Journal of Public Health Medicine
166–171
The prevalence of stroke and
associated disability
Paul G. O’Mahony, Richard G. Thomson, Ruth Dobson, Helen Rodgers and
Oliver F. W. James
Abstract
Background There are limited data available on the pre-
valence of stroke in the United Kingdom. Such data are
important for the assessment of the health needs of the
population. This study aimed to determine the prevalence of
stroke and the prevalence of associated dependence in a
district of northern England.
Methods This was a two-stage point prevalence study. A
valid screening questionnaire was used to identify stroke
survivors from an age- and sex-stratified sample of the
population aged 45 years and over in a family health services
authority district. This was followed by assessment of stroke
patients with scales of disability and handicap.
Results The overall prevalence of stroke was found to be
17.5/1000 (95 per cent confidence interval (CI) 17.0, 18.0). The
prevalence of stroke-associated dependence was 11.7/1000
(95 per cent CI 11.3, 12.1). Self-reported comorbidity was
most commonly due to circulatory and musculoskeletal
disorders.
Conclusions The prevalence of stroke in this district is
considerably higher than current guidelines and previous
results suggest. Nevertheless, the result from this study
combined with that from a previous study in another district
in the United Kingdom should allow those interested in
epidemiologically based health needs assessment to make
reasonable estimates of the burden of stroke in their area.
Keywords: stroke, prevalence, disability, health needs
assessment
Introduction
Although mortality rates from cerebrovascular disease appear to
be declining in most industrialized nations (by up to 5 per cent
per year), stroke remains the third most common cause of death
in the United Kingdom (UK).1 Moreover, stroke disease is a
major cause of morbidity and long-term disability and handi-
cap.2 The Oxfordshire Community Stroke Project provided
valuable data on stroke incidence and outcome.3 However, such
data are insufficient for describing the true impact of stroke and
identifying the continuing health and social needs of these
patients. Of more relevance to the care of long-term stroke
survivors is the prevalence of the condition and the prevalence
of associated disability and handicap.
Vol. 21, No. 2, pp.
Printed in Great Britain
Until recently, there have been limited data available on
stroke prevalence in the UK. Many previous prevalence
estimates have been calculated either from incidence and
survival data, or from disability surveys.4–6 An epidemio-
logically based health needs assessment advised the use of an
average figure of 600 per 100 000 for stroke prevalence, basing
this on studies from the United States, Scandinavia and
elsewhere.7 However, it is difficult to confidently extrapolate
results from other countries to a British population, given the
fact that incidence rates and mortality vary considerably
between countries.8 Furthermore, the wide geographical
variations in mortality in the UK may be reflected in similar
variations in prevalence.9
Although a 1971 survey by Harris suggested that stroke
accounts for 24 per cent of severe disability in the community,
the true level of disability associated with stroke in our
population is unclear.10 Knowledge of the prevalence of
disability and handicap associated with stroke is essential for
determining the impact of stroke on health and social service
providers and for planning for adequate service provision.
The first definitive study of stroke prevalence in this country
has recently been published, reporting a lifetime prevalence of
1470 per 100 000 for stroke in a district in Yorkshire,11 a result
which is clearly greater than has been suggested previously.7
The same study found a point prevalence of stroke-associated
disability of 620 per 100 000, also higher than the figure
suggested as a guidance for health care purchasers.
For accurate health and social service planning, we cannot
necessarily apply the Yorkshire results to any other districts or
regions without good evidence of similar stroke epidemiology.
The former Northern Region had the highest standardized
mortality ratio from stroke of any English health region.9 We
Departments of Medicine (Geriatrics)1 and Epidemiology and Public Health2,
University of Newcastle, Newcastle upon Tyne NE2 4HH.
Paul G. O’Mahony, Research Registrar1,2
Richard G. Thomson, Senior Lecturer in Public Health Medicine2
Ruth Dobson, Research Associate1,2
Helen Rodgers, Senior Lecturer in Stroke Medicine and Services1,2
Oliver F. W. James, Professor of Medicine (Geriatrics)1
Address correspondence to Richard Thomson.
䉷 Faculty of Public Health Medicine 1999
 PR EVAL ENCE OF STROKE
determined the prevalence of stroke and associated disability in
a district of this region.
