d i s a b i l i t y a n d r e h a b i l i t a t i o n , 1999; v o l . 21, n o . 5 } 6, 258± 268

Disablement following strokeNANCY E. MAYO‹ Œ *, SHARON WOOD-DAUPHINEE ‹ Œ ,SARA AHMED Œ , CARRON GORDON Œ , JOHANNE HIGGINS Œ ,SARA M c EWEN Œ and NANCY SALBACH Œ

‹ Division of Clinical Epidemiology, Royal Victoria Hospital, R4.29, 687 Pine Avenue West, Montreal,

Quebec H3A 1A1, Canada

ΠSchool of Physical and Occupational Therapy, McGill University, Montreal, Quebec, Canada

Abstract

Purpose : Stroke is the most disabling chronic condition,newlyaŒecting 35000 persons in Canada each year. Because ofdeclining fatality, a growing number of persons will have tocope with stroke-relateddisability.The purpose of this paper isto describe the disabilities experienced by persons with strokeduring the ® rst year and explore the evolution of impairment,disability, handicap and health-related quality of life.Subjects: The data for this paper come from a series oflongitudinal and cross-sectional studies, collectively known asthe McGill Stroke Rehabilitation Research Program.Results: Within the ® rst week post-stroke, getting out of bedand walking over a short distance, even with assistance, was astrong predictor of discharge home. Most of the improvementin measures of impairment and disability occurred during the® rst month and, by 3 months, there was still considerable roomfor improvement in all measures: 85% of persons were stillimpaired on gait speed, 78% had not reached age-speci® cnorms for upper extremity function, 68% still demonstratedslow physical mobility, 37% needed some assistance with basicactivities of daily living and 29% were still impaired onbalance. By 1 year, 73% of persons scored the maximum forbasic activities of daily living but 51 and 67% of personsreported their physical health and mental health to be lowerthan expected. Among a hardy group of stroke survivors, stillliving in the community 1 year post-stroke, the most strikingarea of di� culty was endurance, as measured by the 6 minutewalk test. Those subjects well enough to complete this task(50% of sample) were able to walk, on average, only 250metres, equivalent to 40% of their predicted ability. This seriesof snapshots taken at diŒerent points in time suggests thatmuch of the improvement in impairment and disability occursduring the ® rst month and then reaches a plateau. Handicapand quality of life continue to be issues later. Rehabilitationstrategies need to consider the multifaceted nature of dis-ablement, which in itself changes with time post-stroke.

Introduction

Stroke is the most disabling chronic condition." It has

this dubious honour because the sequelae of stroke

* Author for correspondence.

impact on virtually all functions: gross and ® ne motor

ability, ambulation, capacity to carry out basic and

instrumental activities of daily living, mood, speech,

perception and cognition. In Canada, an estimated

35000 persons are newly aŒected by stroke each year and

the proportion of persons surviving is increasing.# Stroke

is diŒerent from many other disabling conditions in that

the onset is sudden, leaving the individual and the family

ill prepared to deal with its sequelae. Another distin-

guishing feature of stroke is that its natural history is one

of improvement over a ® nite period, usually set at the

® rst 3± 6 months. $ Thus, there are critical times in which

to intervene with the hope of improving outcome and the

relevant outcomes change as time passes. One of the

earliest concerns of those with stroke and their families is

about walking.% It is for this reason that intervention

early after stroke focuses on preventing or remediating

this disability. Later, after the period of natural recovery,

the issues for stroke outcome are related to return to

usual activities and overall quality of life.

