How does stroke restrict participationin long-term post-stroke survivors?

The consequences of stroke are a major healthconcern. The rehabilitative approach is usually toprovide rehabilitation for as long as an objectiveimprovement in the neurological dysfunction isobserved. A long-term rehabilitation program isneeded to sustain the functional status which hasbeen achieved. Stroke, when severe and withsignificant residual limitations, determines highlevels of impairment and disabilities among survi-vors. According to the new ICF terminology (1)now currently used, the concept of �participation�has replaced the former term of �handicap�. TheICF classifies conditions with regard to humanfunctioning and its restrictions in terms of twoaspects: (i) functioning and disability, and (ii)contextual factors. The former include �activity�and �participation� components: activity is definedas execution of a task or action by an individual,and participation is defined by the involvement in alife situation. Hence, participation is conceived as adynamic complex interaction between an individ-ual’s health condition, body functions, activities

(functional status), and external factors represent-ing the circumstances in which the individual lives.Reduction in disabilities and improvement inparticipation for disabled and chronically ill sub-jects become, consequently, the final aims ofrehabilitation and health policy. However, as theICF has only recently been published, no specificinstruments based on these ICF concepts have yetbeen designed. Existing instruments, such as theLHS questionnaire that we have used in this study,are based on the terminology and concepts of theformer ICIDH. The LHS was developed to quan-tify handicap and was validated among severalgroups of patients with chronic diseases, includingstroke (2–4). The LHS has been reported to be theinstrument that most closely measures �participa-tion� as defined by the ICF (5). In the LHS theitems are formulated in terms of participation andthe item categories include all components of theICF, from body function to participation.The aim of this study was to explore the

determinant factors restricting the degree of

Acta Neurol Scand 2005: 112: 157–162 DOI: 10.1111/j.1600-0404.2005.00466.x Copyright � Blackwell Munksgaard 2005

ACTA NEUROLOGICASCANDINAVICA

D’Alisa S, Baudo S, Mauro A, Miscio G. How does stroke restrictparticipation in long-term post-stroke survivors?Acta Neurol Scand 2005: 112: 157–162. � Blackwell Munksgaard 2005.

Objective – To explore the factors determining �restricted participation�in a selected population of long-term post-stroke survivors. Materialsand Methods – Seventy-three consecutive post-stroke inpatients werescored for mood and restriction in participation by means of self-administered questionnaires, respectively the Hospital Anxiety andDepression Scale (HADS/A; HADS/D) and London Handicap Scale(LHS). Neurological impairment and functional disability wereevaluated with the Unified Neurological Stroke Scale (UNSS) andFunctional Independence Measure (FIM). Results – Physicalindependence and occupation were the most severely affected domainson the LHS. UNSS, FIM, HADS/A, HADS/D scores were significantdeterminants of restriction in participation at univariate analysisperformed with each LHS domain. FIM score and emotional statusfinally emerged as the independent determinants of restrictedparticipation for the LHS domains most related to body function(mobility, physical independence, occupation). Depression was thedeterminant factor for orientation and social integration. Conclusion –Functional disability and mood disorders may independentlycontribute to the restricted participation of post-stroke patients. Mostof the LHS domains remain stable over time.

S. D'Alisa, S. Baudo, A. Mauro,G. MiscioDepartment of Neurology, Istituto Auxologica Italiano,IRCCS, �San Giuseppe� Hospital, Piancavallo-Oggebio(VB), Italy

Key words: stroke; participation; disability; depression;rehabilitation

Giacinta Miscio, Department of Neurology, IstitutoAuxologica Italiano, IRCCS, �San Giuseppe� Hospital,Strada Luigi Cadorna, 90, 28824 Piancavallo-Oggebio(VB), ItalyTel.: +39 0323 514257Fax: +39 0323 514364e-mail: gmiscio@auxologico.it

Accepted for publication June 3, 2005

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participation, as measured by the LHS question-naire, in a selected population of post-strokesurvivors at different times from the stroke onset,including very long-term post-stroke survivors.

Materials and methods

Post-stroke patients were consecutively recruitedfrom inpatients admitted to our Department forFunctional Rehabilitation, all referred from thecommunity. To avoid biased assessments, patientswith severe cognitive impairment (MMSE < 24)and aphasia were excluded and proxy interviewswere not used. None of the patients had a historyof severe psychiatric disorders (i.e. psychoticdisorders, schizophrenia, alcohol or drug abuse,delirium, dementia). The study was approved bythe Local Ethical Committee and each patient gaveinformed consent before entering the study.

