Geographic atrophy is one of the advanced progressive stages of Age-Related Macular Degeneration (AMD) and leads to a gradual loss of central vision. Patients receiving this dramatic diagnosis must, therefore, deal with the debilitating effects of progressive vision loss, which has a profound impact on their self-sufficiency in daily life, their emotional well-being and their quality of life in general.
Geographic atrophy is a serious visual problem globally and one of the most frequent causes of legal blindness in developed countries. Diagnosed cases of geographic atrophy number around 5 million worldwide today and could double to 10 million by 2040.
This severe form of maculopathy is characterised by the progressive death of retinal pigment epithelium (EPR) cells and macular photoreceptors and the loss of portions of the choriocapillaris. These changes result in atrophic areas that are clearly detectable on retinal imaging and, in cases where the area of the central fovea is also affected, lead to severe impairment of visual function. This macular damage begins in the form of small areolae that then develop into larger areas.
Symptomatically, a person with early-stage geographic atrophy may experience problems with reading or night vision. If the disease progresses to advanced stages, permanent blind spots (scotomas) will develop in the centre of the visual field.
Vision loss caused by geographic atrophy is a challenge for both clinicians and patients, whose subjective perceptions were the focus of the largest survey to date, published in December 2024, Characterising Patient Perceptions of Living with Geographic Atrophy: The Global Geographic Atrophy Insights Survey.
To reconstruct the experience of living with geographic atrophy, a team of researchers collected responses from 203 patients with an average age of 70 years, diagnosed with geographic atrophy, living in Canada, Australia, the United States and six European countries (United Kingdom, France, Germany, Italy, the Netherlands and Sweden).
The survey results highlight the need to provide patients with better information and detailed educational material on the progression of their disease and how to cope with the associated visual decline.
The first parameter that was assessed was the impact of geographic atrophy on patients' independence. Many of the respondents report a marked reduction in their ability to perform daily activities and state that they have had to eliminate certain activities from their normal routine. Driving a car is one of the most severely impaired activities: 70% of the respondents state that they had to reduce or give up driving a car altogether. This limitation, which is particularly acute in low-light conditions, significantly reduces the possibility of travelling and getting around independently. In parallel, it implies an increased burden on caregivers, as patients with geographic atrophy develop the need for assistance in travelling. With regard to hobbies, 43% experienced a severe or significant negative impact on the possibility of taking up a new hobby and 37% gave up or reduced the time spent on their previous hobbies. These outcomes tend to exacerbate the sense of isolation and loss of identity.
Also of great importance is the impact on emotional and psychological balance, as most patients report states of anxiety, depression and social isolation. The progressive nature of the visual loss and the uncertainty as to the degree of future progression contribute to making these emotional conditions worse, as the patient has to face the reality of an irreversible condition, for which few therapies exist, although some hope comes from the latest therapeutic advances and the contribution of artificial intelligence in the diagnosis and treatment of geographic atrophy (see Geographical Atrophy & AI - Italian Ophthalmologist)
Patients with geographic atrophy report feeling a sense of frustration, hopelessness and profound sadness, which impacts on their mental health. In particular, they say they experience a sense of loss of their ability to participate in social life and engage in meaningful relationships, which adds to their severe visual impairment, an overall condition of alienation.
As the atrophy progresses, many patients become increasingly dependent on caregivers, who in 94% of cases are family members or friends. This outcome underlines the increasing social burden of this disabling maculopathy. The researchers observed that caregivers, who provide essential support for travel, meal preparation and other daily tasks, themselves experience a great deal of stress, which causes physical and emotional exhaustion and can have an impact on their nervous balance. This must be properly assessed and managed by our welfare systems, first and foremost the National Health Service.
The survey also investigated the differences between patients with unilateral disease and those with bilateral atrophy. In general, the impact on the quality of life of both types of patients is very severe, but those with unilateral atrophy particularly emphasise the negative effects on relationships with other family members, friends and close acquaintances. This somewhat surprising result, as one would expect the condition of patients with bilateral atrophy to be emotionally worse, is partly explained by the fact that patients with unilateral atrophy have to deal for the first time with an abrupt visual decline affecting their better-seeing eye. Patients with bilateral visual atrophy generally experience a more gradual visual loss, which ensures a more prolonged period of acceptance, allowing the patient to develop a sense of self-control and adaptation to the consequences of progressive visual loss.
On this topic see also
- Hereditary maculopathies: genes & C - Oculista Italiano
- Geographical atrophy & AI - Oculist Italiano
- Bakri SJ, Brinkmann CK, Mulvey A, et al. Characterizing Patient Perceptions of Living with Geographic Atrophy: The Global Geographic Atrophy Insights Survey. Clin Ophthalmol. 2024;18:3725-3737. Published December 13, 2024. Accessed December 13, 2024. https://doi.org/10.2147/OPTH.S488559
- Krogh Nielsen M, Hinnerskov JMV, Sorensen TL. Geographic atrophy - Signs, symptoms, and quality of life. Acta Ophthalmol. 2023;101(8):896–902. doi:10.1111/aos.15794
- Madheswaran G, Ramesh SV, Pardhan S, Sapkota R, Raman R. Impact of living with a bilateral central vision loss due to geographic atrophy-qualitative study. BMJ Open. 2021;11(7):e047861. doi:10.1136/bmjopen-2020-047861
- Patel PJ, Ziemssen F, Ng E, et al. Burden of illness in geographic atrophy: a study of vision-related quality of life and health care resource use. Clin Ophthalmol. 2020;14:15–28. doi:10.2147/OPTH.S226425
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