One framework for understanding the relationship

between the sequelae of stroke and its impact on the lives

of the individuals aŒected is the World Health Organiz-

ation’ s classi® cation of impairment, disability and handi-

cap (ICIDH). & A distinct yet overlapping paradigm that

is also relevant for describing the impact of stroke on the

individual is health-related quality of life (HRQOL). ’ ± " "

Some confusion exists in the literature about the

relationships within and between each framework. * , " # ± " &

For example, there are subtle diŒerences in how disability

and handicap are de® ned and operationalized and, as

pointed out by Shaar," ’ these terms have often been used

interchangeably. Table 1 presents some de® nitions of

these various constructs. There seems to be consensus on

impairment but considerable disagreement and diversity

on disability. What the WHO & and Wade" ( call disability

has been termed `functional limitations’ by Nagi " ) and

Disability and Rehabilitation ISSN 0963-8288 print} ISSN 1464-5165 online ’ 1999 Taylor & Francis Ltdhttp: } } www.tandf.co.uk} JNLS } ids.htm

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Disablement following stroke

Table 1 De® nitions of impairment, disability, handicap and quality of life

Construct De® nitions

Impairment WHO& : loss or abnormality of anatomical, physiological or psychological structure or function

Wade# # : the immediate consequence of pathology as perceived by the individual; impairments aŒect actions which in

themselves have no meaning

Nagi" ) : loss or abnormality of an anatomical, physiologic, mental, or emotional nature which results in functional

limitations

Verbrugge" $ : dysfunctions and structural abnormalities in speci® c body systems

Duckworth( % : bits that won’t work

Disability WHO& : restriction or lack of ability to carry out activities in an appropriate or `normal’ manner

Wade# # : the eŒect of pathology or impairment has upon actions which have some meaning to the person

Nagi" ) : an inability or limitation in performing or ® lling socially de® ned roles and tasks expected of an individual

within his or her sociocultural and physical environment

Verbrugge" $ : di� culty doing activities of daily life: job, household management, personal care, hobbies etc.

Duckworth( % : activities that can’t be carried out

Handicap WHO& : disadvantage to a given individual, resulting from an impairment or disability that limits or prevents the

ful® lment of a role that is normal for that individual

Wade# # : the freedom the person has lost due to the pathology; it is judged with reference to the cultural, social,

economic and physical environment of the individual

Quebec" * : disadvantage for an individual arising from impairments, disabilities and physical, social and environmental

obstacles

Duckworth( % : roles that can’t be performed

Health-related Kaplan( & : impact of disease and treatment on disability and daily function

quality of life Greer ( ’ : physical, emotional and social well-being after diagnosis and treatment

Guyatt" " : all those things that one might want to measure about the health of an individual beyond death and

physiologic measures of disease activity

Patrick( ( : a measure of the value assigned to duration of life as modi® ed by impairments, functional states, perceptions

and opportunities, as in¯ uenced by disease, injury, treatment and policy

Verbrugge." $ In turn, their de® nitions of disability are

much closer to the WHO’ s de® nition of handicap. In

Quebec, " * the importance of social and environmental

factors have been emphasized in the de® nition of

handicap. Wade considers handicap to be similar to

quality of life. Others would consider that quality of life

is aŒected by components of impairment, disability and

handicap without being equated with these. But HRQOL

is also aŒected by other factors and therefore is broader

than the sum of some these parts would imply.

As shown in table 1, many authors have rede® ned

the ICIDH and have used slightly diŒerent termin-

ology" $ , " ) , # ! ± # # but there is an overall consensus that an

understanding of factors leading to disability and

handicap is essential for selecting interventions and

services that may prevent either of these outcomes and

will ensure that persons realize their full potential after

stroke.

There is a large literature describing the impairments

and disabilities that follow stroke. # $ ± $ ! Less is written

about handicap after stroke, yet the issue of handicap is

considered of paramount importance for persons with

spinal cord injury $ " ± $ & and traumatic brain injury.$ ’ ± % "

One can ask whether the concept of handicap is not

considered as relevant for older persons. On the other

hand, there is an increasing focus on health-related

quality of life post-stroke % # ± & " and even less is known

about the interrelationship between stroke sequelae and

health-related quality of life.% # , % ( , & # ± & %

The problem of stroke in Canada

Stroke is the third leading cause of death in the

population& & and is a leading cause of disability in the

community. & ’ , & ( Of the approximately 35000 individuals

who are hospitalized for acute stroke each year in

Canada,# 20% will die before leaving the acute care

setting,# 50% are discharged home, 10% go to inpatient

rehabilitation centres, and 15% require long-term

care.& ) , & * Over the past decade in Canada there has been

a 10% decline in the rate of hospitalization for cerebral

infarctions, from approximately 180 per 100000 persons

in 1982 to 160 per 100 000 in 1991. However, the rate of

hospitalization for intracerebral haemorrhage increased

by approximately 40% from 11 per 100000 to 16 per

100000.# There is also the suspicion that the strokes are

becoming, if not less frequent, less devastating.# , ’ ! ± ’ $

Owing to the increasing size of the older population,

the absolute number of persons with stroke is increasing.

