Photo Credit: Zest_marina

Direct medical bills are less than 15% of the high costs that patients with late-stage age-related macular degeneration (AMD) and their caregivers face, according to a multinational study published in JAMA Ophthalmology.

“Late-stage AMD imposes a substantial economic burden akin to other common non-life-threatening diseases, such as [Parkinson’s] disease and obesity,” Nabin Paudel, PhD, and colleagues wrote. “Reduced well-being and loss of productivity were relatively large contributors to the total economic burden.”

 To estimate the overall costs of late-stage AMD in Bulgaria, Germany, and the United States, the researchers surveyed people aged 50 years and older with late-stage AMD in one or both eyes and their caregivers. Participants in Bulgaria and Germany were recruited through ophthalmology clinics, while those in the United States received their surveys through emailed newsletters and social media groups intended for patients with late-stage AMD and their caregivers.

Patients and caregivers received separate cross-sectional surveys between January 2021 and March 2022. Patients answered questions about healthcare utilization, self-reported vision health, emotional well-being, productivity, and activities of daily living. Caregivers responded to questions about caregiving responsibilities, productivity, emotional well-being, and activities of daily living. Dr. Paudel and colleagues obtained cost data on clinical examinations, prescriptions, and medical devices from public sources and clinician interviews.

Of the 128 respondents who had late-stage AMD, 62% were women and 94% were aged 60 years or older. Of the 61 caregivers, 70% were women and 91% were aged 45 years or older.

 Relative Economic Burden Varied by Country

The researchers grouped costs associated with late-stage AMD into four categories:

• Direct medical costs related to the diagnosis and treatment of the disease;
• Indirect medical costs associated with assistive technologies, emergency or inpatient treatment, formal home help or nursing home care, and other related expenses;
• Well-being costs of disease sequelae, including low vision, anxiety, and depression; and
• Productivity costs due to lost productivity and employment changes for patients and caregivers.

A cost-of-illness prevalence approach to estimate costs showed the substantial total economic burden of late-stage AMD.

• In all three countries, only 10% to 13% of the total costs were due to direct medical care.
• In Germany and Bulgaria, reduced well-being carried the greatest economic burden (67% and 76%, respectively), while loss of productivity (42%) was the main factor in the United States.

The authors acknowledged limitations of the study that may have affected the results, including the relatively small sample size in each country and assumptions about the monetary value of well-being.

“Despite these constraints, our study provides a picture of the substantial direct, indirect, and intangible costs imposed by late-stage AMD,” they added.

More Research Needed

Economists focus on direct medical costs because they are easily linked with diseases and tend to be relatively easy to quantify, David W. Hutton, PhD, and Joshua D. Stein, MD, MS, wrote in an accompanying invited commentary.

“The authors should be commended for looking at the total societal costs of AMD across three countries, particularly using a survey that included not only people living with AMD, but also their caregivers,” they wrote. “This study’s results are broadly similar to other studies in countries including the US, Canada, and Australia that find the impacts on productivity and quality of life are higher than direct medical costs.”

Dr. Hutton and Dr. Stein noted that more research is needed in this area, including studies with larger sample sizes and with considerations for unilateral versus bilateral disease and other conditions, “to get a better, more complete picture of the costs of vision-threatening conditions.”