Why is this research needed?
Imagine trying to learn to read, play sports, or sit an exam while unable to see half of what's in front of you. This is a challenge that is faced by many of the hundreds of children who have a stroke each year in the UK.
Now imagine trying to do those things without any support or adaptations, because no-one else knows about your vision problem. Maybe your stroke happened when you were too young to understand or explain that it had changed what you see. Maybe no-one ever asked you. No-one should have to deal with the consequences of stroke alone - but this is exactly what's happening to some children.
Someone who has a stroke in childhood may go months without having a vision assessment due to other aspects of their health needing to take priority or simply because there isn't a vision specialist available. Because vision problems aren't necessarily noticed by others unless they're specifically looking for them, it's all too easy for a childhood stroke survivor to miss out on much-needed vision rehabilitation or support in returning to everyday life.
The Out of Sight, Out of Mind team want to change the course of recovery from childhood stroke. They're developing a new way to screen for vision difficulties after stroke and other types of brain injury. The new screening tool is child-friendly and designed to be delivered by healthcare staff who work with children in the very early stages of recovering from stroke. It won't replace a vision specialist's assessment, but it will make it easier to spot when someone urgently needs assessment or support.
What are the aims of this research?
Out of Sight, Out of Mind lead researcher Professor Fiona Rowe and the team have previously worked with people affected by stroke to develop a vision difficulties screening tool called VISA for adults who’ve had a stroke or brain injury.
They’ve recently worked with childhood stroke survivors and their families as well as other stroke professionals to develop a version of VISA that’s designed for children.
During this project, the team will train healthcare professionals who aren't specialists in vision (such as nurses) to use the child-friendly version of VISA. They will focus on children who've had a stroke or other brain injury in the last four weeks. The earlier we know about vision difficulties after a stroke, the more effective rehabilitation and support can be.
Everyone who takes part will have two assessments: one full assessment by an orthoptist (i.e. a vision specialist) and one using the new version of the VISA by a healthcare professional who's not a vision specialist. This is so the team can check whether the new tool is accurate enough to be used by healthcare professionals who are already working with children who've had a stroke, and therefore whether it could be used to do an initial screening without a child having to leave the stroke ward. They will also explore whether the children and healthcare staff testing the tool feel that it's acceptable and useful for them.
What is the benefit of this research?
The adult version of VISA is already used widely in the NHS and around the world. The team hope that this new child-friendly version will follow a similar pattern. Once they've developed the tool, they plan to make it freely available to clinicians to make it easier to detect vision problems that children might be facing after stroke or other brain injury. In the short term, this will make it easier for childhood stroke survivors to get the rehabilitation they need - both for vision itself and in adaptations to other types of rehabilitation, such as taking vision difficulties into account when doing physiotherapy or speech and language therapy. In the longer term, it will make it easier for childhood stroke survivors to return to their daily lives.
What PSP priorities does this research link to?
From 2019 to 2021, we worked with the James Lind Alliance on the Stroke Priority Setting Partnership (PSP). During the PSP process, we collaborated with people with lived experience of stroke and stroke professionals to find out what they thought were the top priorities in stroke research. From this, we identified the top ten priorities in two areas: prevention, diagnosis and short-term care, and rehabilitation and long-term care.
Now, when researchers apply to us for funding, we require that their work addresses at least one of these priorities, or a priority from the Childhood Neurological Disabilities PSP Top 10 as it relates to childhood stroke.
Out of Sight, Out of Mind addresses the following priority from the Stroke PSP:
- Rehab and long-term care 6: Impacts of stroke on everyday life
Meet the team
Out of Sight, Out of Mind is led by Fiona Rowe, Professor of Orthoptics at the University of Liverpool. Fiona is an expert in how the eyes and brain work together to make sense of the world, and runs an annual research event for clinicians who want to better understand how stroke can affect vision.
Fiona says, "We're thrilled to be extending the work we've done with adults facing vision problems after stroke. It’s even more important to identify vision problems in children because of the significant impact to their development, education and future lives."
The other members of the team include:
- Brin Helliwell, a stroke survivor who has experienced vision difficulties and whose grandson also has vision difficulties as a result of a brain injury when he was a baby. Brin has used his lived experience as a stroke survivor and carer to support the planning of Out of Sight, Out of Mind, and will continue in this role throughout the project to support its delivery.
- Dr Lauren Hepworth, a postdoctoral research fellow at the University of Liverpool and an expert in vision after stroke. Lauren supports Fiona with project management. We have previously funded Lauren's postdoctoral fellowship on how vision difficulties can affect quality of life for stroke survivors.
- Dr Girvan Burnside, Reader in Biostatistics at the University of Liverpool. Girvan uses his expertise to guide project design and data analysis.
- Dr Gary McCullagh, consultant paediatric neurologist at Central Manchester University Hospitals, and Dr Stefan Spinty, consultant paediatric neurologist at Alder Hey Children's Hospital. Gary and Stefan both work extensively with children who've had a stroke or brain injury and support the project by identifying children and families who might like to take part in the project.
- Ms Jane Ashworth, consultant paediatric ophthalmologist at Central Manchester University Hospitals, and Mr Jose Gonzalez-Martin, consultant paediatric ophthalmologist at Alder Hey Children's Hospital. Jane and Jose are experts in vision and in how eye care works in hospital settings and help the rest of the team understand how their findings can be put to work in clinical practice.
The team also includes four staff members: Abigal Bridges, a research orthoptist working on day-to-day study management and data collection; a research statistician working on day-to-day study design and analysis; and a database developer and a database manager who together ensure that the data collected for the study is correctly stored.