This, coupled with the increase in the proportion of

259

N. E. Mayo et al.

Table 2 Measures of impairment, disability, handicap and quality of life used in McGill Stroke Rehabilitation Research Program

Score range

Construct Instrument Task Metric (age & 65-speci® c norm)

Grip strength Dynamometer Squeeze handle three times (maximum kg (Men: R 35 kg, L 30 kg

value taken) Women: R 21 kg, L 18 kg( ) , ( * )

Upper extremity Box and Block Test of Transfer 2.5 cm blocks from one No. of blocks 0± 150 (65} min)

function Manual Dexterity) ! side of a box to the other transferred in 1 min

Frenchay Arm Test ( " Performance on ® ve functional manual Pass } fail 0± 5

tasks

Motor recovery STREAM) " Performance on 30 tasks involving Continuous index Scored 0± 70; converted to

0± 100%

upper and lower extremity movements

and general mobility

Balance The Balance Scale) # Performance on 14 tasks related to Quasi-continuous 0± 56 ( ! 45 considered impaired)

maintaining or changing position as index

base of support diminishes

Basic ADL Barthel Index) $ Performance on 10 basic self-care and Quasi-continuous 0± 100

mobility tasks index

Instrumental ADL OARS} IADL ) % Amount of assistance needed to do Quasi-continuous 0± 14

seven common daily activities index

(telephoning, shopping, managing

money, etc.)

Physical mobility Timed `Up and Go ’ ) & Stand up from sitting, walk 3 m, return Time (s) ( ! 10 s)

and sit

Ambulation Gait speed Walk 10 m at comfortable pace Time (s) ( ! 9 s) ) ’

Endurance 6 Minute Walk) ( Distance (m) walked in 6 min Metres (m) ; % ( " 635 m) ; 0± 100%

predicted

Satisfaction with RNL) ) Degree of satisfaction with activities Quasi-continuous 22± 0

community and roles in community or family index

re-integration

Physical health SF-36) * , * ! Items on self-care, physical, social and Continuous index (41.3)

role activities; pain; fatigue, general

health

Mental Health SF-36) * , * ! Items on psychological distress, social Continuous index (51.8)

and role activities limitation due to

emotional problems and general health

persons surviving acute stroke, means that the number of

persons learning to cope with stroke-related disability

each year is also increasing. This paper will provide

examples of these disablements.

The purpose of this paper is to describe the disabilities

experienced by persons with stroke during the ® rst year

after the acute episode and to explore the evolution of

impairment, disability, handicap and health-related

quality of life.

The data for this paper come from a series of studies

conducted at McGill University by a team of researchers

and students who work within a research programme

directed towards reducing the impact of impairment,

disability and handicap on the individual, the family and

society. The studies on stroke are collectively grouped as

the McGill Stroke Rehabilitation Research Program. All

of the studies that involved active data collection on

individuals, either through interviews or evaluation of

performance, required consent. This process naturally

restricts the recruitment of individuals unable or un-

willing to do this.

Because information from a variety of sources was

combined to produce this portrait of the disablement

following stroke, the conventional outline for presenting

research ® ndings cannot be followed. Instead, the paper

is divided by time and the data sources contributing at

these various time points are described. Also in these

studies, a variety of constructs were measured and these

are shown in table 2 along with the instruments used and

details on the scoring or norm reference values, where

relevant.

