Survey better understands patient experiences of macular treatment

A survey to better understand the perceptions of patients receiving anti-VEGF injections for macular conditions has highlighted the positive experiences of care, but also the need to involve patients in decisions about their treatment.

The survey, conducted by the Macular Society, looked at feedback from 827 patients who currently receive, or have previously received, anti-VEGF injections and how they feel about their treatment.

The research, conducted by the Macular Society between September and December 2024, surveyed patients with conditions such as wet age-related macular degeneration (AMD), diabetic macular oedema (DMO), and retinal vein occlusion (RVO) and more.  

Contact with consultant

Only around half of respondents said their ophthalmologist actively involved them in decisions about their treatment and 12% said they had no opportunity to speak to a consultant at all.

Nearly one in five patients did not know which drug they were currently receiving and among those who had stopped treatment, one in five were given no explanation, with some only discovering they had been discharged after chasing their next appointment.

One patient said: “I couldn’t have been happier about the treatment I received until I was discharged. I wasn’t even told. I kept waiting for my next appointment to arrive through the post and it never did. I eventually rang and told them I was concerned I hadn’t received an appointment. They looked on the computer and told me I had been discharged. That was how I found out. I’m not happy at all. I really would like regular screening.”

Details of treatment

Many participants were grateful to staff for their care, and the treatment for stabilising their vision loss. However, several did not feel involved in their care with only 15% of participants being told the reason why they have been switched to a different drug.

The biggest hope for improvement from patients (36%) was a treatment option that did not involve an injection, such as eye drops or a tablet, followed by a treatment that won’t just slow the progression of their condition, but restore or improve their sight.

Peter Bloomfield, director of research at the Macular Society, said: “Starting intravitreal injections is a significant step for someone receiving care for an eye condition.

"At times this can be a sudden change, and while it is vital to start treatment as soon as possible, clear communication and ensuring people fully understand their treatment is crucial. Without this people are unable to plan their lives and adapt to the change. This isn't just about starting a treatment regime, switching between treatments and stopping treatment similarly need much more attention. Throughout this journey consistent, clear communication is needed.

“We hope this report will help highlight the importance of these conversations with patients and encourage greater patient involvement in eye care.”

Thank you to Bayer for supporting this research. As per our policy, they have no influence over the report’s content.