How innovation can help ease the devastating impact of macular disease
In the first of our new series on improving care for people with long-term health conditions, Dods Impact and AbbVie explore how improving Digital and Virtual Outpatient Services can help the 1.5 million people losing their sight as a result of macular disease
The macula is part of the retina at the back of the eye, responsible for our central vision. Diseases of the macular are a growing UK public health crisis, resulting in sight loss for 1.5 million people.
Although often associated with older people, macular diseases can affect people of all ages. One particular group that is impacted is people living with diabetes. In the UK, 300,000 people experience Diabetic Macular Oedema (DMO). Without treatment, it is estimated that half of these patients will experience significant sight loss within 2 years.
“Macular disease is cruel and isolating,” explains Cathy Yelf, Chief Executive of the Macular Society. “Day-to-day we hear from people about the devastating impact it has on their lives, often leaving them unable to read, drive, or even recognise the faces of their closest friends.”
Marsha de Cordova MP, who Chairs the Eye Health and Visual Impairment APPG, lives with a long-term eye condition herself and is a long-time campaigner for better eye health. She says that the impact of macular disease can be “distressing and frightening” for patients.
“The impacts can be devastating,” de Cordova tells us. “Losing the ability to participate in the same work, hobbies, and social activities can be difficult adapting to and can put an immense strain on an individual’s emotional and mental well-being.”
This challenge does not just affect individual patients who face sight loss. It also applies to the wider NHS itself. Rising incidence of macular disease means that ophthalmology has become the biggest outpatient specialist service in the NHS, at a cost of £2.6 billion each year.
“With an ageing population and a rising incidence of diabetes, we face a crisis in how we care for those who are at risk of developing macular disease,” Belinda Byrne PhD, UK Medical Director from biopharmaceutical company AbbVie tells us. “Once it develops, macular disease can be incurable and in some cases not even treatable. Finding new ways to prevent or delay disease onset will deliver better outcomes for patients and significant savings to the NHS.”
The need for urgent action was drawn into focus during the recent lockdown when many patients had their eyecare disrupted.
A diagnosis can be incredibly distressing and frightening…It can put an immense strain on an individual’s emotional and mental well-being
“Changes in hospital services for patients experiencing macular disease meant thousands of people missed or cancelled their eye appointments,” explains Yelf. “These appointments are vital for people to retain their vision and many people suffered permanent sight loss as a result.”
A new report commissioned and funded by AbbVie has now revealed the sheer scale of the impact of the pandemic on those with macular disease. It found that during the Covid period there were big falls in the number of patients accessing ophthalmology services. The analysis, which was carried out by health research consultancy Carnell Farrar, indicates that referrals fell to around 10% of pre-pandemic levels, whilst outpatient appointments dropped by 77%. This has led to the waiting list for initial eye-health appointments growing to over 600,000 people.
Marsha de Cordova believes that, as we emerge from the pandemic, new approaches are needed to help tackle the backlog that exists for those with degenerative eye conditions.
“It is estimated that 22 people a month are losing their sight due to the lengthy delays in treatment,” de Cordova explains. “Unless action is taken to address this backlog, the situation will only continue to get worse with many missing out on vital treatment.”
The need to focus capacity on preventable sight loss is one of the key aims of the recent Eyecare Recovery and Transformation Plan. That plan seeks to reduce outpatient numbers through digitally supported community-based approaches and the use of new innovative medicines. These approaches can free up consultant capacity and reduce delays for patients, minimizing avoidable sight loss that results from patients not being seen on time.
Marsha de Cordova believes that approaches such as this will be key to improving care pathways for patients with macular disease and reducing the need for unnecessary hospital visits.
“There needs to be more government investment in this area of healthcare, and with advances in research and clinical technology, a shift towards this way of monitoring diseases must be made,” she tells us. “We need the government to make looking into digital outpatient services a priority, and to improve the current access to resources, logistics and research to effectively make this happen.”
AbbVie’s Belinda Byrne agrees that part of the solution to macular disease could lie with new treatments and technologies. She would like to see those solutions developed now to meet the challenges that we know the nation will face in future decades.
“The number of people living with a diagnosis of diabetes has doubled in the last 20 years and is continuing to rise,” she tells us. “Combined with an ageing population, this means macular disease is set to become an even bigger public health challenge. Digital and virtual services alongside innovative new medicines could be transformative in delivering better outcomes for people who are living with these devastating conditions.”
How a Smartphone App is Helping Patients Monitor Their Vision
Patients with macular degeneration have traditionally had to attend regular in-person appointments.
This is not always easy. Deteriorating sight often means that driving or travelling by public transport is difficult. Face to face appointments are also costly and time consuming for clinicians, placing a strain on limited NHS capacity.
A different approach has recently been piloted by Moorfields Eye Hospital in London. They have been testing a smartphone app called Home Vision Monitor.
The app has been specifically designed for people with macular degeneration. It is proving successful in helping patients continue to have their vision monitored whilst in the comfort of their home.
Using the new smartphone app patients test their vision at least twice a week. Results are then instantly shared with their clinician at Moorfields Eye Hospital. If tests reveal any deterioration in the patient’s eye health, an alert is automatically triggered to their clinician. This enables the clinician to decide on the correct course of action, helping them intervene at an early stage of disease progression and providing patients with the possibility of a better outcome.
Rachel, a 78 year old patient with MD is a fan of the new system. “Being able to use my phone at home to monitor my eyes has been great,” she says. “It’s good to know that the data in the app goes to my team at Moorfields and that they can see any changes in my vision before I come in so I don’t have to explain it all. Everyone has been so helpful and my eyes feel much better now.”
This case study is not connected to AbbVie in any way and has been provided by Dods Impact
This article and the Carnall Farrar report has been commissioned and funded by AbbVie. This article is intended for UK parliamentarians.
Date of Preparation: June 2022 Job No: UK-ABBV-220311
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