Shiny Happy People?

Recent advances in the treatment of blinding eye disease have been amazing – it seems that every month a new paper on gene therapy is published, offering hope to people with previously untreatable inherited retinal diseases; new electrode arrays and other developments may make retinal prostheses a realistic prospect for visual restoration in the next few years. Away from the clinic, artificial intelligence (AI) scene description on smartphones and wearable devices (e.g., the BeMyEyes app on Meta Ray-Bans) can give instant detailed descriptions of the world to people with vision impairment.

But do these sight-restoring therapies and technologies actually make people happier?

Intuitively, the answer should be a resounding “yes” – it seems obvious that seeing better should improve a person’s happiness. After all, it’s well documented that people with vision impairment have higher rates of depression and anxiety than those with better sight (1, 2). My colleagues and I recently observed that, even in people without vision impairment, mental wellbeing was still related to self-reported eyesight, with those describing their vision as “very good” having better recorded levels of wellbeing than those self-describing their vision as “good” (3).

However, if we delve into historical accounts the experience of some individuals who’ve had their sight restored tells a different story. In the 1960s, psychologist Richard Gregory performed a detailed report of “SB,” a 52-year-old man who had his sight restored after decades of blindness. After a series of fun-sounding experiments (such as taking SB to London Zoo to see if he could identify animals from a distance, a trip which ended with his subject throwing cabbages into the mouth of a hippopotamus – “his aim was good,” reports Gregory), SB became withdrawn and distressed, dying only a year after his ostensibly successful procedure. “He was not a man to talk freely, but was obviously depressed, and we felt that he had lost more than he had gained by recovery of sight… When his handicap was apparently swept away, as by a miracle, he lost his peace and his self-respect,” wrote Gregory at the time (4).

More recently, the well-known motivational speaker and former president of the San Francisco Lighthouse for the Blind, Mike May, described the difficulties he encountered when his vision was restored by limbal stem cell transplantation and keratoplasty at the age of 43. In his biography, Crashing Through: A True Story of Risk, Adventure and the Man Who Dared to See (5), May is described as someone who also struggled with the transition back to sight. Activities which had seemed remarkable to someone with severe vision impairment – traveling independently, downhill skiing – became remarkably mundane for someone who saw well.

In a case report from 2021, Dickens and colleagues describe a patient having their sight restored as experiencing a period of euphoria, followed by a period of emotional upheaval. They feel that the psychological consequences of sight restoration may be “grossly under-recognized” (6), and I tend to agree.

Of course, visual acuity will remain the most important outcome measure for most treatment trials in ophthalmology, while in other related studies, visual field, contrast sensitivity, colour vision, and reading speed might be the most appropriate endpoints. But I would argue that we can’t know anything about the global effect of any intervention unless we consider its impact on wellbeing and vision-related quality of life.

Luckily we already have rigorous instruments in place to evaluate these outcomes. The Warwick Edinburgh Mental Wellbeing Scale is a very well-established 14-item questionnaire that assesses multiple aspects of wellbeing (7). Similarly, work from Bob Massof’s group at Johns Hopkins University has led to the Activity Inventory, a way to measure the impact of vision loss on multiple aspects of daily life (8), while vision-related health utility scales like VisQoL assess the effect of vision loss on concepts like confidence, safety, and friendships (9).

When we prioritize patients’ wellbeing, it means we can then ensure that appropriate support is put into place around the time of treatment. Currently, I’m leading a study funded by Moorfields Eye Charity and the Medical Research Foundation to examine what happens to the wellbeing of young people receiving sight-restoration therapy – and, crucially, to ask them what support they feel they need around the time of treatment (10). Together with a group of clinical psychologists, our team will investigate whether positive changes in vision really do predict better wellbeing, and also how we might reduce the instances of reactive depression as detailed in the experiences of SB, Mike May, and others.

It is a key part of clinical training to think “beyond the eye” and consider the whole patient. Even though wonderful new therapies exist for some types of eye disease, it doesn’t mean that they will improve every aspect of our patients’ lives, nor that their visual benefits necessarily outweigh the psychological impact to a patient. Only once we have good studies which include a careful evaluation of wellbeing can we truly advise our patients on whether any new treatment will have a positive impact on their life. Bearing this in mind, it would be wise to heed the words of Richard Gregory recorded many years after SB’s sight restoration and ensuing death: “I don’t think those of us who tried to look after him realized what a traumatic situation it was for him, so I think to some extent we were to blame for this” (11).