B Ahlsiö, M Britton, V Murray and T TheorellDisablement and quality of life after stroke.

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886 Disablement and Quality of Life After StrokeBERIT AHLSIO, MONA BRITTON, M.D., VERONICA MURRAY, M.D., AND TORES THEORELL, M.D.*

SUMMARY This study concerns the quality of life of patients after stroke and how this is influenced bydisablement and emotional factors. Ninety-six consecutive patients of mean age 71 years were followed fortwo years. At the end of that time 23% had experienced a recurrence of stroke and 27% were deceased. Ofthe survivors 76% were independent as regards activities of daily life (ADL) and lived in their own homes.Age as well as initial function were prognostically important factors. Patients who could participate ininterviews marked on a visual analogue scale their evaluation of quality of life before and after stroke. Mostof them had experienced a decrease and no improvement was observed during the two years. The deteriora-tion was more pronounced in ADL dependent patients than among the independent. However, depressionand anxiety were found to be of similar importance for quality of life as was physical disablement. Thesefindings call for a greater emphasis on psychological support in the care of post stroke patients. The visualanalogue scale can be a useful tool for detecting special needs.

Stroke Vol 15, No 5, 1984

THERE HAVE BEEN SEVERAL REPORTS on theprognosis of stroke patients as regards mortality andrisk of recurrence.' -2 There is less knowledge about thefrequency with which long-standing disability devel-ops. Most information stems from studies of selectedpatients referred to rehabilitation centers.3 Also thequestion of the quality of life of the average strokesurvivor needs exploration. Our intention was there-fore to study these factors in consecutive patients treat-ed in a stroke unit.

Material and MethodsIn a defined catchment area of Stockholm with

120,000 inhabitants, all patients who sought acutemedical advice were taken care of in the SerafimerHospital. Stroke cases, including transitory ischemicattacks (TIA), were transferred to the Stroke Unit ac-cording to availability of beds. It has previously beenshown that the unit treats about half, and a representa-tive part, of all strokes admitted to the hospital.4 Fur-thermore, patient mean age, distribution of previousdiseases and diagnoses as well as mortality were simi-lar to those of stroke patients in population studies.5"*

Criteria for the different diagnostic categories aswell as the organization and routines of the unit havebeen decribed elsewhere.7 During the year 1979, 113patients were admitted. Of these, 9 died during theacute phase and 8 were not included in the follow-upfor other reasons: 5 moved to other parts of the countryor abroad; 2 refused; 1 was transferred to another hos-pital for uremia treatment.

Among the 96 patients participating in the study,60% were male and 40% female. Their mean age was71 years (range 35-90). One fifth had previously hadstroke or TIA. The present diagnoses were: Hemor-rhage 5%, thrombosis 60%, embolism 11%, TIA 22%and unspecified 2%.

The treatment program in the unit included medicalmeasures, rehabilitative nursing, physical and occupa-tional therapy. This was continued to various extents

From the Karolinska Institute. Stockholm; Department of Medicineat Danderyd Hospital, and the National Institute of Psychological Fac-tors and Health.*

Address correspondence to: Mona Britton, M.D., Department ofMedicine, Danderyd Hospital, 182 88 Danderyd, Sweden.

Received June 13, 1983; revision # 3 accepted April 19, 1984.

for patients transferred to geriatric hospitals and forthose who returned home and still needed training.

The capacity of the patients as regards activities ofdaily life (ADL) was recorded according to the indexworked out by Katz.8 This estimates the degree of careneeded by a subject and is one of the most carefullytested indices available. The best ADL group A con-sists of patients independent in feeding, continence,locomotion, toileting, dressing and bathing. Theletters B-F signify gradually increasing disablementand G stands for dependence in all the mentionedfunctions.

