The trauma of the diagnosis remains with patients with eye disease

Summary: The way in which a patient is told that they have a specific eye disease can affect their psychological health and how they cope with their condition in the long term.

A source: England Ruskin University

Telling a patient that they have a serious eye condition can affect their psychological health and their ability to cope with their condition in the long term, according to new research published in the journal Open Access. BMJ Open.

A research team led by Dr Jaslin Jolley of Anglican Ruskin University (ARU) spent several decades interviewing patients of all ages who had been diagnosed with eye disease in England and interviewed them about the psychological impact of their diagnosis. reported.

Interviewees were diagnosed with various conditions that can cause significant vision loss, including diabetic retinopathy, macular degeneration, Stargardt disease, and retinitis pigmentosa.

The interviews revealed four themes; complex process of diagnosis; impact of clinicians’ words; information search; and thinking about what could be improved.

The researchers found that patients remember better how they were told about their condition and the attitude of the healthcare professional who delivered the message. It affected their vision and how they saw themselves, as well as how they interacted with other people.

One patient described the news as a “winter shock”. Another said: “It was very short, very clinical. They told me that I had it and was slowly going blind over time. There was no cure.”

Some have waited months or years for a diagnosis, creating a sense of anxiety and worry. One young patient was told: “There’s something wrong with you, you have an appointment at 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 to wake up every day, worry and not sleep well. It affects the way you interact with other people and maybe even your job.”

Some patients have encountered misinformation and “horror stories” on the Internet, increasing their anxiety about their condition and feeling the need to troll the Internet to learn more.

Some patients have encountered misinformation and “horror stories” on the Internet, increasing their anxiety about their condition and feeling the need to troll the Internet to learn more. Image is in the public domain

Dr Jolly, Associate Professor at the Vision and Eye Research Institute (VERI) at Ruskin University, England, said: “Diagnosing an eye disease can be unexpected and devastating. The moment of diagnosis can be emotional, and interactions with clinicians have a lasting impact on how a patient comes to terms with vision loss.

“If patients feel they are not getting 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 how communication of a diagnosis affects the patient psychologically in the long term, and we found that the words and behavior of health professionals affected the patient’s ability to cope.

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

“Hospitals need to develop better support mechanisms, such as eye care liaison officers, to provide information and support to patients, as well as more training in empathic communication.”

This is about psychology and vision research news

Author: Jamie Forsyth
A source: England Ruskin University
The connection: Jamie Forsyth – Ruskin University England
Photo: Image is in the public domain

Original research: Open access.
“‘It was like being hit with a brick’: A qualitative study of the effectiveness of clinicians’ communication of eye disease diagnoses for primary and secondary care patients” Jaslyn Jolly et al. BMJ Open


Abstract

“It was like being hit with a brick”: A qualitative study of the effectiveness of clinicians’ delivery of eye disease diagnoses for primary and secondary care patients.

goals

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

See also

This shows the bnst neurons

design

Exploratory qualitative interviewing using narrative and inductive methods.

installation

This study was conducted in primary and secondary care and with patients attending ophthalmic appointments at opticians in the south of England.

participants

In England, 18 people got eye disease.

Results

Four themes were identified: the complex process of diagnosis, the influence of clinicians’ words, information seeking the and Thinking about things that can be improved. The long wait for a definitive diagnosis was a source of frustration and anxiety for many patients. When making a diagnosis, the words and voices of the professionals sometimes influence the patient’s perception of the diagnosis and later ability to come to terms with it. Patients were hungry for information, but many of them felt that they were not provided with enough information at the time of diagnosis and did not know that they could not trust information found on the Internet. Participants felt that a hospital liaison service and/or consultation would reduce the impact on patients and families.

Conclusions

Interactions with doctors can have a lasting impact on how the diagnosis is made and how the patient copes with vision loss. Receiving little or no information left patients feeling lost and unsupported. This led them to seek information from less reliable sources. Clinicians should consider how they communicate the diagnosis to patients, how and when to offer information about diagnosis and prognosis, and refer patients to additional support systems and counseling services as early as possible.

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