To the best of our knowledge, this is the first study that incorporated the NGT method to generate consensus from patient leaders regarding the challenges faced by patients living with GA and treatment expectations of current and potential therapies of GA. The items generated by the group were consistent with what was generated via the literature review and patient surveys. A final list of 37 items for impact and 21 items for treatment expectations were generated. The top 10 items ranked by the patient leaders can help clinicians, researchers and policy makers to prioritise areas of impact in AMD such as developing endpoints that reflect matter most to patients or providing support where these is the most impact.
Impact of GA:
The biggest challenge identified by the group was losing independence and relying on others for daily activities, appointments, shopping and several daily living activities. These findings highlight that patient value their independence as a top priority. This also implies that interventions and treatments for AMD should focus not just on improving clinical measures of vision, but on maintaining and enhancing patients' ability to perform daily activities independently. Some of the strategies to address this challenge could be:
- Developing assistive technologies that help patients navigate their environment without assistance.
- Designing rehabilitation skills that are needed for independent living
- Prioritizing research on treatments that slow or prevent progression of the disease so that patients can maintain independence for as long as possible.
- Enhancing public spaces and transportation systems to be more accessible to those with visual impairments.
- Including measures of independence and quality of life (PROMs) into clinical trials in GA.
Patient leaders ranked recognizing faces as the second biggest challenge among patients with GA. Several studies in the literature have reported that patients with advanced AMD have difficulty recognizing faces (10). Difficulty in facial recognition has been linked with limited social interaction and communication in visually impaired people as these individuals must rely more heavily on non-visual cues during social encounters (11). Similarly, impaired face perception has been found to be associated with poor quality of life in patients with AMD (12). This demonstrates the importance patients place on social interaction as a crucial component of their overall well-being. This emphasizes the urgent need for scientists, researchers and developers need to develop new tools, therapies and rehabilitation services that can allow people with visual impairment to recognize faces. While we wait for new therapeutic developments that allow people with GA regain their lost function, it is equally important to act on enhancing the well-being of those who are currently experiencing the disease and have impaired face recognition. Prior research has offered specific recommendations addressing the challenges of impaired face recognition, providing guidance for patients, caregivers, friends, and family on adapting to new visual limitations and enhancing social well-being (12). These strategies can help mitigate the social and emotional impact of facial recognition difficulties while more advanced solutions are being developed.
Other daily living activity items that were ranked in the top 10 include orientation and mobility, reading, cooking and watching TV. These all combinedly come under the impact on patient’s independence and can have far reaching implications. The inclusion of orientation and mobility in the top 10 highlights the profound effect vision loss can have on one’s independence and ability to navigate their environment safely (13, 14). This can lead to increased isolation and reduced participation in social activities, further contributing to mental health issues (15). Reading difficulties not only affect leisure and personal activities but can also hinder a person's ability to manage important tasks such as reading medication labels, bills, or confidential documents. Previous reviews have reported that reading is one of the most common valued activities to be lost as a result of AMD (16). The impact on cooking is noteworthy as it touches on both independence and nutrition. Difficulty in preparing meals may lead to reliance on others or a shift towards less healthy, pre-prepared food options, potentially affecting overall health and well-being (17, 18). The inclusion of watching TV among the top impacts underscores how GA affects not just essential tasks but also common leisure activities. This can significantly reduce quality of life and limit options for relaxation and entertainment, potentially exacerbating feelings of isolation and depression.
Depression and anxiety were also ranked within the top 10 impacts of GA. The issue of mental health disorders among people with AMD is well established in the literature (19–21). However, studies demonstrating the prevalence of mental health issues in GA are scarce. This study provides strong evidence that depression and anxiety are common among people living with GA. The occurrence of mental health issues in people with GA and in people with VI in general stems from a variety of factors. One of the main factors is the functional impairment and vision loss leading to decline in quality of life and hence the psychological issues (22, 23). Furthermore, previous studies have elicited that low level of physician-patient communication may lead to mental health issues among people with chronic diseases (24). This could be true in AMD as it has been found that there is a significantly low patient-clinician communication in AMD care (25, 26). Although some attempts have been made to address this burden by involving nurses and other staff in providing information about disease progression and impact, studies suggest that psychological support for visually impaired people is non-existent in the majority of eye care facilities at least in the UK (27). There is an urgent need to address this issue comprehensively. Healthcare providers should implement strategies to improve patient-clinician communication, offer regular mental health screenings, and integrate psychological support services into AMD care. Furthermore, developing support groups, providing access to counselling, and educating patients and their families about coping strategies could significantly improve the mental well-being of individuals living with GA.
Social isolation was also ranked as one of the top 10 impacts. The difficulty in facial recognition, previously discussed as a major impact, directly contributes to social isolation (12, 28). When individuals struggle to recognize friends, family members, or acquaintances, they may feel less confident in social situations, leading to withdrawal from social activities. This can result in a gradual erosion of social connections and support networks, which are crucial for mental health and overall well-being. Similarly, social isolation can be a result of depression as previous studies have demonstrated links been social isolation and depressive symptoms in people with visual impairment (29).