Instruments

Patients were assessed through a standardized face-to-face interview, and a multidimensional assess-ment protocol was applied; the interview wascarried out before patients began their rehabilit-ation program, in such mode that it explored theirlifestyle prior to rehabilitation.Restriction in participation was assessed by the

LHS (6). The LHS provides a descriptive profile ofdisadvantages experienced in the domains ofmobility, physical independence, occupation, ori-entation, social functioning, and economic self-sufficiency. Each of the six domains of the LHS areclassified on a 6-point scale (1 ¼ no restriction;6 ¼ extreme restriction). The score range was0–30. We used the unweighted score, which hasbeen demonstrated to provide the same informa-tion as the original weighted scheme for the LHS(7).The neurological impairment caused by stroke

was assessed by the Unified Neurological StrokeScale (UNSS), which has a total score rangingfrom 0 (severely impaired) to 163 (normal neuro-logical examination) (8). Functional disability wasscored by the Italian version of the FunctionalIndependence Measure (FIM) (9). FIM item scoresrange from 1 (total assist) to 7 (complete inde-pendence), while the FIM global score ranges from18 to 126. Mood impairment was assessed with theHospital Anxiety and Depression Scale (HADS)which jointly covers the domains of anxiety anddepression (10, 11). The questionnaire is usuallysplit into two 7-item independent scales, one foranxiety (HADS/A) and one for depression(HADS/D). On either sub-scale, scores range

from 0 to 21, higher scores corresponding to aworse condition. Scores below 8 are considerednormal.

Statistics

One-way ANOVA was employed to examinedifferences in participation related to sex andmarital status of the patients. Univariate linearregression analyses were performed to identifyfactors (age, disease duration, scores on UNSS,FIM, HADS/A, HADS/D) significantly associatedwith each LHS domain. A stepwise multivariateregression analysis was successively performed,considering as dependent variable each LHSdomain, and as independent variables those thatresulted significant in the previous univariateanalysis. UNSS, FIM, HADS/A, HADS/D andLHS scores as well as age and disease durationwere all entered as continuous variables. The levelof statistical significance was set at a two-tailedP-value < 0.01. All calculations were performedusing the StatView 5.0.1 system for Windows (SASInstitute Inc., Cary, NC, USA).

Results

The definitive study population (after excludingpatients who did not meet the study criteria)comprised 73 patients (29 females, 44 males).Their mean age was 62.6 � 11.9 years (range 24–83). Mean disease duration from the stroke eventwas 5.0 � 4.4 years (range 0.2–15). The degree offunctional recovery measured by FIM was93.2 � 24.2 (range 33–126). Forty-six patientswere married, 27 single or widowed. Thirty-fourpercent of patients had a pathological depressionscore (HADS/D ‡11) and 20.3% a pathologicalanxiety score (HADS/A ‡ 11).A significant proportion of patients reported

moderate to severe disadvantage in each LHSdomain (scores ‡4) (Fig. 1): mobility (21.9%),physical independence (39.7%), occupation(45.2%), social functioning (17.8%), orientation(4.2%) and economic self-sufficiency (15.1%).Physical independence and occupation were themost severely affected domains.Mobility, occupation and orientation scores

tended to be worse in older patients, but this wasstatistically significant only in orientation (r ¼0.32;P ¼ 0.006). Gender had no influence on any LHSdomain. Concerning marital status, widowedpatients scored lower on mobility, physical inde-pendence and occupation, though not significantly.In Table 1, we report the results of the simple

linear regression analysis between LHS domains

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and the continuous variables included in the study.Physical impairment (UNSS) and functional dis-ability (FIM) correlated with mobility and physicalindependence, thus reflecting the restrictions toactivity and participation due to impaired bodyfunction and functional status.Occupation, expressing the restriction due to

health status in patients� work or leisure activities,showed a high relationship with both physicallimitations (UNSS–FIM) and mood status(HADS/A–HADS/D). Social integration washighly related to depression state. Orientationwas poorly related to age and emotional status.Finally, economic self-sufficiency showed no rela-tionship with any of the variables examined.