Methods
A random age- and sex-stratified sample of 2000 persons aged
45 years or over was selected from the former Newcastle
Family Health Services Authority (FHSA) register. Two
hundred persons were chosen in each ten year age–sex group
(45–54, 55–64, 65–74, 75–84, and 85+ years). At the time of
the study, the district was estimated to have a total population of
285 310, of whom 100 954 were aged 45 years or over.12
Methods have been described in detail elsewhere.13 A brief
screening questionnaire was posted to all subjects with a letter
co-signed by general practitioners (GPs) and a freepost
envelope for its return. The questionnaire included the question
‘Have you ever had a stroke?’ and two questions aimed at
determining dependence status.14 The prevalence date was
taken as the date of posting. The Newcastle Joint Ethical
Committee approved the study.
Validation of the screening question involved a standardized
home assessment visit for those reporting a history of stroke,
and accessing multiple sources of case ascertainment for all
2000 subjects. Letters requesting the home visit were followed
by two reminders where necessary. In cases where the most
recent stroke was less than six months previously, the visit was
planned for a minimum of six months after the patient’s (most
recent) stroke at a time when near maximum recovery would
have been expected. General practice records, hospital case
notes, a local stroke register and the Regional Informations
Systems database were accessed as sources of case ascertain-
ment. This validation process for the screening questionnaire,
therefore, allowed identification of definite cases of stroke
among negative and non-responders.13 All such patients were
also offered the home assessment interview after approval had
been sought from their GP.
The home visit incorporated a detailed history and
examination to allow the examiner (P.O’M.) to confirm or
refute the diagnosis of stroke. Stroke was defined according to
World Health Organization criteria, i.e. ‘Rapidly developing
clinical signs of focal or global disturbance of cerebral function
with symptoms lasting 24 hours or longer . . . with no apparent
cause other than of vascular origin’.15 The interview inquired
about basic demographic data, about the patient’s stroke(s), and
self-reported comorbidity. The comprehensive structured inter-
view also included scales of disability (Barthel Activities of
Daily Living (ADL) Index16) and handicap (Oxford Handicap
Scale17). Assessments of mental function and communication
skills were incorporated to determine suitability for interview.
If the patient scored less than 7/10 on the Abbreviated Mental
Test Score (AMTS),18 or had evidence of severe communi-
cation difficulty, information was collected by proxy from the
patient’s primary carer. The home visit assessment was
167
pretested with stroke patients living in an area outside the
study district.
The prevalence of stroke was calculated for the population
sample chosen, and corrected to the total district population. To
obtain a more precise estimate of stroke prevalence in the
district, the cases of stroke resident in long-term National
Health Service (NHS) nursing care units were also ascertained.
Cases were identified by asking the physician and/or senior
nurse in charge of the wards of such units to indicate which of
their patients had a history of stroke. At the time of the study,
there were an additional 53 cases of stroke in such care. Such
patients are not registered with GPs and, therefore, are not
included on the FHSA register.
Data were entered onto a specifically designed relational
database, and statistical analysis was performed using t-tests
for comparison of means and x2 tests for comparison of
proportions.
Results
The screening questionnaire had a response rate of 88 per cent
(1663/1880) when corrected for those who had died, were not at
their registered address or had been excluded.13 There were 173
respondents who answered positively to a history of stroke. Of
these, 104 were subsequently determined to have definitely had
a stroke by the validation procedure and 71 (68 per cent) of
them agreed to a home assessment visit. Six cases of stroke
were identified among negative responders (n ¼ 1490) to the
screening question, of whom two agreed to be visited. A further
six cases were ascertained from non-responders (n ¼ 217),
three of whom were visited. The proportion of stroke patients
identified among responders (110/1663) was significantly
greater than the proportion among non-responders (6/217),
(P < 0:005).
For the 110 confirmed cases of stroke who responded to the
screening questionnaire, 62 (56 per cent) reported requiring
help from another person to perform everyday activities, and
64/98 (65 per cent) felt they had not made a complete recovery
from their stroke. There were no significant differences in the
responses to these two questions on the screening questionnaire
between those who had a home assessment visit and those who
did not (P > 0:05 for both questions).
