There’s much we already know about the impact of age-related macular degeneration on vision. Now University of New South Wales researcher Dr Sheela Kumaran is working to measure the economic burden and impact of the disease on quality of life.
In any studies on vision loss, there’s an acknowledgement of the cost attached, both to individuals and society.
In 2018, the mean direct and indirect medical cost incurred by individuals with nAMD in Australia was estimated to be $2,784 and $5,333, respectively
The hip pocket cost is often counted in terms of the cost of treatment, but this only scratches the surface. There are additional financial burdens faced by individuals and households that are often not included.
Lost opportunity costs and the reduction in a person’s quality of life are costs that are often difficult to quantify.
In trying to work out the big picture, it is helpful to zoom in and look at the cost of vision loss from a patient’s perspective.
Layers of Cost
Doris’ life exemplifies the economic burden of AMD from a patient’s perspective, with multiple layers of direct, indirect, and intangible costs.1
Direct costs are the actual expenses related to a disease. They include the costs of diagnosis, tests, treatment, management, support services, allied health services, assistive devices, low vision aids, home modifications, residential/home care, informal care, and costs associated with travelling to doctors’ appointments, treatments, and other services.
Indirect costs include opportunity costs, in terms of time spent by patients or carers to manage the condition, rehabilitation, or preventative activities, the loss of income associated with these activities, reduced productivity at work, and financial burden on the society.
Intangible costs refer to the burden of the disease and its side effects on the patient and caregivers, in terms of reduced quality of life, health, and wellbeing.1
Medical Appointments and Treatment
Ophthalmology appointments for AMD are usually lengthy and include clinical examination, retinal imaging, and an intravitreal injection for those with nAMD.
The cost of appointments is usually determined by the clinical practices and may include some out-of-pocket expenditure to the patient after Medicare rebates.2
The two major anti-VEGF drugs used to treat nAMD – ranibizumab and aflibercept – are subsidised by the Pharmaceutical Benefits Scheme (PBS). They are provided to patients at a cost of $42.50 (non-concession) or $6.80 (concession card holder).2 However, these drugs incur a major cost to the government, with aflibercept being the costliest of all PBS drugs including those used to treat cancer, hepatitis C, and arthritis. In 2019–2020, aflibercept (Eylea) cost the Australian government nearly $400 million and ranibizumab costed $218 million, not including rebates.
In 2018, the mean direct and indirect medical cost incurred by individuals with nAMD in Australia was estimated to be $2,784 and $5,333 respectively.3 Very limited studies have assessed the costs associated specifically with dry AMD. According to a US Medicare analysis study, the annual ophthalmic expenditures for patients with dry AMD were lower than those with nAMD, with a range of US$287 to US$682 in 2011 for dry AMD and a range of US$1,737 to US$2,899 for nAMD.4
This is likely because of the paucity of treatment options for dry AMD. Nevertheless, late forms of dry AMD can lead to significant vision loss, incurring high indirect and intangible costs, such as loss of productivity and poorer quality of life.4
Nutritional Supplements
Nutritional supplements (based on the AREDS2 formula) are beneficial for people with intermediate AMD in one or both eyes and late AMD in one eye. Nevertheless, many take supplements without any indication.
Supplements are not covered by rebates and can be a significant out-of-pocket expenditure, costing an average of $28 per month in 2018.3
Since AMD is a chronic condition, the cost of supplements adds up over time and contributes to the overall expense associated with managing the condition.
Low Vision Rehabilitation
As AMD causes irreversible vision loss, low vision devices and other supportive care – such as increasing illumination, ergonomic adjustments, rehabilitation, and mobility aids – form a crucial part of disease management.5
Approximately 10% of patients renovate their home or purchase accessories due to the low vision associated with late AMD.6
Low vision devices can vary significantly in cost, with options ranging from free apps and inexpensive magnifiers ($20) to more expensive electronic devices ($5,000).5 Home modifications can cost anything from a couple of hundred to a few thousand dollars based on needs and complexities.