Stepwise multivariate regression analysis wassuccessively performed to identify factorsindependently associated with each domain of theLHS questionnaire. In the statistical model, foreach LHS domain we included only those factorsthat were significant (P < 0.01) in the previousunivariate analysis (Table 1). Explained variancefor the final models of the LHS domains rangedbetween 14% (social integration) and 52% (phys-ical independence).The FIM score was the variable which explained

most of the restriction in participation in the LHSdomains of mobility, physical independence andoccupation, in our post-stroke survivors (Table 2);however the model identified emotional status as

Table 1 Simple regression analysis between LHS domains, and the most significant variables

Variables Age Disease duration UNSS FIM HADS/A HADS/D

Mobility 0.26 (0.02) 0.13 (0.25) 0.36 (0.004) 0.46 (0.0001) 0.31 (0.008) 0.43 (0.0002)Physical independence 0.12 (0.29) 0.14 (0.22) 0.57 (<0.0001) 0.60 (<0.0001) 0.32 (0.005) 0.30 (0.01)Occupation 0.25 (0.02) 0.22 (0.59) 0.43 (0.0005) 0.51 (<0.0001) 0.47 (<0.0001) 0.42 (0.0002)Social integration 0.17 (0.13) 0.26 (0.02) 0.06 (.60) 0.17 (0.16) 0.19 (0.10) 0.40 (0.0006)Orientation 0.31 (0.006) 0.02 (0.81) 0.04 (0.74) 0.09 (0.47) 0.32 (0.007) 0.36 (0.001)Economic self-sufficiency 0.03 (0.74) 0.06 (0.58) 0.16 (0.21) 0.003 (0.98) 0.26 (0.02) 0.21 (0.07)

P-values are given in parenthesis.

Physical independence

1 2 3 4 5 6

Occupation

1 2 3 4 5 6

Social integration

1 2 3 4 5 6

Orientation

1 2 3 4 5 6

Economic self sufficiency

1 2 3 4 5 6

Mobility

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Figure 1. Participation in post-stroke patients: proportion of patients in each domain of the LHS. Score 1 indicates no restriction;score 6 severe restriction.

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well as a significant variable in these domains.Social integration tended to be more restricted asthe level of depression increased. Depression alsoexplained a good part of the restriction related tothe domain of orientation, although age was alsoextracted by the model. Our model did not identifyany variables explaining economic self-sufficiency.Because our sample of patients included subjects

with very different disease duration (i.e. length oftime from onset of stroke), which ranged fromrecent onset to very long-term duration, we subdi-vided our patients on the basis of time from strokeonset into two groups (group A £2 years; groupB > 2 years) to investigate if the restriction inparticipation remained stable over time or tendedto worsen. The scores for each LHS domain in the

two groups are reported in Fig. 2. Group Ashowed a significantly higher score for occupation(t ¼ 2.7, P ¼ 0.007) and higher scores, though notstatistically significant, in the more physicaldomains (mobility, physical independence). Incontrast, for social integration, orientation andeconomic self-sufficiency, the two groups showedno difference in scores.

Discussion

The aim of the present study was to investigate thedeterminant factors restricting the degree of parti-cipation (as defined by ICF terminology) in post-stroke patients by means of the London HandicapScale (2, 7, 12, 13). The LHS is one of theinstruments most suited to measure the level ofhindrance to participation (5).Stroke survivors were found to be restricted

over a wide range of domains but the greatestdisadvantage occurred in the domains of mobility(moving from one place to another, using anyhelp, aids or means of transport), physicalindependence (in doing housework, shopping,washing, etc.) and occupation (work or leisureactivities) (Fig. 1). In fact a percentage rangingfrom 15.1% (economic self sufficiency) to 45.2%(occupation) of our post-stroke patients scoredpoorly, i.e. higher than 4, in all the LHSdomains excepting orientation, indicating arather high degree of restriction in participationin these domains. The only exception was orien-tation, in which only 4.2% of patients obtainedhigh scores. This low percentage was perhaps dueto our selection criteria which excluded patientswith severe cognitive impairments, and thus doesnot seem very reliable. It follows that the impactof limitations due to speech and cognitiveimpairments on the degree of participation isprobably underestimated in our study.Functional disability (FIM) was the most signi-

ficant variable explaining restriction in participa-tion in the LHS domains of mobility, physicalindependence and occupation in post-stroke survi-vors (Table 2), thus confirming that all these scalesare different measures covering the same area. Inother words, the effect of physical impairment isencompassed in the assessment of functional dis-ability as scored by FIM. Previous studies havedemonstrated an increased restriction in participa-tion related to the severity of disability andphysical limitation (2–4, 12, 14, 15).However we also identified emotional status as

a highly relevant determinant of such restrictionin participation. This finding highlights thedynamic complex interaction of elements on

Table 2 Independent determinant variables restricting participation in post-stroke patients*

Adjusted R 2

FSelectedvariables

Standardcoefficient P-value

Mobility 0.33 FIM )0.46 <0.000114.38 HADS/D 0.29

Physical independence 0.52 UNSS )0.30 <0.000120.55 FIM )0.42

HADS/A 0.24Occupation 0.48 FIM )0.50 <0.0001

17.96 HADS/A 0.33Age 0.22

Social integration 0.14 HADS/D 0.40 ¼0.000612.94

Orientation 0.16 HADS/D 0.31 ¼0.0017.65 Age 0.23

Economic self-sufficiency 0.05 HADS/A 0.26 ¼0.024.97

*Stepwise multiple regression analysis.