Prevalence of stroke
The age- and sex-specific and age- and sex-adjusted prevalence
rates for stroke are shown in Table 1, with comparative rates
from the Yorkshire study.11 A similar trend across age groups is
seen between the two British studies, with the prevalence being
higher among males than among females for all age groups
except for those aged 85 years and over. For age groups above
65 years, the results from the two studies are similar, with
closely overlapping confidence intervals. For the younger age
groups, there is less close agreement because our study had
168 JOURNAL OF PUBL IC HEALTH MEDIC I NE

Table 1 Age- and sex-specific and age- and sex-adjusted lifetime prevalence rates for stroke and for stroke-associated
dependence in Newcastle upon Tyne, with comparative figures for stroke prevalence for North Yorkshire11

No. of
dependent
stroke
Number No. of stroke survivors/
Effective of Comparative survivors no. of stroke Prevalence rate
Age or population stroke Prevalence rate prevalence rates assessed for survivors of dependent
sex group sample cases /1000 (95% CI) from Yorkshire11 dependence assessed stroke survivors*

Females
45–54 198 1 5.1 (0.0, 14.9) n.a. 1 0/1 0.0 (0.0, 0.0)
55–64 195 6 30.8 (6.5, 55.0) 11.4 (6.9, 17.8) 5 3/5 18.5 (0.0, 37.4)
65–74 195 10 51.3 (20.3, 82.2) 33.9 (25.6, 44.0) 7 6/7 44.0 (15.2, 72.7)
75–84 194 15 77.3 (39.7, 114.9) 79.7 (64.8, 97.3) 13 10/13 59.5 (26.2, 92.8)
85þ 187 21 112.3 (67.0, 157.6) 104.4 (77.0, 137.3) 11 10/11 102.1 (58.7, 145.5)
Males
45–54 182 2 11.0 (0.0, 26.1) n.a. 1 1/1 11.0 (0.0, 26.1)
55–64 189 9 47.6 (17.3, 78.0) 21.6 (15.0, 31.2) 6 3/6 23.8 (2.1, 45.5)
65–74 186 13 69.9 (33.3, 106.5) 46.8 (36.0, 59.7) 11 5/11 31.8 (6.6, 57.0)
75–84 188 27 143.6 (93.5, 193.7) 110.1 (87.5, 136.5) 14 11/14 112.8 (67.6, 158.1)
85þ 168 12 71.4 (32.5, 110.4) 82.2 (43.7, 146.5) 7 6/7 61.2 (25.0, 97.5)
Females and males
45–54 380 3 7.9 (0.0, 16.8) n.a. 2 1/2 3.9 (0.0, 10.3)
55–64 384 15 39.1 (19.7, 58.4) 16.4 (12.3, 21.5) 11 6/11 21.3 (6.9, 35.8)
65–74 381 23 60.4 (36.5, 84.3) 39.8 (33.3, 47.7) 18 11/18 36.9 (18.0, 55.8)
75–84 382 42 109.9 (78.6, 141.3) 91.1 (78.5, 105.7) 27 21/27 85.5 (57.4, 113.5)
85þ 355 33 93.0 (62.8, 123.2) 98.4 (75.5, 126.0) 18 16/18 82.7 (54.0, 111.3)
All 45þ (age- and sex-adjusted) 47.4 (46.1, 48.7) 32.9 (31.8, 34.0)
All ages (age- and sex-adjusted) 17.5 (17.0, 18.0) 14.7 11.8 (11.4, 12.2)

n.a., not available.

* Dependence determined by a score of < 20 on the Barthel ADL Index or 3–5 on the Oxford Handicap Scale.

proportionately less younger subjects with stroke, and the broad
confidence intervals reflect this.
Demography
The mean age of the 76 stroke patients assessed at the home
visit (77.3 (SD 10.1) years) was not significantly different from
that of the 40 subjects not visited (80.5 (SD 10.1) years),
P > 0:1. The age range of patients visited was 52–96 years;
there were 39 (51 per cent) males and 37 (49 per cent)
females. Thirty-four (45 per cent) were married, 33 (43 per
cent) widowed, 6 (8 per cent) single or never married and 3 (4
per cent) separated or divorced.
Disability and handicap
Using the Oxford Handicap Scale, 23 (30 per cent) scored 0–2,
indicating independence, whereas 53 (70 per cent) scored 3–5,
suggesting dependence. Using the Barthel ADL Index, a very
similar proportion (29 per cent) were fully independent,
attaining the maximum score of 20 on the scale. For
determining the prevalence of dependent stroke survivors
Table 2 Prevalence of self-reported (or proxy-reported)
comorbidity among the 76 stroke patients who received a
home assessment visit (numbers, with percentages given in
parentheses)
Comorbid condition Patients

High blood pressure 33 (43)

Comorbidity Arthritis or rheumatism 32 (42)
Circulation trouble 28 (37)
Of the 76, 46 (61 per cent) had suffered one stroke only, 25 (33 Heart trouble 27 (36)
per cent) more than one, and reliable information was not Diabetes 10 (13)
available for the remaining five (6 per cent). The frequency of Others* 47 (62)
self-reported (or proxy-reported) comorbidity is shown in Table
*Other health problems reported included epilepsy, emphysema and
2. A total of 14 (18 per cent) subjects obtained a score of less chronic bronchitis, asthma, Parkinson’s disease, thyroid disorders and
than 7/10 on the Hodkinson AMTS. skin disorders.
