A recent study explored the economic impact of late-stage age-related macular degeneration on patients and their caregivers across the United States, Germany, and Bulgaria.
Age-related macular degeneration (AMD) is a progressive disease with negative impacts on visual acuity, visual field, color vision, and contrast sensitivity, as well as an association with impaired vision-related quality of life, the researchers wrote in their recent JAMA Ophthalmology article. These physical outcomes are associated with adverse economic outcomes, as AMD patients can require support such as caregiving services, vision aids, and rehabilitation. However, the researchers noted this impact on patient and caregiver emotional well-being and productivity has not been studied in depth.
In this study, patients with AMD in one or both eyes and their caregivers were surveyed on their experiences with the disease in practices in Germany and Bulgaria. In the US, participants completed an on online survey that was distributed through email and social media groups. The researchers analyzed data from April to July 2022 and found four main cost categories: direct medical costs (related to diagnosis or treatment of AMD), indirect medical costs (assistive technology and other care costs, travel to appointments, treatment for fall-related injuries), well-being costs (non-monetary costs of experiencing anxiety, depression, and low vision), and productivity costs (employment changes and changes in lifestyle).
They found that the annual economic burden of late-stage AMD was substantial, with estimates of $49.4 billion in the US, $8.6 billion in Germany, and $512.5 million in Bulgaria. Notably, only 10-13% of these costs were associated with direct medical expenses. In the US, per-individual costs for the late-stage AMD stages of geographic atrophy (GA) and neovascular AMD (nAMD) were $44,755 and $55,752, respectively. In Germany, per-annum costs were $22,214 for GA and $23,346 for nAMD. For Bulgaria, individual annual costs were estimated at $22,019 for GA and $22,858 for nAMD.
The study reported caregiver productivity losses and informal care costs were significant contributors to the overall economic burden, especially in cases of advanced GA and nAMD. In the US, productivity losses accounted for the largest share of costs (42%), perhaps indicating a greater impact on the working-age population, as the researchers described. In Germany and Bulgaria, reduced well-being was the most significant contributor (67% and 76%, respectively), which the researchers speculated could be related to access to health care and social support. They found “no meaningful difference in well-being cost between GA and nAMD” for patients and caregivers in the US and suggested further research to better understand the discrepancy between well-being costs in the US and Europe.
They noted that their findings were commensurate with the economic burden experiences of Parkinson’s patients and their caregivers, but funding for vision research is comparatively lower. There is, therefore, an unmet need to reduce costs associated with late-stage AMD.
“One potentially novel aspect of this study was to quantify well-being associated with the disease in terms of monetary value,” the researchers concluded. “While this approach is not widely used in literature, we believe that incorporating these costs is essential to understand the full burden of the disease.”