One way of reducing the impact of stroke is through

the understanding of the interrelationships between these

constructs, an understanding that will lead to focused

interventions at critical times during the life experience of

a person with stroke. This paper will deal mainly with the

260

Disablement following stroke

impact of stroke on various aspects of physical func-

tioning of the individual. It would be beyond the scope

of one paper to deal adequately with the very con-

siderable impact of stroke on other aspects of function;

nor is it possible to do justice to the impact of stroke on

the immediate family and on society at large.

The ® rst 3 months

One of the ® rst questions asked by someone after a

stroke relates to walking.% In the acute phase post-stroke,

a person’ s ability to walk is in¯ uenced not only by the

physical impairment but also by comorbid conditions

and medical interventions that require bed-rest. En-

hancing recovery of ambulation during this early period

is often restricted to evaluating the individual’ s ability to

get out of bed and walk for a short distance ; the crucial

factor is whether or not assistance from another person

is needed. The extent to which this crude level of

ambulation is achieved, by persons with diŒerent

neurological de® cits, over the course of acute-care

hospitalization is depicted in ® gure 1. The data for this

estimation come from a cohort of 2132 persons admitted

to 13 Montreal area acute-care hospitals during 1991.& )

The level of ambulation was abstracted from daily notes

written by doctors, nurses and therapists in the medical

Figure 1 Timing of recovery of independent or assisted walking according to speci® c neurological de® cits.

chart. In addition to age, recovery of ambulation was

in¯ uenced by the type of stroke, the type of de® cit, the

number of de® cits, and incontinence. This graph illus-

trates that di� culty in ambulation in this early phase

post-stroke is governed more by neurological status

(coma, drowsiness, etc.) than motor de® cits (lower

extremity weakness).

This measure of ambulation is crude and basically

re¯ ects the ability to attain the upright position and

move around the protected hospital environment, with

or without physical assistance from another person.

However, discharge destination upon leaving the hospital

can be predicted by ambulatory status as early as 7 days.

Table 3 shows that 86% of persons who were ambulatory

at 7 days went home compared to only 26% of persons

who were non-ambulatory. Using logistic regression and

controlling for age, sex, comorbidity, social support,

diagnosis and hospital, the odds ratio (OR) of being

discharged to an institution (either long-term care (LTC)

or rehabilitation) versus going home, if unable to walk

by 7 days, was 32.7 (95% con® dence interval 21.5 to

49.8). For persons needing assistance to ambulate at 7

days, the OR for discharge to LTC or rehabilitation

instead of home was 4.2 (95% CI 2.7 to 6.6). Ambulatory

status at 7 days was not a factor distinguishing between

discharge to rehabilitation or discharge to LTC. Here,

261

N. E. Mayo et al.

Table 3 Destination at discharge according to ambulatory status at 7 days post-stroke

Independent With assistance Non-ambulatory

Destination (n 5 626) (n 5 347) (n 5 764)

Home 540 (86.3%) 228 (65.7%) 199 (26.0%)

Rehabilitation hospital 18 (2.9%) 39 (11.2%) 171 (22.7%)

Long-term care facility 49 (7.8%) 56 (16.1%) 228 (29.8%)

Transferred to another 19 (3.0%) 24 (6.9%) 166 (21.7%)

acute care hospital

Columns may not add to 100% because of rounding. Chi-squared test 5 643.1; 6 d.f. ; p ! 0.001. Percentages are among persons with a given level

of ambulatory status. Odds ratios are given in text. Data from an unselected historical cohort of all stroke admissions to 13 Montreal area acute care

hospitals in 1991; ambulatory status obtained for persons surviving acute episode.