 PR EVAL ENCE OF STROKE
among subjects aged 45 years and over, the worst result of the
two scales was chosen for each individual stroke patient (Table
1). To allow calculation of the all-ages prevalence in the
population, it was assumed that the maximum proportion of
stroke subjects aged less than 45 years who are disabled is 25
per cent.19
Discussion
Knowledge of the true prevalence of stroke both locally and
nationally is necessary for determining the impact on patients
and carers, social services and health care providers and
purchasers. Of greater importance for such groups are reliable
data on the prevalence of stroke-associated disability and
handicap to allow assessment of the consequent health needs.
Our study provides valuable results for these variables.
Bias of population sample
Our sampling method had proportionately greater numbers of
older subjects. This was to ensure accurate determination of
both the validity of our screening questionnaire and stroke
prevalence among the age groups in which it is most common.
The reporting of our demographic data, therefore, is biased
towards older stroke survivors and does not reflect the actual
population structure. Nevertheless, we present age- and sex-
specific prevalence rates for stroke and for associated
dependence, and age- and sex-adjusted rates.
We have reported levels of disability and handicap of stroke
survivors. Not all the disability and handicap in such subjects
will specifically be due to the stroke. In fact, with increasing
age, pre-stroke disability and handicap becomes more prevalent
so that post-stroke dependence will inevitably have more
causes. However, the data we present are of value, as
purchasers of health care are interested in planning for services
specifically for stroke patients, and the new White Paper on the
future of the NHS strongly promotes programme-based
commissioning centred around diseases.20
Some bias may have resulted from the collection of data by
proxy. The data collected on demographic details are likely to
be as accurate when collected from a proxy. It could be argued
that the data concerned with impairment, disability and
handicap may not be accurate if collected by proxy but there
was no other feasible way of collecting the information from
the most severely disabled subjects. In fact, carer assessment by
Barthel ADL Index has been recommended for patients with
cognitive deficits.21
Validity of diagnosis of stroke
Although there may be a number of potential biases in our
study, the screening questionnaire we developed for identifying
stroke survivors produced a very high response rate, and has
been validated.13 Other studies have not published such detail
on the validity of their screening methods. The Danish and
169
Finnish prevalence studies failed to follow up false negatives to
their screening process and must therefore have underestimated
the true prevalence of stroke.22,23 In the Yorkshire study, there
is no mention of the specificity of the screening method used.11
Furthermore, the absence of any false negatives was stated after
assessing the screening question on a relatively small number
(n ¼ 150) of subjects of different (albeit overlapping) age range
to the final study population. Although validated against a
diagnostic index, only a small number of elderly subjects could
have been included. As the older age groups are more likely to
have cognitive problems and hence poorer memory of possible
strokes, it is important to ensure adequate testing of validity in
this group.
Prevalence of stroke
Until recently we had very limited data on the prevalence of
stroke in the UK. Our study now means there are two reports
with definitive results of the prevalence of stroke and associated
dependence. Our study aimed to determine the prevalence of
stroke in the population aged 45 years or over. The Oxfordshire
Community Stroke Project found that an additional 4 per cent
of strokes occurred in the under 45 years age group.3 The
prevalence for the total population in our study area could
therefore be estimated as 1750/100 000 (95 per cent confidence
intervals (CI) 1700, 1800). The additional 53 cases of stroke in
long-term NHS nursing care can be added to the expected
number of cases of stroke in the study population, giving a total
prevalence of stroke of approximately 1770/100 000 (95 per
cent CI 1720, 1820).
A comparison of this rate with that from the recent study
from Yorkshire (1470 per 100 000) confirms regional differ-
ences within the UK consistent with the known variations in
mortality experience.11 Nevertheless, it is encouraging that
both northern studies have found broadly similar results,
suggesting that the previously quoted figure of 600/100 000
would be a substantial underestimate if applied to our
population.7 It would seem likely that the Yorkshire study
may have further underestimated the prevalence of stroke as a
result of the assumption of no false negative responses in their
final study population. Nevertheless, regional differences in
incidence and survival are also likely to contribute to the
variation.9,12,24 The two studies confirm that using prevalence
rates from other countries as a basis for health needs assessment
is inadvisable.
