneration: Patterns and Predictors

Purpose: To examine the prevalence and predictors of patient awareness of their disease in adults with age-related macular degeneration (AMD). Methods: This study analyzed 5553 adults 40 years or older in the 2005–2008 National Health and Nutrition Examination Survey who underwent retinal imaging. AMD was determined based on retinal images. Patient awareness of their AMD was assessed by a self-reported AMD diagnosis. Multivariable logistic regression models were constructed to examine the association of patient awareness of their AMD with sociodemographic characteristics and specific AMD lesion types on retinal imaging. Results: AMD was identified in 425 of the adults surveyed (6.5%) (95% confidence interval [CI], 5.5%-7.5%), including 87.7% (95% CI, 82.9%-92.5%) with early AMD and 12.3% (95% CI, 7.5%-17.1%) with late AMD. Among adults with either type of AMD on retinal imaging, 17.5% (95% CI, 13.1%-22.0%) were aware of their disease, which included 11.6% (95% CI, 8.4%-14.9%) with early AMD and 59.2% (95% CI, 43.1%-75.3%) with late AMD ( P < .0001). In the same group, those aged 60 years or older (odds ratio [OR], 33.46; 95% CI, 7.67-146.03) and with a best-corrected visual acuity of 20/40 or worse (OR, 4.63; 95% CI, 2.95-7.26) had higher awareness of their AMD diagnosis, whereas Hispanic (OR, 0.28; 95% CI, 0.09-0.88) vs White adults and those who did not speak English at home (OR, 0.05; 95% CI, 0.01-0.41) had lower awareness of their diagnosis. Conclusions: Fewer than 1 in 5 adults with AMD were aware of their personal diagnosis, including fewer than 3 in 5 adults with late AMD. Older adults and those with worse vision were more likely to know they have AMD, whereas Hispanic adults and those who did not speak English at home were less likely. Efforts to increase patients’ awareness of their AMD may improve rates of follow-up and prevent vision loss.