People living with complex eye condition sought for University of Sheffield research
- A Sheffield research team are asking people with a little known eye condition, nystagmus, for their input into new research to help improve patient care
- The team includes a University of Sheffield student who is evaluating the effectiveness and accessibility of an information pack developed at Sheffield given to newly diagnosed patients
- The team hope to raise awareness of the condition through novel resources such as a virtual reality simulator
- Nystagmus is a complex eye condition that causes involuntary eye movements affecting about 1 in 1000 people in the UK
People with nystagmus are being invited to contribute to medical research by sharing their experiences of accessing a patient information pack, designed to support people living with the little known and complex eye condition.
A research team from the University of Sheffield’s Health Sciences School has opened a new survey for people to send in their experiences about accessing supportive information since being diagnosed. Open until 17 July 2020, the team hopes the data from the survey will help them to develop new ways to improve patient care and ensure that patients receive the right information at the right time.
Nystagmus is a condition which causes involuntary eye movements, often described as wobbling or flickering and can lead to severe visual impairment. The condition can be caused by abnormal functioning of the part of the brain, or inner ear, which regulates eye movement. Sometimes the cause of the condition may be unknown.
Working in partnership with Nystagmus Network, the team developed the Nystagmus Information Pack in 2017 to be a source of information and support to people who had been diagnosed with the condition. Developed with input from service users (patients and their families) and clinicians, it was nominated and 'highly commended' for a BMA Patient Information Award in 2018.
The team also hopes to raise awareness of the condition and has already developed a novel virtual reality simulator - free to download world-wide - so people can experience what living with aquired nystagmus is like.
The partnership has also enabled the University to install an eye movement recorder to train students studying for a BMedSci degree in Orthoptics in specialist observation of nystagmus, which will prepare them for clinical placements and assist with their research projects.
Applied Social Science student, Martha Foulds, had the opportunity to become the Research Assistant for the project. She developed the survey and is evaluating the patient information pack to determine how widely it is used and whether the information it provides is effective and accessible.
She said: “I got involved with the project because I know how important it is to have access to information and to be supported. I was diagnosed with nystagmus as a young child and before starting University, I was an advice worker specialising in visual impairment so it's of great interest to me.
“Our survey will help us to learn how best to support people living with nystagmus, so we can improve upon the patient resource pack to ensure the care pathway used by clinicians provides high-quality information, helping patients across the UK access a consistent standard of care.
“When the questionnaire closes, I will be analysing the resulting data to understand whether people are aware of the current resources and if the content is useful to them. We hope that by engaging with patients in this way we can improve patient care and access to support.”
Nystagmus can affect anyone at any point in their life and there are many possible causes. It can develop at birth or in early infancy, be acquired due to a neurological condition, through trauma to the brain or inner ear or the cause can remain unknown in some cases.
People with the condition have reduced or severely impaired vision and may also experience 'oscillopsia' alongside their nystagmus, where things appear to move when they are still.
Dr Helen Griffiths, a Senior Lecturer in Orthoptics at the University, said: “Nystagmus can be seen as a symptom for other underlying health conditions, and although there are treatments that can address underlying health problems affecting the severity of the condition, there currently isn’t a cure.
“As nystagmus one of the most common form of visual impairment in school aged children, this makes it really important that we ensure support is consistent across our healthcare services. Especially for children and their parents or guardians; as young people in particular benefit from extra care when transitioning through different stages of life, such as moving onto new levels of education and into adulthood.
“The data we collect will help us work with patients to improve care and support at the time of diagnosis, so people living with nystagmus are able to manage their condition and improve their quality of life.”
- The ‘Questionnaire to Evaluate the University of Sheffield Nystagmus Information Pack’ is accessible until (17th July 2020). For any questions please contact: Anne Bjerre, Lecturer in Orthoptics, University of Sheffield at firstname.lastname@example.org
- The ‘Nystagmus Oscillopsia Sim VR’ is a virtual reality simulator which allows the user to gain an appreciation of what it is like to experience nystagmus and oscillopsia. The app uses eye movement recordings from real patients with nystagmus and replicates the eye movements within virtual reality. It was developed by the University’s Medical Physics Department and Academic Unit of Ophthalmology and Orthoptics, and was funded by the University of Sheffield’s Institute for in silico Medicine (INSIGNEO) and Sheffield Hospitals Charitable Trust. It is free to download and already has thousands of downloads worldwide.
- The Nystagmus Network provides support, information, funds research and raises awareness of the condition.
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