Trauma of diagnosis stays with eye disease patients

A research team interviewed patients across a range of ages who had been diagnosed with eye disease in England over the course of several decades, and assessed the psychological impact of the way their diagnosis was communicated. Study is published in BMJ Journal.

Interviewees had been diagnosed with a variety of conditions, including diabetic retinopathy, macular degeneration, Stargardt disease and retinitis pigmentosa, all of which can cause significant vision loss.

The interviews showed four themes; the convoluted process of being diagnosed; the impact of clinicians' words; the search for information; and reflections on what could be improved.

Researchers found that patients often vividly remembered the way they were told they had their condition and the manner of the medical professional that delivered the news. This impacted on how they saw their vision loss and themselves, as well as their interactions with other people.

Some had waited months or years for diagnosis from initially being aware of a problem, creating a sense of frustration and anxiety. One younger patient said: "You're told 'something is wrong, you're going to have an appointment in 14 weeks to have this test done, you need to wait five or six months for the results.' Five or six months is a long time when you're waking up every day, worried, and you're not sleeping well. And it's affecting relationships with other people, potentially your job."

Some patients felt the need to trawl the internet to find out more, coming across misinformation and "scare stories" online and increasing their anxiety about their condition.

This is one of the first studies to examine how the communication of a diagnosis impacts psychologically on a patient in the long term, and we found that the words and demeanour of medical professionals affected a patient's ability to come to terms with their condition ended the researchers.

Reference: "Trauma of diagnosis stays with eye disease patients"; ANGLIA RUSKIN UNIVERSITY ,BMJ Open. DOI:10.1136/bmjopen-2021-059970.