The human impact of geographic atrophy: Survey explores experiences and perceptions of patients living with GA

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Geographic atrophy (GA), a progressive form of age-related macular degeneration (AMD), is a condition that causes irreversible damage to the retina, leading to the gradual loss of central vision. Patients diagnosed with GA must contend with the debilitating effects of this vision loss, which can profoundly impact their daily lives, emotional well-being, and overall quality of life (QoL).

As the leading cause of untreatable vision loss in the elderly, GA presents unique challenges for clinicians and patients alike. A recent global survey, which represents the largest of its kind to date, provides a comprehensive look at the prevalence and impact of GA-related experiences, offering valuable insights into the lives of those affected by the disease. This article examines the findings of the survey, discusses its implications, and emphasizes the need for improved education and care strategies for individuals with GA.

To assess the experiences of living with GA, a team of researchers conducted the Geographic Atrophy Insights Survey (GAINS) between October 12, 2021, and December 10, 2021, captured the responses of individuals ≥ 60 years with a self-reported GA diagnosis residing in the United States, Canada, Australia, and 6 European countries.¹

“The findings from this survey exemplify the many impacts that GA-related visual decline has on the lives of individuals, the need for improved educational materials related to GA, and the experiences of interacting with clinicians,” the researchers wrote. “Importantly, our results demonstrate many similarities exist in the responses of individuals with unilateral and bilateral GA, indicating that the impact of GA on a person’s life is similar, in some aspects, regardless of whether only 1 eye is affected from this disease.”

Survey overview and methodology

The survey in question aimed to explore the perceptions and experiences of individuals living with GA, focusing on the impact of the disease on their daily lives, emotional health, and interactions with healthcare professionals. Notably, the survey was conducted before the regulatory approval of any GA-specific treatments, so its results reflect the realities faced by individuals when no treatment options were available. By capturing the experiences of individuals with both unilateral and bilateral GA, the survey provides a nuanced view of how the disease affects patients, regardless of the number of eyes affected.

The survey revealed several key trends and commonalities between patients with unilateral and bilateral GA, illustrating the profound toll that GA takes on individuals’ lives. Despite the differences in the number of eyes affected, many respondents with both forms of GA reported similar negative impacts on their independence, mental health, and social relationships.

GA and the impact on independence

One of the most significant findings of the survey was the impact of GA on patients’ independence. Vision loss in individuals with GA typically leads to a marked decrease in their ability to perform daily activities, and many respondents reported having to reduce or eliminate certain activities from their routines.

Researchers found that driving was one area where GA patients experienced the most notable limitations, and 70% of respondents reported giving up or reducing their time spent driving at night due to vision difficulties. This limitation, particularly when it comes to driving in low-light conditions, underscores the impact of GA on a patient’s ability to navigate the world independently. The loss of independence in activities such as driving not only restricts mobility but also places a significant burden on caregivers, as individuals with GA may require assistance with transportation.

In addition to driving, hobbies and other personal activities were also impacted by GA. The survey found that 43% of participants experienced major or moderate negative impacts on their ability to engage in hobbies, with 37% of respondents reporting that they had given up or reduced time spent pursuing these activities. These findings underscore the profound effect that GA can have on an individual’s sense of self and ability to engage in leisure activities, further exacerbating feelings of isolation and loss of identity.

The emotional and psychological toll of GA

GA's impact is not limited to physical limitations; the disease also takes a heavy toll on the emotional well-being of those affected. The survey found that both unilateral and bilateral GA patients reported similar emotional challenges, with many experiencing anxiety, depression and social withdrawal. The gradual loss of vision and the uncertainty surrounding disease progression contribute to these emotional struggles, as individuals face the reality of an irreversible condition with no current cure.¹

Patients with GA often report feelings of frustration, helplessness, and sadness as their vision deteriorates, leading to negative impacts on their mental health. In particular, many individuals reported feeling a sense of loss over their ability to participate in social activities or engage with their loved ones in meaningful ways. This emotional strain can be compounded by the frustration of not being able to adequately express the extent of their visual impairment to others, leading to a sense of alienation.

