Experts Develop Novel Questionnaire for Post-Brain Injury Vision Impact

Vision experts from the University of Liverpool have developed a first of its kind questionnaire to assess the impact of post-brain injury visual impairment.

Funded by the Stroke Association, it gives health care professionals an effective tool to better understand this issue.

Nearly three-quarters of stroke survivors have a visual problem which can include visual field loss, eye movement defects, reduced central vision and visual perception problems. In turn these experiences can affect functional ability and quality of life, leading to or exacerbating depressive symptoms.

Dr Lauren Hepworth, Post Doctoral Orthoptic Research Fellow at the University of Liverpool’s said: “At the Institute of Population Health we’re dedicated to improving health outcomes and quality of life. This questionnaire is the first tool of its kind to target brain injury survivors and assess the impact of associated visual impairments. Sadly, visual problems can affect many everyday activities and result in loss of independence, however being able to identify the issues which specifically effect the individual allows clinicians to offer the best support to their patients. Significantly this questionnaire is open and free for use in clinical practice or research studies and we encourage health professionals to use this method in better understanding their patient’s needs.”

Genise Turnbull, a stroke survivor has worked with Dr Hepworth on the development and validation of the questionnaire, as a representative of those with lived experience of visual impairment after brain injury. Genise said: “This questionnaire is a really important tool and help patients get early and relevant help.

“After surviving a stroke in 1999 I developed nystagmus and terrible double vision. I had feelings of nausea and vertigo and the only way to alleviate this was to keep my eyes closed. This had such a huge impact on my life – I couldn’t drive, read, or watch TV. What was most upsetting was being unable to see my daughter’s face clearly and feed her. I also had a fear of falling which made me feel incredibly vulnerable. With the help of prisms in my lenses I have gotten used to the condition and have accepted its limitations on me.”

“I was pleased to be able to work with Lauren and offer my experience to help develop the questions and, importantly make them appropriate for people who have difficulty with their language or speech.”

A paper published in Quality of Life Research validates the Brain Injury associated Visual Impairment – Impact Questionnaire (BIVI-IQ) which establishes what difficulties people may be facing in their day to day lives. This can include using technology and socialising as well as understanding their emotional wellbeing and confidence in carrying our tasks.

Dr Clare Jonas, Research Communications and Engagement Lead at the Stroke Association said: ”This research addresses a big area of unmet need and will help more people to rebuild their lives after stroke. Vision problems affect many stroke survivors and can make it harder to do everyday things, like reading, shopping, driving, and working. This can be difficult both practically and emotionally. We’re really pleased to have funded Dr Hepworth’s work in this area, as understanding the effects of stroke on everyday life is a top research priority.

“It’s great to hear that the BIVI-IQ assessment tool has shown to be practical for clinical measurement of vision-related quality of life. Now that it’s freely available for use, we hope that clinicians and researchers alike will use it to inform the assessment, treatment and support offered to stroke survivors with vision problems.”

The paper, ‘Validation of the brain injury associated visual impairment ‑ impact questionnaire (BIVI‑IQ)’ was published in Quality of Life Research (DOI:0.1007/s11136-023-03565-0).

• Stroke strikes every five minutes in the UK and it changes lives in an instant.
• The Stroke Association is a charity working across the UK to support people to rebuild their lives after stroke. We believe that everyone deserves to live the best life they can after stroke. From local support services and groups, to online information and support, anyone affected by stroke can visit stroke.org.uk or call our dedicated Stroke Helpline on 0303 3033 100 to find out about support available locally.
• Our specialist support, research and campaigning are only possible with the courage and determination of the stroke community and the generosity of our supporters. With more donations and support, we can help rebuild even more lives.