Travel, Time, and Loss of Income
AMD patients spend around 2.4 hours travelling to appointments every month.3
This costs an average of $65 for travel and parking. They spend around 4.5 hours in the clinic. For those who are working, this means a salary loss of approximately $186, excluding any additional day/s off needed to recover fully after the intravitreal injection.
Carer Burden
Approximately two-thirds of AMD patients need a carer to accompany them to their appointments.7 On average, carers spend six hours per month in medical appointments and four hours per week providing household assistance. This is equivalent to a loss of approximately $260 and $780 respectively.3 The burden on carers often makes it hard to meet their personal and employment obligations.
Other Costs
People with AMD also incur costs related to social and community services and lifestyle modifications. These are not explored much in the literature. Funded by Macular Disease Foundation Australia, our research team at the School of Optometry and Vision Science, UNSW Sydney, led by Professor Lisa Keay and Professor Konrad Pesudovs, is conducting a study to comprehensively estimate the out-of pocket expenditure incurred by people with AMD using a prospective cost diary.
While the results are being analysed, preliminary findings indicate that participants avail various social and community services for home help, cleaning, shopping, gardening, banking, church, club, and community transport, with costs for services ranging from $4–70.
One participant had drastically changed their diet to include salmon four times a week, weekly beef, and several pieces of fruit per day, which accounted for roughly $680 monthly. Another spent $160 travelling to social events.
Intangible Costs
Vision loss hinders healthy ageing. It is associated with increased morbidity, including a two-fold increase in the risk of falls and a four- to eight-fold increase in the risk of hip fractures.8
Vision loss reduces social interactions and leads to earlier admission into residential aged care by an average of three years.9
Vision loss due to AMD negatively affects the ability of individuals to perform tasks such as reading, driving, face recognition, watching TV, using computers and other devices, meal preparation, shopping, cleaning, and self-care.
This significantly impacts quality of life.9 Factors such as poor vision, poor sleep quality, inability to drive and maintain independence, poor social functioning, hearing impairments, and decreased cognition further contribute to poor quality of life.4,10 Utility values (decrements in quality of life) for AMD are comparable with asymptomatic HIV, mild hip osteoarthritis, mild and moderate angina, mild and moderate myocardial infarction, and diabetes mellitus.11
Depression is common among older people with vision impairments, especially among those with AMD.13 According to a recent study in Australia, 42% of patients receiving anti-VEGF treatment for AMD experienced depressive symptoms.14
Anxiety disorders, such as agoraphobia and social phobia, are also common among older people with vision impairments. Different studies estimate that 9.6–30% of people with AMD experience anxiety.12 Due to the difficulties in assigning a monetary value for these intangible costs, the economic impact of AMD is often under-estimated.
The Global Economic Impact
AMD is the leading cause of vision loss among older adults in Australia.14 Globally, in 2020, 1.8 million people were blind and 6.2 million people had moderate or severe vision impairment due to AMD.15 It is projected that by 2040, with an increasing ageing population and longer life expectancies, 288 million individuals worldwide will be affected by AMD.16
The prevalence of AMD and its associated expenses create a significant economic burden, not only on the patients and carers but also on countries and health systems.
In 2010, the global direct and indirect costs of vison impairment due to AMD was US$255 billion and US$88 billion, respectively.17
Policymakers and healthcare providers must, therefore, consider the holistic picture when developing new policies and programs to mitigate the economic impact of AMD.
Implementing routine quality of life measurements, including disease-specific assessments of economic impacts, will promote a better understanding of individual perspectives. Our research team is developing an advanced computer-based tool for assessing the quality of life in individuals with AMD, which has enormous potential for such applications. Addressing information deficit and knowledge gaps of patients, overcoming barriers to AMD treatment, early detection and treatment of mental health problems, timely referral to support services, falls prevention programs, peer support groups, and low vision rehabilitation services, may reduce long-term intangible costs by improving quality of life and delaying nursing home placements.
The ongoing original research described in this article was funded by a 2021–23 Macular Disease Foundation Australia Research Grant of just under AU$50,000. The grant, for research titled ‘Measuring the breadth and the depth of the quality-of-life impacts of age-related macular degeneration’, was awarded to Dr Sheela Kumaran, Professor Konrad Pesudovs, Professor Lisa Keay, and Associate Professor Gerald Liew.
