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How to set up a stroke register

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VOL: 96, ISSUE: 40, PAGE NO: 40

Pauline Brunyee, RMN, SRN, is project coordinator, Leeds Stroke Database, Leeds Teaching Hospitals NHS Trust

Dr John Bamford is a consultant neurologist at St James' University Hospital, LeedsDr Graham Wardman, public health consultant, Leeds Health AuthorityDr Jon Fear, public health consultant, Leeds Health Authority

A cerebrovascular accident, more commonly referred to as a stroke, has been described as a 'catastrophe' for patients and their families (Tyrrell,1998). It is the most significant cause of disability in the UK adult population and accounts for 5.8% of the NHS and social services budget (Bosanquet and Franks, 1998).

A cerebrovascular accident, more commonly referred to as a stroke, has been described as a 'catastrophe' for patients and their families (Tyrrell,1998). It is the most significant cause of disability in the UK adult population and accounts for 5.8% of the NHS and social services budget (Bosanquet and Franks, 1998).

Organised services are vital to reduce the burden of stroke, and stroke registers are recognised as an invaluable tool in planning and monitoring the performance of stroke services (Warlow et al, 1996).

The importance of these registers is highlighted in the new National Clinical Guidelines for Stroke. These guidelines state: A register is necessary because routine hospital statistics do not accurately count stroke patients' (Royal College of Physicians, 2000).

In 1994, Leeds was in the early stages of developing its stroke services and did not have a stroke unit in either of its two acute trusts. Creating a stroke register was seen as an ideal opportunity to initiate an efficient service. Initially the register, known as the Leeds Stroke Database, was funded by a Northern and Yorkshire Region research grant, but for the past four years it has been funded by the Leeds Health Authority and now is a routine service.

Creating the database
Health care professionals with an interest in stroke, from both primary and secondary care, set up a steering group. It set its goals for the first two years using a project-management approach.

Data sources
The steering group compiled a list of possible sources of data (see box). As it was always intended that the database should become a routine part of practice, a reliable system that used multiple sources of information was needed. This would enable diagnosis to be confirmed without requiring a detailed (and time-consuming) review of every set of case notes.

Data collection
A registration protocol determined which patients were eligible to be on the register. The final criteria stated that the patient had to be:

- Over 16;

- Admitted with an acute stroke (either new or recurrent), or a subarachnoid haemorrhage;

- [QQ]Resident in the Leeds Health Authority area.

Initially, only data from hospital inpatients was collected. To collect this information, meetings were held between ward nursing staff and the stroke register team and a system implemented whereby nursing staff would complete forms detailing all new stroke admissions. The system was piloted on one hospital site before being extended to the other four acute hospitals in the district.

However, simply collecting data on the number of patients is not enough: it is the degree of disability suffered by patients that really matters. The team decided to collect this information six months after patients had had their stroke, as most significant recovery is complete by this time (Wade, 1992). A postal version of the Barthel Index (Mahoney, 1965), which measures daily living activities, was chosen to measure outcomes, with some additional questions.

Distributing the questionnaire to outpatients listed on the consultants' database was done as a prepilot study. A pilot study of the postal administration system was then carried out.

To collect the follow-up data, the stroke team developed a programme to identify relevant patients on the database, with an up-to-date list printed every two weeks. Reminders were sent out to non-responders

The patient's role
Patients have a right to know to what use information about them is being put, and a right to refuse registration on the database. A patient information sheet allows patients the opportunity to 'opt-out' of the register if they so wish.

How to ensure everyone knows what is being done
An effective publicity strategy was necessary to determine who was to be informed, what they needed to be told and how this should be done.

Methods of publicity used were:

- Personal letters to consultants and GPs;

- Local newsletters;

- A newsletter about the work of the database team;

- Drop-in workshops to introduce the database to ward staff;

- Ward visits and meetings with ward staff.

Registration and the Data Protection Act
The stroke database is registered under the Data Protection Act. Quality control programmes, outlined in the act, were introduced and remain in place.

Maintaining interest in the register Regular visits to the wards help to create and preserve an interest in the register, along with new opportunities to present information from and about the database.

There is also an educational programme for health care staff, details of which can be found on our website at:

The benefits of setting up the stroke register are becoming very obvious. The data obtained has led to a coordinated stroke service (acute and rehabilitation) being introduced in one half of the city, which is now being replicated in the other half. We have been able to provide data to support nine research studies and numerous audit projects on stroke. The information on the stroke risk register is in constant use to assist in stroke service planning, and to facilitate new research into stroke.

- Ward staff/doctors;

- Hospital information systems (discharge data sets);

- Mortality lists/death certificates;

- District nurses;

- Practice nurses/managers;

- GPs;

- Korner statistics;

- A&E records;

- Ward admission registers;

- Discharge letters;

- CT scan results;

- Physiotherapy records.

Ebrahim, S., Harwood, R. (1999)Stroke: Epidemiology, Evidence and Clinical Practice. Corby: Oxford University Press.[QQ]

Rudd, A. et al (eds) (1999)Health Outcome Indicators Report: Stroke. Report of a Working Group to the Department of Health. Oxford: National Centre for Health Outcomes Development.

Sudlow, C.L.M., Warlow, C.P. (1996)Comparing stroke incidence worldwide: what makes studies comparable. Stroke; 27: 3,550-558.

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