Trauma of Diagnosis Can Affect Eye Disease Patients for Lifetime

Trauma of Diagnosis Can Affect Eye Disease Patients for Lifetime

July 26, 2022

According to recent research published in the open-access journal BMJ Open, the manner in which a patient is informed that they have a significant eye disease can affect their psychological health and capacity to manage their condition in the long run.

Over the course of several decades, a research team at Anglia Ruskin University (ARU) led by Dr. Jasleen Jolly interviewed individuals of all ages who had received an eye illness diagnosis in England and evaluated the psychological effects of the manner their diagnosis was conveyed.

All of the diseases that can cause severe vision loss, such as diabetic retinopathy, macular degeneration, Stargardt disease, and retinitis pigmentosa, have been diagnosed in the interviewees.

Four themes emerged from the interviews: the difficult diagnostic procedure, the effect of clinicians' words, the need for knowledge, and reflections on what may be changed.

Researchers discovered that patients frequently remembered the way they were informed of their illness and the manner in which the medical expert who broke the news to them conducted themselves. Their perception of themselves, their visual loss, as well as connections with others were all altered by this.

One patient described the news as "like being hit with a brick". Another said: "It was very brief, very clinical. They literally told me that I had this and in time was slowly going blind. There was no cure."

Some people felt frustrated and anxious because they had to wait weeks, months, or even years to receive a diagnosis after first becoming aware of a problem.

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 scour the internet for information, but in doing so, they came across false material and "scare stories" that made them more worried about their health.

Dr. Jolly, Associate Professor at Anglia Ruskin University's Vision and Eye Research Institute (VERI), said: "Being given a diagnosis of eye disease can be unexpected and devastating. The moment of diagnosis is emotionally charged and interactions with clinicians can have a lasting impact on how a patient comes to terms with their visual impairment. If patients don't feel they have received enough information, this can lead to them feeling lost and often searching for details from less reliable sources.”

She added: "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. Clinicians should carefully consider how they communicate a diagnosis to patients, how and when they offer information about diagnosis or prognosis, and signpost them to appropriate charities, support systems or counselling services as soon as possible. Hospitals need to put in place better support mechanisms, such as more Eye Care Liaison Officers, to provide information and support to patients, as well as more training on empathetic communication."