Significant burden of treatment for patients with AMD

A new report has revealed a high level of anxiety in patients undergoing treatment for the nation’s biggest cause of blindness.

More than half of the respondents to a survey, conducted by national sight loss charity the Macular Society, said they experienced ongoing anxiety about their treatment for ‘wet’ age-related macular degeneration (AMD) – regardless of how long they had been receiving it for.

Of the 456 respondents currently receiving treatment, 55% admitted to feeling anxious ‘always’ or ‘some of the time’ beforehand. However, the feelings of anxiety did not change according to how long they had been receiving their treatments – with half of the respondents undergoing treatment for more than three years.

The aim of the research was to gain a better understanding the burden of the current treatment for patients with the ‘wet’ AMD. The treatment, given in the form of anti-VEGF injections into the eye, aims to slow the progression of the disease.

‘Wet’ AMD mainly affects those over the age of 55 and means regular visits to hospital, every four to eight weeks in order to prevent sight loss.

According to the Macular Society fear and anxiety due to intravitreal injections is common, especially at the beginning of treatment. Research has looked into the reasons why patients have anxiety, and ways to reduce it. However, the report notes that suffering with ongoing anxiety is notable, as it goes against the belief that over time patients are likely to become less anxious, as they become accustomed to frequent injections. As one patient said: “I worry about the future and each visit I worry about losing more of my vision”.

The report also highlights the associated burden of treatment, as two thirds of the respondents said they rely on family or friends to take them to and from their regular eye clinic appointments. They also admitted to needing their family or friends to spend anywhere between one to three hours helping them during their appointment, with one patient saying:
“My daughters both live a distance from me so a whole day is needed … for every appointment. So this impacts considerably on family life for them as well as me”.

The report comes as a new treatment for wet AMD, Beovu (brolucizumab), is currently being assessed by NICE for its clinical and cost effectiveness. If successful, Beovu will help to reduce the burden of treatment as patients may only require injections every three months.

This week Beovu has been approved by the Scottish Medicines Consortium (SMC) for NHS patients in Scotland.

Cathy Yelf, chief executive of the Macular Society, said: “Even though patients and healthcare providers are trying their best, we know the burden and the associated burden of treatment for wet AMD is high.

“Through new advances in wet AMD treatment allowing for longer intervals between treatments, we hope that some of the burden for both patients and clinicians will be reduced.”

Geraldine Hoad, research manager at the Macular Society, said: “This survey was a timely reminder of the extent to which treatment for wet AMD impacts on patients and their friends and families. We’d like to thank all those who took the time to help us understand their experience of attending eye clinics for injections.

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Notes to editors:

Every day, around 300 people are diagnosed with macular disease. It’s the biggest cause of sight loss in the UK. Macular disease is cruel and isolating. It steals your sight, your independence, and your ability to do the things you love.

It can affect people of any age – even children – but not enough is known about why, and there is still no cure. There is only one way to Beat Macular Disease for good. We must fund much more research now, until we find a cure, or find treatments that stop it in its tracks.

Together we can fund the research that will find the cure. Together we can make sure the next generation won’t have their sight, confidence, and love of life stolen from them by macular disease.

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