Diagnostic shock remains in eye patients

Summary: The way a patient is informed that they have a particular eye disease can affect their mental health and ability to manage their condition in the long term.

source: Anglia Ruskin University

The way a patient is told they have serious eye disease can affect their mental health and ability to manage their condition in the long term, according to new research published in the journal Open Access. BMJ is open.

A research team led by Dr Jacelyn Jolly, of Anglia Ruskin University (ARU) interviewed patients across a range of ages who had been diagnosed with eye disease in England over several decades, and assessed the psychological impact of the way they were diagnosed. communication.

The people interviewed were diagnosed with a variety of conditions, including diabetic retinopathy, macular degeneration, Stargardt’s disease and retinitis pigmentosa, all of which can cause significant vision loss.

The interviews showed four themes; complex diagnostic process; influence of doctors’ words; search for information. And reflections on what could be improved.

The researchers found that patients often remember clearly the way they were told they had their condition, and the way the specialist doctor reported the news. This affected how they saw blindness and themselves, as well as how they interacted with others.

One patient described the news as “like being beaten with bricks.” Another said, “It was very brief and very clinical. They literally told me I had this, and in time I was slowly going blind. There was no cure.”

Some waited months or years for a diagnosis until they initially realized there was a problem, creating feelings of frustration and anxiety. One of the younger patients said, “You were told ‘something is wrong, you will have an appointment in 14 weeks for this test, and 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, feel anxious, and don’t sleep well. It affects relationships with other people, and it’s probably your job.”

Some patients felt the need to search the Internet to find out more, encountered misinformation and “scary stories” online and became increasingly concerned about their condition.

Some patients felt the need to search the Internet to find out more, encountered misinformation and “scary stories” online and became increasingly concerned about their condition. The image is in the public domain

Dr. Julie, Associate Professor at Anglia Ruskin University’s Vision and Eye Research Institute (VERI) said: “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 deals with visual impairment.

“If patients do not feel that they have received enough information, it can lead to them feeling lost and often looking for details from less reliable sources.

“This is one of the first studies to examine how the diagnosis communication psychologically affects the patient in the long term, and we found that the words and behavior of medical professionals influenced the patient’s ability to adapt to their condition.

Clinicians should think carefully about how to communicate the diagnosis to patients, how and when to provide information about the diagnosis or prognosis, and direct them to appropriate charities, support systems or counseling services as quickly 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 in empathic communication.”

About this psychology and research vision news

author: Jimmy Forsyth
source: Anglia Ruskin University
Contact: Jamie Forsyth – Anglia Ruskin University
picture: The image is in the public domain

original search: open access.
“It Was Like Hitting a Stone”: A Qualitative Study of the Impact of Physicians Communicating an Eye Disease Diagnosis to Patients in Primary and Secondary Care by Jasleen Jolly et al. BMJ is open


Summary

‘It Was Like Hitting a Brick’: A Qualitative Study on the Impact of Physicians Handing Over Eye Disease Diagnostics to Patients in Primary and Secondary Care

Goals

To explore patients’ experiences in obtaining an eye disease diagnosis, the psychological impact of this and how this can be improved.

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design

A qualitative exploratory study of the interview using the narrative method and inductive methods.

Adjust

This study was conducted with patients attending primary and secondary care ophthalmological appointments and optometrists in southern England.

participants

18 people diagnosed with eye disease in England.

consequences

Four axes were identified: The complex diagnostic process, the impact of doctors’ words, the search for information And the Reflections on what could be improved. The prolonged wait for a final diagnosis has been a source of frustration and anxiety for many patients. Sometimes the words and tone of specialists when presenting a diagnosis affect the patient’s view of the diagnosis and their subsequent ability to come to terms with it. Patients were in dire need of information, but many felt that they were not provided with sufficient information at the time of diagnosis and did not know whether to trust the information on the Internet. Participants felt that providing a hospital liaison and/or counseling service could mitigate the impact on patients and families.

Conclusions

Interactions with physicians can have a lasting impact on how a diagnosis is experienced and how well a patient is able to deal with visual impairment. Receiving little or no information left patients feeling lost and unsupported. This led them to search for information from less reliable sources. Physicians should consider how to communicate the diagnosis to patients, how and when to provide information about diagnosis and prognosis, and, where possible, direct patients to additional support systems and counseling services as soon as possible.

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