ARVO 2024: Taking stock of patients' nAMD experience using an activity inventory

Ahead of this year's ARVO meeting, the Eye Care Network team spoke to presenters about the research findings they planned to share at the conference. In this video, we hear from Antonio Filipe Macedo, OD, MSc, PhD, Professor of Optometry in the Department of Medicine and Optometry at Linnaeus University, Växjö, Sweden. He talked about his recent research in neovascular age-related macular degeneration (nAMD) and highlighted his key takeaways for practitioners to use this information in a real-world setting.

Editor's note: This transcript has been lightly edited for clarity.

Hattie Hayes: Hi, my name is Hattie Hayes. I'm the editor of Ophthalmology Times Europe. The annual ARVO meeting is in Seattle this year, and we are speaking to a number of the attendees about what they're going to be presenting at the meeting, what they're looking forward to, and what we can expect from the research. Joining me today is Professor Antonio Macedo. We're going to be discussing his presentation, Vision-related activity difficulties in people diagnosed with neovascular age-related macular degeneration and with vision impairment. Thank you so much for joining me here today. It's wonderful to speak with you about your presentation.

Antonio Filipe Macedo: It's a great pleasure.

HH: So, to start off, just give me a brief overview of the research that you're going to be presenting at the ARVO meeting.

AM: Well this presentation is part of a bigger project that we are conducting here in Sweden. Basically looking at the burden of neovascular AMD and burden, by burden we include the burden of the treatment, the burden of the disease itself, and this my specific presentation in ARVO is actually presenting results ofactivity inventory that has been generously provided by a friend in Johns Hopkins. He developed [it] there, and we tested [it] in this patient population. There is there is a lack of good outcomes in neovasculat AMD, because the disease has been- the panorama of the disease has been changing, and the treatments start early, and what happened during this process was a lot of other instruments have been adopted and use it. And I think, for example, in Sweden, there has been 2 instruments for capture[ing] the difficulties, which I think could be better. So this new instrument or this version of the instrument is to test if our instrument can give us better outcomes in terms of our the reported problems correlate with the clinical scenarios.

HH: All of the doctors I talked to really value having that real-world data and understanding of how it impacts the patient's day-to-day life. Can you tell me a little bit more about the different daily activities you were assessing? Where they near vision related distance vision was there a mix? Tell me a little bit of what that that activity inventory is made up of.

AM: The activity inventory is based on a comprehensive set of activities and that includes a near near vision activities, recreation, ordinary hygiene and grooming activities. So, it is made of 50 goals of things that we do, based on vision that can include preparing food or reading timetables for the public transport. So, the patients decide if that goal is important or not for their daily life, and then they report their difficulties on that item. So, since it's quite comprehensive, some patients might not be interested in certain activities, so we don't create noise in our outcomes by including answers to items that people don't value. For example, we may ask about playing board games, but the person might not be interested in board games. So vision is not affected or, even if vision is affected, this is not going to affect the way the person plays chess, for example.

HH: Now, is there anything in this research that you found surprising, or do you think that there's anything in your presentation that might surprise your colleagues who are seeing it for the first time at ARVO?

AM: One thing that we noticed was there was quite a significant proportion of patients reporting near difficulties, and I think [that] is mostly because the patients that are on the treatment for neovascular AMD get much attention to their distance vision, as well monitor every injection or every checkpoint. But, we noticed that a few, or not so few, were actually having, struggling with near activities because they haven't been corrected for near. The correction was not optimal. In parallel with this activity inventory we conducted, we gave them another instrument, which is perceived stressed. Perceived stress because we wanted to understand if the going to the hospital receive an injection in the eye was causing stress, and those patients with difficulties near that were not corrected and could be corrected, because the distance vision was good. We're actually more stressed also. So I think, if I can say something, is we shouldn't neglect the near vision of patients on the treatment for neovascular AMD because they need to perform their daily tasks at near, and they are not being sent to, for example, low vision screening or low vision, which they should, sometimes.

HH: How do you hope that the doctors who attend your presentation at ARVO will take this knowledge into their offices? How do you hope that this research could impact patient counseling, for example?

AM: So I think the first message is, or one of the messages, is this: make sure that patients also are corrected for near vision, because maybe this patients are not so interested in driving a car every day, but maybe they do appreciate to be able to read their book or to be independent in their daily activities. So I think that would be, or is, the message that I would like to leave, because I think from a clinical perspective, we tend to be interested in clinical measures like acuity and so on, but these patient-reported measures give us a slightly different perspective, which is "how my vision meets my demands" from the patient's side. So, what we see here is that patients' dissatisfaction with vision is not necessarily correlated with how much they see at distance. So, there is a need to listen more to the patient and what they would like to do with their vision and eventually send the patient to other, for example, rehabilitation services when necessary.

HH: That's great. That's a great takeaway. What are you most looking forward to at this year's ARVO meeting?

AM: I love ARVO. For me [it] is THE conference, and that is reason enough to be there, and to travel over the ocean to be there. But, I think this year is going to be slightly special because I'm going to organise the professors’ party. So I'm going to meet my friends from different parts of the world, in particular from England and France, and we are going to have a cozy party, because I recently became a professor. So, I'm going to offer them maybe a glass of champagne for that. So, that the my moment.

HH: Well congratulations, Professor Macedo–and I'll forward those invitations to your party to everybody I know who's going to be there. Wonderful. Wonderful. Thank you so much.