Economic Burden of Late-Stage Age-Related Macular Degeneration in Bulgaria, Germany, and the US
Report on the Economic Burden of Late-Stage Age-Related Macular Degeneration in Bulgaria, Germany, and the United States
Academic Background
Age-related macular degeneration (AMD) is a highly prevalent and debilitating retinal condition, affecting over 200 million people worldwide. Among them, late-stage AMD, which includes neovascular AMD (nAMD) and geographic atrophy (GA), impacts over 11 million people globally. AMD is the leading cause of visual impairment and blindness in high-income countries, especially among individuals over 45 years old, with a prevalence rate of about 8.7%. Due to global aging trends, the number of AMD patients is projected to rise to 288 million by 2040.
AMD is a progressive disease of the central retina, leading to blurred vision, distortion, and loss of central vision. Major risk factors include aging, smoking, and diet. Late-stage AMD poses a significantly higher risk of severe vision impairment compared to early and intermediate stages. While treatment options exist for nAMD, GA has limited therapeutic options, with no approved therapies in Europe at the time of this study. AMD not only severely impacts patients’ visual capabilities, such as visual acuity, visual field, color perception, and contrast sensitivity, but also significantly affects their quality of life, mental health, and economic circumstances.
Although prior studies have examined the economic burden of AMD, they have mostly focused on direct medical costs, with less emphasis on the productivity losses and mental health costs borne by patients and their caregivers. A comprehensive evaluation of AMD’s economic burden is critical for health policy development, economic planning, technology assessment, and public health initiatives.
Study Source
This study was authored by Nabin Paudel, PhD, Laura Brady, PhD, Petia Stratieva, MD, PhD, and others. The research team comprises experts from Retina International (Dublin, Ireland), Apellis International (Zug, Switzerland), F. Hoffmann-La Roche (Basel, Switzerland), and more. The study was published online on October 31, 2024, in the journal JAMA Ophthalmology (DOI: 10.1001/jamaophthalmol.2024.4401).
Study Design and Methodology
Objective
This study aimed to evaluate the socioeconomic burden of late-stage AMD in Bulgaria, Germany, and the United States, covering direct medical costs, indirect medical costs, well-being costs, and productivity costs.
Design
The study employed a cost-of-illness prevalence approach to estimate the economic burden of late-stage AMD. Data on healthcare resource utilization, mental health, and productivity were collected from patients and caregivers, complemented by published literature. Data collection spanned from January 2021 to March 2022, with analyses conducted between April and July 2022.
Participants
Participants included individuals aged 50 or older with a diagnosis of late-stage AMD (nAMD or GA) in one or both eyes, along with their caregivers. In Bulgaria and Germany, participants were recruited via ophthalmology clinics, while in the United States, recruitment occurred through online newsletters and social media.
Data Collection and Analysis
The study gathered data through surveys targeting patients and caregivers on healthcare resource utilization, mental health, productivity, and daily living activities. Cost data included clinical examinations, prescriptions, and medical devices, supplemented with clinician interviews and public data sources. Additionally, a review of the literature was conducted to determine the prevalence of late-stage AMD, considering low, mid, and high prevalence scenarios.
Cost Categories
The financial burden of late-stage AMD was segmented into four main categories:
- Direct Medical Costs: Costs related to diagnosis and treatment.
- Indirect Medical Costs: Costs for assistive technologies, fall-related injuries, formal care (e.g., home care or nursing homes), travel to eye clinics, and nutritional supplements.
- Well-Being Costs: Monetized losses related to low vision, anxiety, and depression arising from the disease.
- Productivity Costs: Losses from decreased productivity and employment changes in both patients and caregivers.
Results
Patient and Caregiver Demographics
A total of 128 late-stage AMD patients and 61 caregivers participated. Among patients, 62% were female, and 94% were aged 60 or older. Among caregivers, 70% were female, and 91% were aged 45 or older.