Table 4 Evolution of selected indices of impairment and disability during ® rst 3 months post-stroke

Initial evaluation 1 month 3 months

Construct n Mean (SD) n Mean (SD) n Mean (SD)

Time since stroke (days) 119 8.9 (4.0) 102 32.3 (4.1) 73 90.5 (6.5)

Upper extremity function

Grip strength (kg) 60 17.6 (13.7)a 52 22.0 (14.9)c 36 21.8 (15.3)

Box and Block (0 to 150) 56 25.3 (20.4)a 47 38.6 (21.6) 34 41.7 (21.2)

Frenchay Arm Test (0± 5) 56 3.0 (2.3)a 47 3.7 (2.0) 34 4.1 (1.5)

Motor recovery (0± 100) 114 58.0 (16.7) 102 66.9 (11.2) 73 68.3 (8.2)

Balance (0 to 44) 49 37.6 (17.7)a 42 48.3 (10.0) 28 49.4 (7.8)

Basic ADL (0± 100) 119 77.8 (21.9) 102 90.0 (15.9) 73 94.4 (10.0)

Physical mobility

Timed Up & Go (s) 111 39.3 (16.8)b 99 18.1 (14.8) 72 15.2 (11.2)

Comfortable gait speed (s) 50 43.3 (23.2)b 43 15.5 (12.6) 27 17.9 (14.2)

Instrumental ADL (0± 14) NA 33 9.6 (3.5) 10.2 (4.0)

Community integration (22 to 0) NA 33 6.7 (4.0) 5.7 (5.3)

NA 5 not assessed at this time period; grip strength is for aŒected hand.a Persons (13, 17, 19, and 4) who were unable to do the test were scored 0 for purposes of estimating a mean; these persons were excluded for

estimation of standard deviation.b Persons (10 and 4) who were unable to do the test were scored at twice the maximum score for purposes of estimating a mean; these persons were

excluded for estimation of standard deviation.c Data obtained from persons participating in a randomized trial of home rehabilitation for stroke and a study of short-term recovery post-stroke.

Selection criteria excluded persons with cognitive and language impairments, unable to walk or fully recovered. An additional selection criteria for

clinical trial was the presence of a care giver. Both studies required informed consent.

the only strong predictor was age, with older persons

more often going to LTC.

Once it is clear that the person has a persistent motor

de® cit, quantifying this de® cit becomes important so that

the individual’ s progress can be monitored and planning

for future needs and services can begin. Table 4 describes

the impairments and disabilities experienced by persons

with stroke during the ® rst 3 months. The data for this

table come from the work of three graduate students

(SA, JH and NS) who were quantifying the early

recovery of physical function and gait speed post-stroke.

To date, 60 persons have participated in these studies.

They were a consecutive series of persons with persistent

upper or lower extremity de® cits following stroke who

had been admitted to one of ® ve McGill University

teaching hospitals from August 1996 until April 1997,

met eligibility criteria and agreed to participate in the

study. These subjects were on average 67 years of age

(SD: 13). The data were collected initially, at 5± 10 days

post-stroke, at 4 weeks and 3 months later. For recovery

of mobility and gait speed, persons were not assessed

until they became ambulatory as long as this was within

3 weeks of stroke onset. Added to this group of subjects

were others (n 5 59) who had been participating since

September 1995 in a randomized clinical trial on stroke

rehabilitation. These subjects had undergone a similar

protocol of evaluations.

An examination of table 4 indicates that while a

considerable amount of improvement occurred over the

® rst 3 months, most of it occurred during the ® rst month.

262

Disablement following stroke

At the end of the 3 month period, only basic Activities of

Daily Living (ADL) had approached the ceiling value of

100, with 63% of persons reaching this maximum. By 1

month, a plateau appeared to have been reached for the

other measures of impairment and disability but there

was still considerable room for improvement in these

measures even after 3 months. For example at 3 months,

85% were still impaired in terms of gait speed, 82% had

not reached age-speci® c norms for upper extremity

function as measured by the Box and Block Test, 68%

still demonstrated slow physical mobility (Timed Up and

Go; TUG), and 29% were still impaired on balance.

For handicap, a situation that becomes more evident

as time passes, two measures approximate this construct :

independence in instrumental ADL (Older American

Resource Services ; OARS } IADL) and community in-

tegration (Reintegration to Normal Living; RNL). By 3

months, persons still needed some help with an average

of four of seven instrumental ADL, or they were totally

dependent upon someone else for two of these activities.

