The trauma of diagnosis remains in patients with eye diseases

Summary: How a patient is informed that they have a specific eye disease can impact their psychological health and their ability to manage their condition over the long term.

Source: Anglia Ruskin University

How a patient is told they have a serious eye disease can impact their psychological health and ability to cope with their condition long-term, according to new research published in the open-access journal BMJ open.

A research team led by Dr Jasleen Jolly, from Anglia Ruskin University (ARU) interviewed patients of all ages who had been diagnosed with eye disease in England over several decades, and assessed the psychological impact how their diagnosis was communicated.

The respondents had been diagnosed with a variety of conditions, including diabetic retinopathy, macular degeneration, Stargardt’s disease and retinitis pigmentosa, all of which can lead to significant vision loss.

The interviews showed four themes; the complicated process of being diagnosed; the impact of clinicians’ words; searching for information; and thoughts on what could be improved.

Researchers found that patients often vividly remembered how they were told they were sick and how the healthcare professional announced the news. It impacted how they viewed their vision loss and themselves, as well as how they interacted with others.

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

Some had waited months or years to be diagnosed after becoming aware of a problem, creating feelings of frustration and anxiety. A younger patient said: ‘You are told ‘something is wrong, you are going to have an appointment in 14 weeks to do this test, you have to wait five or six months for the results.

“Five or six months is a long time when you wake up every day worried and not sleeping well. And it affects relationships with others, potentially your job.

Some patients have felt the need to scour the internet for more, coming across misinformation and “scary stories” online and increasing their anxiety about their condition.

This shows a pair of glasses
Some patients have felt the need to scour the internet for more, coming across misinformation and “scary stories” online and increasing their anxiety about their condition. Image is in public domain

Dr Jolly, Associate Professor at the Vision and Eye Research Institute (VERI) at Anglia Ruskin University, said: “Being diagnosed with 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 accepts their visual impairment.

“If patients feel like they haven’t received enough information, it can lead them to feel lost and often seek information from less reliable sources.

“This is one of the first studies to examine the psychological impact of communicating a diagnosis on a long-term patient, and we found that the words and behavior of healthcare professionals affect the ability of a patient to accept his condition.

“Clinicians should carefully consider how they communicate a diagnosis to patients, how and when they offer diagnostic or prognostic information, and refer them as soon as possible to charities, support systems or counseling services. appropriate.

“Hospitals need to put in place better support mechanisms, such as more eye care liaisons to provide information and support to patients, as well as more training in empathic communication. »

About this psychology and vision research news

Author: Jamie Forsyth
Source: Anglia Ruskin University
Contact: Jamie Forsyth – Anglia Ruskin University
Image: Image is in public domain

Original research: Free access.
“‘It was like being hit with a brick’: a qualitative study of the effect of clinician delivery of an eye disease diagnosis for primary and secondary care patients” by Jasleen Jolly et al. BMJ open


Summary

“It was like being hit with a brick”: a qualitative study of the effect of clinicians issuing an eye disease diagnosis for primary and secondary care patients

Goals

Explore the experiences of patients diagnosed with eye disease, the psychological impact of this and how this could be improved.

See also

It shows a stressed person

Design

A qualitative exploratory interview study using a narrative approach and inductive methods.

Setting

This study was conducted among patients who attended primary and secondary care eye appointments and opticians located in the south of England.

Speakers

18 people diagnosed with eye disease in England.

Results

Four themes have been identified: the convoluted process of diagnosis, the impact of clinicians’ words, the search for information and thoughts on what could be improved. The prolonged wait for a definitive diagnosis has been a source of frustration and anxiety for many patients. The words and tone of professionals when delivering a diagnosis have sometimes affected the patient’s view of their diagnosis and their subsequent ability to accept it. Patients were desperate for information, but many felt they had not received enough information at the time of diagnosis and were unsure whether to trust information found online. Participants felt that providing a hospital liaison and/or counseling service could lessen the impact on patients and families.

conclusion

Interactions with clinicians can have a lasting impact on how a diagnosis is experienced and on a patient’s ability to accept their visual impairment. Receiving little or no information, patients felt lost and unsupported. This caused them to seek information from less reliable sources. Clinicians should consider how they communicate a diagnosis to patients, how and when they offer diagnostic and prognostic information, and, if possible, refer patients to additional support systems and counseling services as soon as possible. possible.

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