Geographic atrophy, a form of advanced age-related macular degeneration (AMD), is one of the leading causes of legal blindness. Yet, this progressive and irreversible disease is still not well understood and therefore a study was conducted to further investigate the true impact of geographic atrophy in the United States.
Sunil S Patel, MD, PhD, is a US retina specialist who co-led this Roche and Genentech non-interventional study. With his team, Dr Patel interviewed eight geographic atrophy patients, six caregivers and five healthcare practitioners to evaluate the burden of geographic atrophy from each of these perspectives.
Dr Patel predicts that geographic atrophy will have a critical impact on the ageing society as a whole: “Geographic atrophy is going to be a large problem over the next 10-15 years as the population ages, and it’s important for us to better understand the impact of this disease on people’s quality of life.”
The results of the Burden of Illness study highlight the true impact and burden of the illness on social functioning and mental health, as well as the strain of the direct out-of-pocket costs that patients encounter whilst managing their disease.
“We looked at frequently reported topics such as reading ability, challenges with driving and getting around with public transport,” says Dr Patel, “but we found that patients also raised challenges with household chores like cooking or cleaning.”
As everyday activities such as household tasks, reading and driving become increasingly difficult due to loss of visual function and reduced mobility, these tasks often fall to a patient’s loved ones and, in some cases, require hired care. This loss of independence affects patients’ emotional well-being. Furthermore, the inability to drive or recognise faces severely impacts personal relationships and can lead to social isolation, leaving patients feeling frustrated and depressed.
It is devastating, heart-breaking, depressing to think that you can’t see.
“Patients shared how interactions with their family and friends were impacted. For example one patient was no longer able to play table tennis with her grandchild because of issues seeing the small white ball.”
Dr Patel also recalls how the interviews also unexpectedly revealed anxieties about personal appearance: “One of the things we hadn’t anticipated was how female patients became so self-conscious – they couldn’t apply make-up because they couldn’t see their face in the mirror.”
The Burden of Illness study also investigates the financial burden that geographic atrophy places upon patients. Expenses for a range of vision aids (flashlights, magnifying glasses, talking computers, etc.) often fall to the patient and their family, and represent significant costs.
Not being able to read is the one thing that is going to hurt me the worst.
More robust burden of illness studies are currently being conducted to further understand the financial, social and emotional burden of geographic atrophy on patients, caregivers and society. These studies will offer new insights and deliver quantified data that will help close the gaps in our understanding of the burden of this terrible disease.
What is geographic atrophy?
Geographic atrophy is characterised by the progressive, irreversible death of cells in the retina (light sensitive tissue at the back of the eye). This results in blind spots, affecting people’s visual function and resulting in a reduced ability to see.
In imaging, these blind spots show up as pale patches, because dead retina cells lose their dark melanin pigment, as shown in the images below.