Economic Burden
The annual economic burden of late-stage AMD was estimated at: - €449.5 million ($512.5 million) in Bulgaria, - €7.6 billion ($8.6 billion) in Germany, and - €43.2 billion ($49.4 billion) in the United States.
Direct medical costs accounted for only 10%–13% of total costs across all countries. The largest contributor to the economic burden in Germany and Bulgaria was reduced well-being (67% and 76%, respectively), while in the U.S., productivity losses were the highest contributor (42%).
Bulgaria
- Total costs ranged from €84.6 million to €1.5 billion, with a mid-level prevalence estimate of €449.5 million.
- Well-being costs accounted for 87% (GA) and 64% (nAMD) of the total.
- Per-patient annual costs were estimated at €19,311 (GA) and €20,047 (nAMD).
Germany
- Total costs ranged from €1.4 billion to €10.1 billion, with a mid-level prevalence estimate of €7.6 billion.
- Well-being costs accounted for 88% (GA) and 48% (nAMD) of the total.
- Per-patient annual costs were estimated at €19,482 (GA) and €20,475 (nAMD).
United States
- Total costs ranged from €8.3 billion to €119.7 billion, with a mid-level prevalence estimate of €43.2 billion.
- Productivity costs accounted for 46% (nAMD) and 36% (GA) of the total.
- Per-patient annual costs were estimated at €48,895 (nAMD) and €39,250 (GA).
Cost Distribution Across Countries
Significant variations were observed in costs across the studied countries. Key differences included: - Higher direct medical costs for nAMD compared to GA in all countries. - In Bulgaria and Germany, well-being costs were the largest contributors to the total burden, while productivity costs were highest in the U.S. - Indirect medical costs were disproportionately higher in the U.S. for GA. - Financial costs constituted a higher percentage of total costs in the U.S. (70% for GA, 72% for nAMD) compared to Bulgaria and Germany.
Discussion and Conclusion
Discussion
This study provides a comprehensive assessment of the economic burden of late-stage AMD. It reveals that well-being costs and productivity losses are significant contributors, particularly in Germany and Bulgaria for well-being and in the U.S. for productivity. Furthermore, nAMD exhibited higher direct medical costs than GA due to the availability of more treatment options.
In the U.S., higher productivity losses suggest that AMD notably impacts the working-age population. Additionally, caregivers in the U.S. bore a disproportionately higher productivity burden, especially for GA, indicating a potential need for increased caregiver support and workplace accommodations.
A novel aspect of this study was the monetization of well-being costs, highlighting AMD’s profound psychological and emotional impact on patients and caregivers. This finding underscores the importance of integrating mental health services into care pathways for AMD.
Conclusion
Late-stage AMD imposes a substantial economic burden on patients, caregivers, and society, comparable to chronic non-life-threatening conditions like Parkinson’s disease and obesity. This is the first study to comprehensively quantify the costs associated with well-being and productivity losses in addition to direct and indirect medical costs. The findings point to an urgent need for strategies to mitigate this burden, such as: - Improving early detection and rehabilitation services, - Expanding access to current and future therapies for both nAMD and GA, and - Addressing gaps in caregiver support systems.
Study Highlights
- Comprehensive Scope: This study addressed all aspects of AMD costs, including direct, indirect, well-being, and productivity losses.
- Cross-National Comparison: It highlighted how healthcare systems and economic contexts impact the AMD burden in Bulgaria, Germany, and the U.S.
- Policy Implications: Results provide a strong foundation for policymakers to make informed decisions about investments in AMD care and treatment.
Limitations
- Small Sample Size: Limited participant numbers may have led to over- or underestimation of certain cost parameters.
- Assumptions in Well-Being Costs: Lack of country-specific quality-adjusted life-year data for AMD may have introduced biases.
This study provides critical insights into the multifaceted economic burden of late-stage AMD, offering valuable evidence for shaping future healthcare policies and research priorities.