People can experience a range of changes to their mood and thinking over a long time following their stroke.
Until now, research has only followed people for up to 12 months after their stroke. This means we don’t have enough information about how these problems may change beyond a year to be able to predict how they can expect to recover and respond to treatment.
Professor Nele Demeyere and her team have recently completed a Stroke Association funded study, known as Ox-Chronic, following stroke survivors for three years to find out how stroke affects mood and thinking in the long-term.
“We had 105 stroke survivors take part, who’d had a stroke at least one year ago,” says Nele. “We met each person to carry out detailed neuropsychology assessments twice, one year apart. We asked them to do clinical interviews and questionnaires so we could measure quality of life and psychological effects such as depression and fatigue.
“We also asked carers to fill out a questionnaire for us to give us a fuller picture of the long-term impacts of stroke.
“We received enormous support from stroke survivors in this research. We had stroke representatives, like Trevor (below), on our study oversight committees, who reviewed all of our materials to help us ensure they were accessible.
“They also helped us to organise an outreach event in September 2022 for our participants and the general public, providing guidance on materials and giving talks on their experiences of being part of the research.
“Our results found that most people had fewer cognitive difficulties over time. However, many still had problems, particularly with fatigue and mood, long after their stroke, which impacted their quality of life.
“This shows that there is hope for long-term life after stroke as we see that recovery can continue past the first year. But there are still people who need long-term, dedicated support.
“Psychological changes need to be monitored in the long term, and more research is needed into improving these outcomes.
“We’re now using our data to help answer questions that will enable scientists to develop treatments and coping strategies to help stroke survivors and their families plan for the future.
“Our research will also help to inform NHS and policy makers to treat stroke as an ongoing condition and help everyone to understand that the psychological aspects matter.”
“While I was in hospital after my stroke, someone from Oxford University asked if I wanted to take part in tests they were trialling to see how cognition is affected after stroke.
“I found it interesting and helpful for my recovery as the tests showed me where my limitations were and what I needed to work on. I was asked to carry on helping with the research after I left hospital and said ‘Yes’ as I thought it might help people in the future.
“Since then, I’ve volunteered in stroke research projects both as a participant and as a stroke patient representative, helping with setting up new research projects.
“For Ox-Chronic, I was a participant and also sat on the management team. Although the discussions were quite technical at times, they were very interesting. We were often asked about what we thought or felt about ideas for the project.
“I enjoyed the experience very much. Ox-Chronic shows that you do continue to improve after a stroke, but you also need support. Hopefully the government will take notice.”
Stroke News magazine
This article is featured in the winter 2023 edition of our magazine, Stroke News. Subscribe to our future editions available in print, on audio CD, or via email.