A new study from City, University of London suggests that effective communication from eye health professionals may help reduce patient fears after they are diagnosed with the ‘dry’ form of age-related macular degeneration (AMD).
Dry AMD is a currently incurable, progressive disease of the macular, the central part of the retina through which we see the world directly in front of us.
AMD is responsible for 50% of severe sight impairment registrations in England and Wales1, and there are currently an estimated 1.5m people in the UK with sight loss caused by some form of macular disease, with dry AMD the most common form2.
The number of people with AMD is set to rise as the world’s population both increases and ages; 196 million people worldwide are predicted to be affected by 2020 and 288 million by 20403.
Whilst the progressive sight loss from dry AMD does not generally lead to complete blindness, it can make recognising faces and everyday activities like reading, watching television, and driving difficult. Symptoms may begin as a blurring or distortion of the central vision, and lead to a complete blind spot (scotoma) of the central vision.
The onset of dry AMD may not be accompanied by symptoms, and may be diagnosed as part of a routine eye check by an optometrist or other health professional.
The new study involved 27 participants at various stages of dry AMD progression, who received an eye examination and then took part in a semi-structured interview to gauge the impact their diagnosis and symptoms had on their lives in the short and longer term. A ‘framework’ analysis was used to capture key themes, and issues from participants to inform recommendations.
These patients reported a range of responses, including how they reacted to being diagnosed with dry AMD as an incurable condition.
One patient reported:
“At the end of the day he just said you’ve got dry macular degeneration, end of story and that’s how he put it; end of story. So I said to him, what do you mean end of story? He said well that’s it, there’s nothing we can do, there’s no cure for it so there’s nothing we can recommend you do, which is quite a big shock.”
With another commenting:
“I don’t hold out a lot of hope, although I do have a little spark that maybe something can be done eventually about it.”
Other recommendations made by the study include standardising the rehabilitation pathways across the eye care sector, which could include referral to an Eye Clinic Liaison Officer (ECLO) to discuss information about dry AMD, and to refer patients to other relevant support services.
David Crabb, Professor of Statistics and Vision Research at City, University of London, who led the research team, said:
“What I learned from the research is that there are many people diagnosed with dry AMD who perceive the impact of the condition on their daily life as considerable, whilst their measurable visual function remains reasonable. Many fear going blind, and suffer a great deal of anxiety, particularly with the current lack of a treatment for the condition.
“Much of this distress might be allayed through more supportive conversations with their eye health professionals, and receiving timely information about the disease and outcomes, and referral to any further necessary support.”
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Media enquiries:
To speak to Professor David Crabb, first author of the study Dr Deanna Taylor, or for a copy of the study, please contact either:
Shamim Quadir, Senior Communications Officer, City, University of London
T: +44 (0) 207 040 8782 E: shamim.quadir@city.ac.uk
Sophie Cubbin, PR & Communications Manager, City, University of London
T: +44 (0) 207 040 8734 M: +44 (0) 7817 037 919 E: sophie.cubbin.1@city.ac.uk
Notes to editors:
References:
1. Quartilho, A., Simkiss, P., Zekite, A., Xing, W., Wormald, R. and Bunce, C., 2016. Leading causes of certifiable visual loss in England and Wales during the year ending 31 March 2013. Eye, 30(4), p.602.
2. Owen, C.G., Jarrar, Z., Wormald, R., Cook, D.G., Fletcher, A.E. and Rudnicka, A.R., 2012. The estimated prevalence and incidence of late stage age related macular degeneration in the UK. British Journal of Ophthalmology, 96(5), pp.752-756.
3. Wong, W.L., Su, X., Li, X., Cheung, C.M.G., Klein, R., Cheng, C.Y. and Wong, T.Y., 2014. Global prevalence of age-related macular degeneration and disease burden projection for 2020 and 2040: a systematic review and meta-analysis. The Lancet Global Health, 2(2), pp.e106-e116.
A two minute 12 second youtube video of Professor David Crabb and first author Dr Deanna Taylor explaining what macular disease is and the research study can be found here:
https:/
It is currently Macular Week (24-30 June, 2019) the purpose of which is to raise awareness of diseases of the macular. Please visit the Macular Society (in the UK) for more information: https:/
Find out more about the Crabb Lab’s research here: //www.
About City, University of London
City, University of London is a global institution committed to academic excellence, with a focus on business and the professions and an enviable central London location.
It is the top higher education institution in London for student satisfaction (The Complete University Guide), is ranked 18th overall in the United Kingdom (Guardian University Guide) and is among the top five per cent of universities in the world (Times Higher Education World Rankings).
City has around 19,500 students (46% at postgraduate level) from more than 150 countries and staff from over 75 countries. More than 130,000 former students from over 180 countries are members of the City Alumni Network. City’s academic range is broadly-based with world-leading strengths in business; law; health sciences; mathematics; computer science; engineering; social sciences; and the arts including journalism and music.
The University’s history dates from 1894, with the foundation of the Northampton Institute on what is now the main part of City’s campus. In 1966, City was granted University status by Royal Charter and the Lord Mayor of London became its Chancellor. In September 2016, City joined the University of London federation and HRH the Princess Royal became City’s Chancellor. Professor Sir Paul Curran has been Vice-Chancellor and President of City since 2010.