Worry about deterioration of the condition was also one of the top 10 impacts of GA as ranked by the patient leaders. As patients gradually start losing their vision, which is a case in GA, they become acutely aware of the importance of their remaining sight. This heightened appreciation for residual vision likely intensifies the fear of further loss, making each change in visual acuity more distressing. As vision loss occurs patients start adapting to the new level of functional vision which can be stressful. If there is rapid or more frequent alteration in vision, patients can be overwhelmed and do not have time to adapt to the new level of vision which leads to further stress and loss of confidence and hence causing further psychological issues.
Treatment expectations of GA therapies
The treatment expectations discussion and ranking revealed some really interesting insights into patient priorities. Patient leaders identified stability of vision as their foremost expectation from current and potential geographic atrophy (GA) therapies. This top ranking demonstrates well-informed patient leaders regarding GA's progressive nature and the mechanisms of existing treatments. It indicates a pragmatic desire for current therapies to halt disease progression. A previous podcast conducted in a patient with GA has also revealed that stability of vision is an acceptable outcome of GA therapies from a patient’s point of view (30). Other top 10 ranked items regarding the visual outcome were improvement in vision (5th ) and delaying further loss of vision (8th ). These rankings provide valuable guidance for researchers and clinicians, highlighting the need to focus on therapies that can effectively stabilize vision while also pursuing interventions that might restore or enhance visual function. Additionally, the emphasis on delaying vision loss suggests that patients value treatments that can slow the disease's progression, even if complete stabilization is not achievable. A previous case report study in a patient with GA reported that patients with GA consider a delay in progression of GA a valuable goal. The patient expressed willingness to tolerate potential discomfort, anxiety, and inconvenience from regular intravitreal injections if it meant preserving vision for an extended period (31).
The second highest ranked item was the ability to recognize faces. This finding closely aligns with most significant disease impact identified by patient leaders in the disease impact NGT discussion and ranking discussed earlier. This alignment demonstrates the critical importance of facial recognition to patients with geographic atrophy. Impaired face recognition in GA has been previously reported in the literature (10). The inclusion of face recognition in both impact and expectation rankings means two key things. First, it emphasizes the need to incorporate face recognition measures in GA clinical trials, ensuring that this crucial aspect of visual function is adequately assessed, and treatments are approved based on the improvement on real world activities rather than merely on the clinical improvement in vision. Second, it underscores the urgency of developing assistive technologies specifically designed to aid GA patients in recognizing faces. Several researchers and scientists are actively working on developing assistive devices for face perception in visually impaired individuals (32–34). Such innovations could significantly enhance social interactions and overall quality of life for those affected by the condition. Other daily living activities that patient leaders ranked in the top 10 treatment expectations were able to walk independently (7th ), able to read (9th ) and able to drive (10th ). These findings suggest that enhancing functional abilities that are critical for independence and social engagement is paramount for patients. Consequently, future research and therapeutic interventions should prioritize these areas to address the comprehensive needs of individuals with GA, ultimately aiming to improve their autonomy and overall well-being.
Patient leaders ranked one time therapy as the third highest ranked treatment expectation. This demonstrates that patient leaders are aware of the burden of frequent injections affecting patient and caregiver employment, loss of leisure time and economic impact. Moreover, frequent injections have been found to be one of the main reasons for non-adherence to AMD treatment and poor visual outcome in neovascular form of AMD (35). Several one-time therapeutic approaches are currently in development, including gene therapy (36), optogenetics (37), and stem cell therapy (38) for GA. These innovative treatments have shown promising results in early-stage clinical trials. We hope that larger, more advanced trials will confirm their efficacy, potentially leading to accessible treatments in the near future.
Patient leaders ranked oral therapy as their fourth highest expectation. While oral administration offers greater convenience from a patient perspective, intravitreal injections provide good drug bioavailability in the retina and vitreous, minimal invasiveness, less systemic toxicity and the need for a relatively lower dose resulting in more rapid and effective disease management (39). Notably, intravitreal injection also appeared among the top 10 treatment expectations, suggesting that patients generally accept this current delivery method despite its invasive nature. Furthermore, previous studies suggest that patients with GA are willing to take intravitreal injections as long as they can maintain their vision or delay disease progression (40).
There are a few limitations to this study. First, we had to conduct some steps of the Nominal Group Technique (NGT), particularly the ranking process, online rather than in-person as initially planned due to time constraints and the need for special assistance for visually impaired patient leaders. However, we are confident that the findings of our study are valid as various NGT method modifications are accepted in research (8, 41), and numerous studies have successfully employed and published results using modified NGT approaches (42). Second, we included patient leaders who have had several years of experience in retinal disease patient advocacy but did not have the lived experience of GA themselves. This may have influenced some of the priorities and rankings but given the fact that these patients leaders regularly interact and speak on behalf of patients living with retinal degenerations, we are confident that their insights closely reflect those of individuals living with the condition.