The role of caregivers in GA management

As GA progresses, the researchers noted that many patients become increasingly reliant on caregivers for daily support. The survey revealed that 54% of respondents with GA depended on caregivers, and 94% of these caregivers were family members or friends providing informal support. The need for caregiver assistance highlights the growing burden on individuals and families affected by GA. In many cases, caregivers take on the responsibility of helping patients with tasks such as transportation, meal preparation, and managing daily routines.

The researchers noted that while caregiving provides essential support, it also places a strain on those who take on these roles. Caregivers themselves often experience physical and emotional exhaustion, and the demands of caregiving can negatively affect their own mental health. As the patient population for GA continues to grow, it will be essential for healthcare systems to recognize the needs of both patients and caregivers and provide adequate support to mitigate the impact of caregiving.

Similarities and differences between unilateral and bilateral GA

The survey also explored the differences between patients with unilateral and bilateral GA. While respondents with bilateral GA were more likely to experience certain symptoms and challenges than those with unilateral GA, the study found that the overall impact on QoL was largely similar between the two groups.

Interestingly, the survey revealed that unilateral GA patients reported more significant negative impacts on their relationships with family members, friends, and significant others. This finding is somewhat unexpected, given that one might assume patients with bilateral GA would experience greater challenges due to the loss of vision in both eyes. However, it is possible that the difference in responses between the two groups is related to the quality of vision in the better-seeing eye and the timing of visual decline. Patients with unilateral GA may experience a more abrupt or noticeable decline in their vision as their better-seeing eye is affected, which could lead to greater emotional strain and relationship challenges.

In contrast, respondents with bilateral GA often reported noticing their vision decline earlier in the disease progression, which may allow for a longer period of adjustment to the visual changes. The gradual nature of vision loss in bilateral GA patients may also provide them with a sense of control, even as their vision deteriorates. Future research is needed to better understand the underlying reasons for these differences and to explore how the timing and severity of visual decline influence patients' experiences with GA.

Education and awareness

One of the most pressing findings of the survey was the need for improved education regarding GA. Many individuals with GA reported receiving insufficient information following their diagnosis, with much of their knowledge coming from family members or friends. Inadequate communication from healthcare providers about the nature of the disease, its progression, and available resources can lead to misunderstandings and unrealistic expectations.

The survey also revealed that many individuals living with GA misunderstood their diagnosis and the progression of the disease. A common misconception was that GA-related visual decline would occur more slowly than anticipated. While GA is often described as a slow-progressing condition, individuals living with the disease may perceive their vision loss as more rapid, which could contribute to heightened anxiety and emotional distress. Misunderstandings about the disease can also lead patients to believe that their vision loss is a natural part of aging, rather than a disease that requires management and attention.

Given these findings, it is critical that education about GA be prioritized in the clinical setting. Healthcare providers should take the time to thoroughly explain the nature of the disease, discuss the potential for treatment options (once available), and provide clear guidance on managing the impact of vision loss. Better education will help empower patients to make informed decisions and manage the emotional and psychological toll of living with GA.

Conclusion

The findings of this global survey, according to the researchers, provide valuable insights into the lived experiences of individuals with GA, highlighting the profound impact of the disease on patients’ daily lives, emotional well-being, and independence. The results underscore the importance of recognizing the unique challenges faced by individuals with GA and the need for tailored support and educational resources.

“As clinicians, it is crucial to recognize that GA affects not only the patient’s vision but also their quality of life in ways that may not always be apparent in traditional clinical assessments,” the researchers wrote. “By acknowledging the emotional and psychological impact of the disease, healthcare providers can better support patients in managing their condition and improving their overall well-being.”

The researchers noted that as treatment options for GA continue to develop, it is important that clinicians remain informed about the evolving landscape of GA management and continue to advocate for the needs of those living with the disease. They added that a more patient-centered approach, with a focus on education, emotional support, and early intervention, can help improve outcomes for individuals affected by this devastating condition.

“Future research exploring factors associated with the varying perceived degrees of impact of GA may be a useful area of future research to better understand patient needs,” the researchers concluded. “Overall, our findings provide greater insight into the burden of this disease so that clinicians and patients can better navigate and manage GA.”

Reference

1. Bakri SJ, Brinkmann CK, Mulvey A, Steinberg K, Katz R, Vatsyayan P, Sarda SP, Holekamp NM. 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