Those with stroke were also somewhat dissatis® ed with 6

of 11 common activities necessary for reintegration into

their families or communities (e.g. ful® lling family roles,

socializing, outings, travel) or they were completely

dissatis® ed with three of these. This implies that at 3

months, there is still considerable scope for trying to

in¯ uence handicap.

The ® rst year

What happens over time in terms of recovery and

health-related quality of life? Many observers of stroke

will attest that physical recovery is largely complete by 6

months post-stroke and that additional gains are due to

learning, practice and con® dence. The present authors

had the opportunity to examine what happens over the

® rst year post-stroke owing to an ongoing study of

stroke outcome. In this study, the physical functioning,

Table 5 Evolution of selected indices of disability, handicap and health related quality of life during the ® rst year post-stroke

0± 3 months 3± 9 months " 9 months

Construct n Mean (SD) n Mean (SD) n Mean (SD)

Time since stroke (days) 119 47.2 (22.8) 81 183.5 (54.3) 70 355.8 (58.8)

Basic ADL (0± 100) 119 89.9 (16.8) 77 89.9 (18.9) 70 88.8 (22.3)

Instrumental ADL (0± 14) 119 10.3 (4.0) 78 11.0 (4.9) 65 10.7 (4.5)

Community integration (22 to 0) 119 6.0 (4.9) 74 5.2 (6.8) 62 5.5 (7.0)

Physical health (0± 50) 102 40.6 (10.3) 73 43.4 (12.4) 62 43.1 (11.7)

Mental health (0± 50) 102 45.3 (12.3) 73 47.9 (10.8) 62 46.0 (12.7)

Data obtained from a cohort of individualsparticipatingin a follow-up study on the long-term outcome of stroke. Selectioncriteria excludedpersons

with a second stroke but proxy consent was obtainedfor persons with cognitiveand language impairments. Proxy responses were not used for physical

or mental health related quality of life.

health status and quality of life of persons with a ® rst

stroke are being followed over a 2 year period, and data

are currently available on those subjects in this study.

The average age of these subjects is 69 years (SD: 12).

Table 5 presents information on measures of disability,

handicap and health-related quality of life over a 1 year

period following stroke. The subjects providing data for

this table are not the same as those in table 4. Subjects

providing data for table 5 were participating in an

observational study that did not have such strict

eligibility criteria as did the previous studies. The

participants did not have to perform tests but rather the

assessments were based on interviews, and if the patients

were unable to respond for themselves, a proxy was

interviewed. This is the primary reason why the values on

the measures are indicative of lower functioning. Again,

there was little change in these measures over time, and

scores indicate that a considerable proportion of persons

remain with high levels of disability and handicap.

Interestingly, the average score on the physical health

component of the quality of life measure (the Measuring

Outcome Study 36-Item Short-Form Health Survey ; SF-

36) was within normal limits by 1 year, but 51% of

persons reported values lower than expected. For mental

health, the proportion reporting lower than norm-

referenced values was 67%. In contrast, 73% of persons

scored the maximum on performance of basic ADL

(Barthel Index).

Relationship between ICIDH and HRQOL

The present authors have learned about the inter-

relationships between some of these constructs from two

studies that contacted community dwelling stroke sur-

vivors 6± 12 months post-stroke. A total of 90 persons

were evaluated at home (by CG and SMc) for these two

studies. They represent, however, a robust group of

survivors discharged home from two large Montreal area

263

N. E. Mayo et al.

Table 6 Cross-sectional snapshot of selected indices of impairment, disability, handicap and health-related quality of life 9± 12 months post-stroke

Number of

Construct subjects Mean (SD)

Upper extremity function

Grip strength (kg) 46 21.3 (9.0)

Box and Block (0± 150) 44 49.0 (18.4)

Basic ADL (0± 100) 90 94.5 (11.1)

Physical mobility (TUG} s) 90 11.9 (12.0)

Endurance (m) [% predicted normal] 24 252.3 (114.8) [40%]

Instrumental ADL (0± 14) 44 11.6 (3.2)

Community integration (22 to 0) 46 4.2 (4.2)

Physical health (0± 50) 44 41.1 (11.2)

Mental health (0± 50) 44 52.2 (11.8)

Grip strength is for aŒected hand. Data were obtained from cross-sectional analyses at diŒerent points in time for subjects participating in cohort

study of long-term outcome supplemented with data from community dwelling subjects participating in study of cardiorespiratory health and health-

related quality of life post-stroke.

teaching hospitals over a 12 month period from 1993 to

1994 who were still living at home 1 year later. This

group of 90 persons came from a large cohort of more

than 300 persons admitted for stroke during this period.

