Stroke is the fourth leading cause of death in the UK and single largest cause of complex disability in adults, with annual costs projected to rise to £75bn within 20 years. Despite more people surviving stroke than ever before (1.2 million survivors in UK), comparatively little is known about the merits of various care pathway options after patients return home. Stakeholders have repeatedly called for better quality data to inform decision making, particularly around the medium and long-term outcomes of stroke.
At the centre of this project is the South London Stroke Register, a population-based stroke register recruiting all stroke patients living within the northern part of Southwark and Lambeth. This register has been running continually since 1995 and currently includes almost 8000 stroke patients, most of whom have been followed up for many years. Analysis of South London Stroke Register (SLSR) data up to 15 years post-stroke showed that around one third of survivors experience functional disability, reduced social participation and depression/anxiety.
The Stroke Programme is structured around three work packages:
- Engagement with stroke survivors and their families, health professionals, policy makers and commissioners of health services. Our long-running Stroke Research Patient and Family Group will continue as part of this work package and be complemented by wider stakeholder groups and policy labs.
- Investigate the impact of stroke on survivors in the 2020s through a continuation of the SLSR in a modified and updated form, incorporating the new WHO ICD-11 definition of stroke and several new outcome variables to better reflect the long-term impact of stroke.
- Develop patient portals and investigate how they can improve the care of stroke survivors and their decision making/outcomes.
These work packages are interlinked, to ensure that we are analysing data in the most useful way, that patient portals are usable by stroke survivors who may have complex disabilities and that outputs are relevant to all stakeholders and have the greatest chance of translating into improved health care and policy.
Within our group there is close collaboration with the Oxford Vascular Study (OxVasc), the Sentinel Stroke National Audit Programme (SSNAP), the Stroke in Sierra Leone (SISLE) research group and NIHR ARC South London.