At each follow-up, patients were also interviewedby means of a structured questionnaire. The conceptquality of life can be defined as the experienced degreeof satisfaction of human needs.9 In our opinion, andthat of some others,10 this must be a subjective meas-ure, a person's own appreciation of his life situation.This will usually depend on his physical well-being,psychological situation, living conditions, relationsand opportunities for meaningful activities. Theseitems were therefore explored during the interviews.The aim was to study how much a stroke, with variousdegrees of subsequent disablement, affected the long-term situation for a person. However, it appears im-possible to decide which factors, and their relativepriority, are of importance for another individual'sevaluation of his life. Thus, rather than applying arating scale constructed for use by physicians," wewanted to know how a patient, with his/her own oper-ational definitions, perceived the global quality of lifebefore and after stroke. The questionnaire thereforeended with a summing-up graph in the form of twobars graded with "worst possible" at the bottom and"best possible" at the top (fig. 1). The patient wasasked to mark on the left bar his/her quality of lifebefore the stroke and on the right bar his/her presentone. He had no access to earlier graphs when reexam-ined. The difference in height before and after strokewas calculated. This technique builds upon the visualanalogue scale suggested by Huskisson.12 Our modifi-cation consisted of a measure of change rather thanstatic conditions.

The understanding of the analogue scales was testedin the following way: Changes in quality of life markedon the bars were validated against interview answers(three questions about the total life situation with 5-

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DISABLEMENT AND QUALITY OF LIFE/Ahlsio et al 887

B*it poialbla

Change in qualityof llf* after stroke

Worst possible.

FIGURE 1. Quality of life graphs. After each interview thepatient marked on the left bar his/her quality of life beforestroke and on the right his/her present one.

grade answers). Increasing degree of change as ex-pressed verbally was thus found to correspond to in-creasing change of quality of life calculated from thegraphs (from a minimum of — 1,8 to a maximum of-44 ,8 ) .

StatisticsFor testing differences of proportions, the chi-

square test with Yates' correction was applied. Fortesting differences of means a two-tailed t-test wasused for independent measures and a paired t-test forcorrelated.

ResultsSocial Conditions

At the time of stroke 46 of the 96 patients weremarried, 16 single or divorced and 34 widowers/wid-ows. Altogether 52 were living with other persons and44 alone. Fifteen per cent belonged to the highest so-cio-economic group, 42% were middle class and 43%workers. Twenty persons were working outside home.The remaining patients were housewives or had oldage pensions.

At discharge from the Stroke Unit, 55 of the 96patients could go back to their own homes, whereas 41were transferred to geriatric hospitals for further reha-bilitation or care (fig. 2). Some of the latter could later

TIME AFTER BTROKE

move home. Others, mostly due to new strokes oraccidents, had to move in the other direction. At theend of the study 26 (27%) of the patients were de-ceased, 54 (56%) were living at home and the remain-ing 16 (17%) were in geriatric hospitals.

On most instances, ADL capacity was decisive for apatient's opportunity to live at home. Those who need-ed constant care by others for the basic ADL usuallyhad to be treated in a geriatric hospital. Only six suchpatients could eventually be transferred home. Theywere all male and had an able wife who had acceptedthe nursing task, sometimes supported by a day carecenter. Eleven patients were at some time during fol-low-up treated in a geriatric clinic although they be-longed to the best ADL group. Eight needed care dueto severe aphasia ordisorientation, qualities not evalu-ated in Katz index unless influencing ADL. Five pa-tients had gradually improved and were just about toleave hospital at the time of investigation.

New Strokes and MortalityDuring the study period 22 patients (23%) suffered

new strokes. Twenty-six patients died (27%). Causesof death were: complication to the initial stroke (5patients); new stroke (10); ischemic heart disease (5);aortic aneurysm, gangrene (3); neoplasm, uremia (3).

ADL CapacityFor the whole group the ADL capacity improved

gradually with time after stroke. At the acute stage55% were in group A compared to 76% of the survi-vors at the end of the study. The 26 patients who diedhad been more disabled initially than those who sur-vived for two years. Part of the total improvement,therefore, was due to the death of the worst struck. Ascan be seen from table 1, however, another part wasdue to a favorable change of ADL in many cases,especially during the first 6 months after stroke.

At 19 follow-up investigations a deterioration ofADL was noted (table 1). Two patients in a bad condi-tion, with gradual worsening, accounted for five ofthese deteriorations. The remaining 14 occurred in asmany patients: 7 had a new stroke; 2 broke a leg; 2were injured in accidents; 2 had a leg amputated.Movements between independent and dependent ADLgenerally resulted in transfers between home and geri-

Home

QorlatrHchospital

Deceased

FIGURE 2. Flow chart as regards living conditions and mor-tality during two year follow-up of 96 patients discharged alivefrom a stroke unit.