Doris’ story is a portrayal of the first-hand experiences of individuals with AMD, as reported in research studies, consumer and community involvement groups, and the author’s clinical and research experience.
Doris’ Journey with AMD
Aged 80, she lives with neovascular age-related macular degeneration (nAMD). She’s lost her central vision, which has affected her ability to read, drive, and recognise faces.
“I can’t read like before! It’s the main thing that changed my life completely,” she says.
Doris uses magnifiers and recently bought an expensive video magnifier. Despite this financial outlay, she still can’t read the fine texts on medicine labels, price tags, information leaflets, and the bus schedules.
She is unable to manage money and is no longer confident making bank transfers. Ever since receiving the wrong change from a shopkeeper, she has felt vulnerable to scams and fraud due to her vision impairment.
Doris quit driving five years ago. She used to feel confident driving in reasonably good lighting and weather conditions, however as her vision deteriorated, it became exhausting. Eventually, she lost her driver’s licence and now depends on family and carers for transport. Of course, not being able to drive has affected Doris’ independence – she can no longer hop into her car to visit her friends and family or pursue hobbies.
Doris has struggled with the effects of nAMD for many years – it even bothered her when her vision was not severely impaired. Simple tasks, like cutting her toenails, required assistance from a podiatrist. Not being able to see the face of her newborn grandson caused her great distress.
Despite her best efforts, even Doris’ closest friends do not fully understand the challenges she faces. Recently, she was diagnosed with depression and prescribed medication to manage it.
Doris experiences anxiety and nervousness every month when she undergoes her anti-VEGF eye injection, which she describes as an unpleasant experience. Her eyes often feel red and gritty after the injection, causing discomfort that can take a while to subside. Her doctor’s appointments can last several hours, and the long waiting times often require her companion to take the day off work. Doris pays roughly AU$1,900 out of pocket annually for her injections.
The dread of injections, financial stress, complexities of travel, and carer burden often leave her feeling discouraged about continuing treatment, but the fear of going blind compels her to persevere.
Doris has been taking vitamin supplements and has modified her diet to include expensive organic meats, salmon, and leafy greens since her nAMD diagnosis 15 years ago. However, she is unsure whether these changes have been beneficial for her condition.
Due to the busy clinic schedule, Doris has never had much time to discuss her concerns or queries with her doctors. Furthermore, her mild hearing impairment and memory loss have made it difficult for her to communicate effectively and retain information, further complicating her situation.
Over the years, Doris’ quality of life has declined gradually, and she has become increasingly dependent on her family and carers for day-to-day activities. While she is grateful for the help she receives, not being independent adds to her psychological stress. With her daughter helping her with banking and driving her to doctors’ appointments, treatments, and social activities, she feels like a burden. Doris also has professional carers for cooking, gardening, and other household chores. As her vision has deteriorated, the amount of care time required has steadily increased.
Doris has had several falls over the past few years and has been hospitalised on a few occasions.
With a fear of falling, she has significantly limited her mobility and avoids stepping out of her home. Concerned about her safety, Doris’ family invested in some home modifications, as recommended by the optometrist and occupational therapist.
It has been a rough couple of years and Doris feels that she may have to move to a nursing home earlier than she had anticipated.
Dr Sheela Kumaran is a postdoctoral research fellow at the School of Optometry and Vision Science, Faculty of Medicine and Health, UNSW Sydney, with undergraduate and postgraduate degrees in Optometry and a PhD in Public Health.
She has extensive experience in clinical low vision practice and teaching. Her research primarily focusses on voicing the patient’s perspective of vision-related quality of life impacts of various eye conditions and their real-world implications, as well as orchestrating reliable measurement of latent traits using advanced psychometric techniques and computer adaptive testing systems. She is a member of the international society for quality-of-life research, a proxy member of the Vision 2020 Australia global committee, and an associate member of the UNSW Ageing Futures Institute.
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