Care for stroke survivors urgently needs to focus on non-motor outcomes like fatigue, anxiety and reduced social participation to improve survivors’ quality of life and minimise care needs, according to a new study at UCLH and UCL.
The study is the first to comprehensively capture the wide-ranging impacts of non-motor outcomes – which also include depression and sleep disturbances – in a large group of patients.
Until now, research and care has focused on motor skills, such as the ability to walk and talk. The lack of focus on non-motor outcomes means many stroke survivors face prolonged challenges with little support.
The research team said greater awareness of non-motor outcomes of stroke would also reduce inequalities in care provision, and would have economic benefit: persistence of non-motor symptoms can result in lost income and increased care needs for patients.
The study is based on 3,080 patients who are part of the Stroke Investigation Group in North and Central London (SIGNAL) registry.
It was delivered by researchers from The National Hospital for Neurology and Neurosurgery (NHNN) at UCLH, and UCL Queen Square Institute of Neurology Stroke Research Centre. It was funded by the National Institute for Health and Care Research UCLH Biomedical Research Centre.
Key findings were that, six months after stroke:
- 57% of patients experienced fatigue
- 55% experienced reduced social participation
- 54% experienced sleep disturbances
- 44% experienced constipation
Risk factors for these non-motor outcomes included:
- having had intracerebral haemorrhage, a subtype of stroke which causes bleeding inside the brain
- the severity of the stroke
- having had a previous stroke
- having pre-existing cardiovascular disease
Lead author Dr Hatice Ozkan said: “Research into non-motor outcomes in stroke has been a large gap in research. And where research has been done in non-motor outcomes, the studies have been in small groups and focused on individual outcomes rather than looking at the overall picture.”
Senior author and consultant neurologist Prof David Werring said: “Despite the burden of these non-motor outcomes, there are currently no standardised care pathways to address them. Clinical care has overlooked the non-motor outcomes that dominate life after stroke. This has led to an under-estimation of the true burden faced by stroke survivors. There is an urgent gap in post-stroke care.”
The study provides the critical evidence for the urgent need to implement comprehensive approaches the address the long-term non-motor effects of stroke.
Dr Robert Simister, Stroke Service lead at UCLH, said: “The study shows that we must place more focus within care on these non-motor outcomes, with patient voices at the core of stroke service design. If we increase support through existing stroke services, we can reduce the burden on patients, minimise future hospital admissions, and improve overall quality of life for patients. And for many of these non-motor outcomes, there are good treatments available.”
The results of the study align with the NHS 5-Year Plan focus on the need for improved access to high quality care post stroke for all who need it, and with the priorities of stroke patients as identified in a recent James Lind Alliance Priority Setting Partnership paper (Stroke Rehabilitation and Long Term Care Top 10 Priorities). The findings underscore the urgent need for comprehensive care that addresses non-motor outcomes.
The paper, ‘Prevalence, predictors, and patterns of patient reported non-motor outcomes six months after stroke: a prospective cohort study’, is published in the December 2024 issue of The Lancet Regional Health – Europe.
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