Phy

sica

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denc

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nteg

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Figure 2. Mean scores for each LHS domain in the post-strokepatients subdivided into two groups on the basis of time sincestroke onset: group A £2 years (black filled circles); group B>2 years (grey filled squares).

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which the concept of participation is based,which can be schematized as: �what can I do?�and �what do I want to do?� Depression can be acrucial element for participation, affectingpatients in getting around, in social setting orin leisure activities. Our finding of the import-ance of emotional well-being over and above therestriction in participation due to physical dis-ability is in line with previous studies (2, 3, 16,17) and underlines the importance of psychoso-cial support, both that provided by the rehabil-itation team and that from the environment, inpatients with long-term illness.Also, social integration tends to be more restric-

ted when depression is more severe. Depressionexplains a large part of the restriction in thedomain of orientation, although age also plays arole here.No variables that we included in the statistical

model showed a significant impact on economicself-sufficiency.The explained variance for the final models of

each LHS domain ranged from 14% (social integ-ration) to 52% (physical independence). Thesepercentages, although rather high in some LHSdomains, indicate that other factors have to betaken into account to explain the total variance. Infact, we have no data regarding, for instance,environmental factors, self-efficacy, motivation,coping styles – factors all able to restrict partici-pation and essential for an adequate integration ofthe individual in the community.Finally, as reports from the literature are based

on observations regarding 2-year post-stroke sur-vivors (14, 18), we investigated whether the patternof restriction in participation was different inpatients with very chronic post-stroke syndrome(>2 years). Our findings confirm that mostdomains where participation is affected are stableover time (Fig. 2). However, occupation appears tobe worse in recent post-stroke patients comparedwith more long-term patients. This could suggestthat very chronic patients may develop moresuitable coping strategies over time for a betterorganization of their work and own leisure activ-ities.In addition, the scores of mobility and physical

independence indicate a more severe restriction inrecent as opposed to more long-term post-strokepatients. It should be borne in mind that oursample of patients consisted of all inpatientsreferred to a rehabilitation department because ofan incomplete recovery: this means that eventhough there is clinical stability of the neurolog-ical condition, the functional disability may stillbenefit from a rehabilitative treatment, such as

that proposed by a recent innovative physicalapproach inducing cerebral plasticity in chronicpost-stroke patients (i.e. constraint-inducedmovement therapy) (19, 20). In contrast, therewas no difference between the two groups in thedegree of participation in relation to the orien-tation and economic self-sufficiency domains ofthe LHS. Possible explanations for this could be,respectively, the selection of patients whichexcluded moderate-severe cognitive impairmentand the organization of the Italian NationalHealth Service which assists and sustains chronicpatients over the whole length of their life, thuslessening the economic burden of the disease.The similarity of scores in the social integrationdomain of the LHS between the two groupscould be explained by a limited social supportprovided by the Italian National Health Servicein favour of disabled patients. However, ourfinding that restriction in participation tends tobe stable over time, based on the comparison oftwo different groups of patients, is tentative andneeds to be confirmed by further studies invol-ving the follow-up of a single patient group.In conclusion, the LHS enabled us to identify

the main factors to address in overcoming thedisability and disadvantage arising as a conse-quence of stroke, and provided evidence thatfunctional disability and mood disorders mayindependently contribute to restriction in partici-pation in chronic post-stroke patients, even invery long-term ones.It follows that a combination of physical ther-

apy, psychological support, combined with effect-ive economic and social resources would seem to bethe most realistic and successful approach toimprove the participation of patients after stroke.Moreover, the LHS was found to be an easyinstrument for assessing restriction in participationin chronic post-stroke patients, although weacknowledge that more suitable instrumentsshould be developed to better fit all the domainsof participation as defined in the ICF.

Acknowledgements

We thank Dr L. Tesio for his critical review of themanuscript and R. Allpress for her revision of theEnglish.

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