The treatment of eye disease is on the brink of a revolution. Gene therapy is offering real hope to people with some inherited eye diseases, advances in retinal prostheses offer some vision to people after decades of blindness, and new drugs can stabilise or restore vision in people with progressive eye conditions. Even for those whose vision impairment remains untreatable, wearable AI devices can provide accurate, real time scene information in place of vision.
However, the psychological impact of sight restoration on people with severe vision impairment has not been assessed fully. What is the impact of moving from being someone with vision impairment to someone with good sight? What effect does it have on wellbeing if the improvement in vision does not live up to expectations? Crucially, how can we best support people to adapt to interacting in the world in a new, more visual way?
To answer these questions, I am leading a new study, funded by the Medical Research Foundation and Moorfields Eye Charity, called the Emotional Impact of Restoring Sight (EIRS), whose protocol was published in ISRCTN in March. Together with clinicians and scientists from a range of disciplines, including clinical psychology, neuroscience, ophthalmology and genetics, as well as people with lived experience of vision impairment, we will investigate the mental wellbeing of young people with vision impairment undergoing treatment intended to restore their vision.
Why does this need to be studied? Isn’t it obvious that improving someone’s eyesight will make their wellbeing better? The honest answer is that we’re not really sure. Our team have shown recently that wellbeing is associated with better self-reported eyesight, even for people without vision impairment (for example, those who say their vision is ‘very good’ have better wellbeing than those who say it is ‘good,’ on average). It is also very well known that people with vision impairment are more likely to have mental health conditions such as depression, anxiety and post-traumatic stress disorder, and are often not receiving treatment for their mental ill-health. This would suggest that improving sight should be associated with better mental wellbeing.
However, there are multiple case reports of adults who have had sight restoration procedures and whose wellbeing has not improved. Perhaps most famous is the description of ‘Virgil’ by the neurologist and prolific writer Oliver Sacks. In his 1993 New Yorker essay ‘Sudden Sight, After a Lifetime of Blindness,’ Sacks describes the case of a man whose sight was restored at the age of fifty, after being blind since he was three years old. Reviewing the earlier literature, Sacks describes how almost all the people described have an initial post-treatment euphoria, followed by being ‘overwhelmed by the enormous difficulties of adapting to a new sense.’
Psychologist Richard Gregory described this post-treatment difficulty in a similar case report in the 1960s. SB was a 52-year old man whose vision was restored through new surgical procedures. After performing repeated batteries of tests on SB, Gregory became aware that this ‘sort of taciturn, Midlands, English chap’ was ‘almost uniformly bored’ after his treatment and that after a year ‘[he] was obviously depressed, and we felt that he had lost more than he had gained by recovery of sight.’ SB died a year later, becoming known as ‘the man who was disappointed by what he saw’.
To determine whether these, and other, anecdotal reports truly represent the experience of people who have their sight restored, we will follow up to 36 adolescents who are receiving these treatments. We will use rigorous, validated rigorous psychological tools such as the Warwick Edinburgh Mental Wellbeing Scale to measure the trajectory of mental health and wellbeing for a year around the time of treatment. We will also use qualitative research methods to investigate the experiences of these young people and their families in more depth.
Our participants will be recruited in collaboration with leading ophthalmologists across London who are performing this type of ground-breaking treatment in children and young people in world-leading centres including Moorfields Eye Hospital and Great Ormond Street Hospital for Children.
By the end of 2027, we will have the first detailed reports of the mental wellbeing of people receiving these exciting treatments for severe eye disease, determining whether their wellbeing does benefit in tandem with their visual improvement or whether there is a tendency for young people to experience a post-treatment drop in wellbeing, as did Virgil and SB. Most importantly, we will listen to these young people and their families to determine how we can best support others receiving this treatment, avoiding a new generation of people who are ‘disappointed by what they see’.