More than 50% of the original cohort were deceased or

institutionalized. Others had moved away, as they were

no longer able to maintain their own dwellings. The fact

that only 90 persons were willing and able to participate

in an evaluation 1 year later illustrates the tremendous

impact of stroke on the individual, the family and society

as a whole.

Because these individuals are community dwellers,

their level of physical function had to be high. This is

illustrated in table 6. After approximately 1 year post-

stroke, their functional status, as indicated by ability to

perform basic ADL, was 94.5 (out of 100) and their

mobility was close to age-speci® c norms : TUG 11.9

seconds. HRQOL was also within the range of their

peers. The most striking area of di� culty was in

endurance, as measured by the 6 minute walk test. While

46 subjects were asked to complete this task, only 24

persons were able to do so. Those subjects who did

complete this task were able to walk, on average, only

250 metres compared to the age-predicted distance of

over 600 metres. Thus, they achieved only 40% of their

predicted normal distance. In a multivariable linear

regression model with community integration (RNL) as

the outcome, endurance was the only impairment or

disability measure that had a statistically signi® cant

association. Figure 2 illustrates the relationships between

the components of ICIDH in this particular group of

stroke survivors. This ® gure illustrates that endurance

itself was in¯ uenced by several impairment and dis-

ability-related measures (grip strength, function and

mobility) along with pre-stroke status, but that these

Figure 2 Relationship of handicap to patient characteristics, impair-ments and disability.

other measures did not have any direct in¯ uence on

handicap (RNL) except through endurance (6 minute

walk).

In the part of the study that examined performance

based correlates of HRQOL, ability to carry out

instrumental ADL and upper extremity function (Box

and Block) were the only two constructs with any

relationship to HRQOL and even then, the relationship

was weak.

Discussion

Obtaining accurate information about disablement

following stroke is very di� cult. First, stroke is an

extremely heterogeneous disease and hence the base

populations from which study samples are drawn must

be known and their characteristics understood. In this

264

Disablement following stroke

overview of disablement post-stroke, data were presented

from a number of separate studies, each one with its own

characteristics. For example, in the ® rst series of studies

on recovery in the short term, performance based

measures were administered and this required consent on

the part of the participant. Clearly, persons with

cognitive or language impairments were excluded. In

addition, as mobility and recovery of physical function

were under study the persons included had to have a

de® cit in one of the domains but not one so severe as to

impede testing altogether. In the examination of evol-

ution over the ® rst year post-stroke, a wider range of

patients was eligible because direct patient consent was

not required owing to the observational nature of the

data collection. Thus, this group includes patients with

more severe strokes.

What is crucial, however, is that persons with stroke

were recruited from the source population and not after

referral to specialized programmes. In this group of

studies, the starting point for enrolment was the acute-

care hospital and while some patients were referred to

specialized rehabilitation facilities, they were not iden-

ti® ed from these specialized centres. Of course, not all

stroke patients are admitted, and with ever diminishing

hospital resources, persons with milder strokes may

increasingly be managed on an outpatient basis, pre-

cluding their enrolment in studies such as these.

Another di� culty is in choosing measures of the

outcomes of interest. Not only are there diŒerences in

how basic terms in the ICIDH } HRQOL model are

de® ned but there are numerous measures of these

constructs and each particular study will choose a

diŒerent set based on needs and conventions of that time

and location. In addition, some measures require direct

observation of the person performing the tasks, others

are interview-based and still others rely on proxy

responses. The level of disability will depend on how it is

measured. In general, measures that rely on objective

recordings of performance of speci® c tasks are attractive

from a statistical point of view, but they demand the full

cooperation of the participant and they are resource

intensive. Measures that rely on subjects reporting on

their feelings or ratings of their ability to carry out

speci® c activities usually need a high degree of language

and cognitive ability. The capacity of persons with stroke

to complete one or more of the measures will also change

over time. For example, the SF-36 is very di� cult to

complete shortly after stroke but as time passes, more

and more subjects are able to complete this ques-

tionnaire. This is also true of tasks like the TUG or the

measurement of gait speed that require safe ambulation.