There are an increasing number of stroke prevalence studies
from other countries. As with studies of incidence, epidemio-
logical studies of stroke prevalence are prone to specific biases.
Therefore, it may be difficult to compare stroke prevalence
rates from many of the studies available because of differences
in, among other factors, the age and sex distribution of the
population, the geographical diversity of the populations
studied and the different methods used to determine prevalence.
Although some researchers have standardized their pre-
valence results either to the population of the country being
170 JOURNAL OF PUBL IC HEALTH MEDIC I NE
studied or to a standard European, US or world population, this
is not consistent across all studies, nor is there consistency in
the standard reference population used.
Within Europe, the earliest prevalence studies were carried
out in Scandinavia.22,23 More recent studies have been carried
out in Italy,25 France26 and Norway.27 The result from the
French study is the highest reported rate in Europe (outside the
UK) and may reflect the fact that the region studied had, at
the time, the oldest population of all regions of France or
Europe. Age-specific rates were not given, thereby making a
true comparison with other studies difficult.
It is clear that there are wide international variations in
stroke prevalence, in addition to national differences. The
Norwegian study used a method which was well validated
among elderly age groups, and found a prevalence of stroke of
1670/100 000, very similar to our result.27 Mortality rates are
lower in Norway than in England and Wales, but have been
declining at a similar rate.8 When standardized to the World
Health Organization world standard population, the prevalence
rate for stroke in those aged 55 years and over in our study is
35.0/1000. This compares with similarly standardized rates for
Yorkshire, 25.8/10007 and New Zealand, 31.2/1000.28 For the
Norwegian study, it is possible to standardize for those aged 50
years and over, giving a rate of 27.6/1000.27
Disability and handicap
Using the two previously validated dependence questions, 56
per cent of our stroke patients reported requiring help from
another person to perform everyday activities (compared with
55 per cent in the Yorkshire study), and 65 per cent felt they had
not made a complete recovery from their stroke (compared with
80 per cent).11,14 The Yorkshire group calculated the pre-
valence of stroke-associated disability as 620 per 100 000 of the
population.11 We estimated this figure to be approximately
1170/100 000 (Table 1), a result greater than previous estimates
and more than twice that calculated in an earlier study.7
Including the cases of stroke in long-term NHS care (n ¼ 53)
and assuming that all of those were dependent, the prevalence
of dependent stroke survivors in the study population can be
calculated as approximately 1200/100 000. The higher result
from our study may have occurred because of a different
method of determining dependence. We used the results from
the Barthel ADL Index or Oxford Handicap Scale, whereas the
Yorkshire group used self-reported disability for a number of
everyday activities. The striking difference may also reflect the
possibility of strokes being more severe in our district than in
Yorkshire, or there may be some form of survival bias.
Alternatively, rehabilitation services may be better in Yorkshire,
leading to better outcome from stroke.
This study’s results, alongside those of the study from
Yorkshire, confirm that the age- and sex-specific prevalence of
stroke in this country is considerably greater than previous
estimates have suggested. Standardized rates, however, show
that there are similar rates in different countries. Of greater
importance, this study emphasizes that the prevalence of stroke-
associated disability is higher than realized. We feel that our
data provide a useful basis for purchasing health and social care
for stroke survivors in our district. Purchasers from other
districts interested in adequately assessing the health needs of
their population must be aware of these discrepancies, but could
use the available data to provide a reasonable estimate of the
prevalence of stroke within their area.
The projected changes in the demography of the population
make it important to assess the needs of, and plan services for,
elderly people, as the numbers of elderly people at risk of stroke
and associated dependence will continue to rise. Following the
implementation of the NHS reforms in the early 1990s,
purchasing authorities are required to set contracts for services
which are based on an assessment of population need for health
care. The latest NHS reforms stress the importance of health
needs assessment by placing the emphasis on commissioning
using disease-based programmes of care, further highlighting
the importance of understanding local epidemiology. If done
well, needs assessment could help to identify gaps in local
health care provision or areas where existing services need to be
redesigned or improved. However, to do it well requires
accurate and up-to-date epidemiological data such as that
provided by this study. This is not to imply that every district
should undertake a similar study to ours, but that in applying
such estimates from elsewhere it is certainly worth considering
how applicable any such published data may be to the local
area.
Acknowledgements
We wish to acknowledge the financial support of the
former Northern Regional Health Authority Research and
Development Directorate.
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