Those that can perform these tasks early after stroke are

often less impaired and, therefore, have less potential for

improvement. Those unable to do the tasks initially are

often able later and if these persons are not included,

their high degree of improvement does not contribute to

the overall portrait of stroke recovery. It is sometimes

necessary to impute a value for those unable to

accomplish the task. This has implications for changes

over time. In these studies, values of twice the highest

score were assigned for persons unable to complete tasks

that required timing such as the Box and Block Test,

TUG and gait speed. This imputed value was used to

adjust the mean but was not used in the calculation of

standard deviation.

With all this said, it is possible to patch together a

portrait of the disablement following stroke. This series

of snapshots taken at diŒerent points in time suggest that

much of the improvement after stroke occurs during the

® rst month. This rapid short-term improvement was

most evident for measures of impairment and disability

(grip strength, Box and Block Test, Stroke Rehabilitation

Assessment of Movement (STREAM), Balance Scale,

TUG, gait speed). These were also the same measures

which tended to plateau by 1 month. Does this observed

plateau re¯ ect the natural history or imply a failure of

rehabilitation? For almost all of the sample, rehabili-

tation had ceased before the 3 month evaluation, and

those persons who were still receiving rehabilitation were

the most impaired at onset.

Several studies have demonstrated that rehabilitation

post-stroke is eŒective" ( , ’ % ± ’ * and variability in access to

rehabilitation could be a factor in¯ uencing some of the

outcomes. However, studies of natural history after

stroke have agreed that recovery of upper extremity

function and gait speed occur within the ® rst 3 months

and in many instances earlier. # * , ( ! ± ( #

During the second half of the ® rst year post-stroke,

most persons with stroke demonstrated stability but were

experiencing the health events that are associated with

normal ageing as well as those attributed to a reduced

activity level post-stroke. Thus, it was not surprising that

improvements were not seen, but neither were deterior-

ations.

This snapshot of disablement following stroke was

presented in order to raise questions about what needs to

be addressed in the rehabilitation of stroke, rather than

to answer questions. Ongoing research by the authors ’

team and by others ’ ( will address some aspects of how to

improve the outcome of stroke, but there is still much to

be done. For example, have we developed rehabilitation

strategies that maximize outcome in the short term, as

this period seems to be critical? Are we doing as much

for persons with stroke later in the course of the disorder

265

N. E. Mayo et al.

in an eŒort to combat the eŒects of inactivity and to

minimize the eŒects of normal ageing?

Understanding the relationships between the sequelae

of stroke will guide treatment decisions. For example,

the strong relationship of endurance (as measured by the

6 minute walk) with community integration (RNL) (see

table 6) would suggest that rehabilitation strategies

targeted to improve endurance could have an impact on

reducing handicap. Ability to carry out instrumental

ADL and upper extremity function (Box and Block)

were two constructs related to health-related quality of

life, suggesting that rehabilitation strategies focusing on

these areas would be important. Other researchers have

demonstrated the treatment implications of understand-

ing the factors in¯ uencing an important stroke outcome.

Olney et al. (1994)( $ illustrated which components of gait

in¯ uenced gait speed and suggested treatment strategies

targeted to speci® c components that would potentially

aŒect outcome.

As knowledge of the disablement occurring after

stroke improves and the multifaceted nature of disability

is focused upon, so will rehabilitation strategies be more

focused and the potential for eŒectiveness of rehabili-

tation be enhanced. The ultimate aim of rehabilitation

post-stroke is to reduce impairment, disability and

handicap and to enhance the quality of life of stroke

survivors. We have not yet done all we can.

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