TABLE 1 Changes of ADL Croup during Three Periods afterStroke and Totally, from the Acute Stage to the End of the Study

Period after stroke

ADL capacity

Constant

Improved

Deteriorated

Deceased

Total

Totally,1 week- 1 month- 6 months- 1 week-1 month 6 months 2 years 2 years

No. of patients

66

27

1

2

96

67

16

8

3

94

54

6

10

21

91

40

20

10

26

96

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888 STROKE VOL 15, No 5, SEPTEMBER-OCTOBER 1984

TABLE 2 Outcome Two Years after Stroke as regards ADL Capacity and Mortality in Relation to Patient Age and InitialSeverity of Disablement

Initial age andADL capacity

< 71 years

2: 71 years

Independent

Dependent

< 71 + Independent

< 71 + Dependent

^ 71 + Independent

2: 71 + Dependent

Total

No. ofpatients

43

53

53

43

27

16

26

27

96

Independent

6 7 \ < 0.0545^

""> < 0.001

7 \50\

6 9 / < 0 0 0 1

22X

55

Outcome at 2 years.

Dependent

21

15

11

26

II

38

12

22

18

%

Deceased

4 0 ^ < 001

£><0.0111

V < o.ooi19/59

27

Statistically significant differences are noted.Independent = ADL group A; Dependent = ADL group

atric hospitals. Such ADL changes therefore coincidedwith those of living conditions shown in figure 2.

At the acute stage older patients had a non-signifi-cant tendency to be somewhat worse with regard toADL. For the outcome at two years both age and initialADL were of statistically significant importance (table2). Thus younger patients with independent ADL hadthe best prognosis and older, dependent the worst re-garding mortality as well as independent function (p <0.001). This does not mean that a great number ofdisabled patients remained in a bad condition for twoyears. In fact, this happened in only seven of initially43 cases. The remainder either improved to independ-ence or died.

Quality of LifeAt each examination 20-24% of the patients could

not be meaningfully interviewed nor asked about theirquality of life (table 3). Seventy per cent of them wereseverely disabled compared to 23% of thosequestioned. Among patients independent in ADL iso-lated severe aphasia or dementia were reasons for non-participation.

As can be seen from table 3, most patients reported a

TABLE 3 Quality of Life after Stroke as Compared to Before,according to Scale Marks at the Different Interviews

Time after stroke

Quality of life1 week 1 month 6 months

No. of patients2 years

Constant

Improved

Deteriorated

Mean change in

quality of life

Alive, not inter-

viewed

Deceased

Total

1 ''I ''I ' lJ. 76 4 1 75 4 l 7 3 3 lJ 53J 51J 41J

„

- 1 8 - 1 9 - 2 1 - 2 4

20(21%) 19(20%) 18(20%) 17(24%)

2 5 26

96 96 96 96

decrease of quality of life after stroke. The decreaseremained rather constant during the follow-up period.This was confirmed when only the 50 patients inter-viewed on all four occasions were considered. Theirestimation of quality of life before stroke did not varystatistically significantly between the investigationsnor did the reported deterioration, although their phys-ical function improved.

Less than one third of the subjects reported un-changed or improved quality of life after the stroke.Most of them were not at all disabled. Of the 12 im-provements noted, seven were slight. In the remainingfive patients specified reasons for a positive changewere given, such as: "Felt happier, having been ableto slow down", "appreciated life more after theillness".

The importance of age, sex and social factors wasstudied. For patients on the same level of ADL ratingthere were no statistically significant differences be-tween the means of quality of life changes for men andwomen, nor for patients below or above 71 years ofage. The socioeconomic group made no difference andthose who had expressed complaints about the socialsituation did not evaluate their quality of life lowerthan the remainder.

There was, however, a correlation between changesin quality of life and ADL capacity (fig. 3). Thus, as amean, quality of life deteriorated progressively withincreasing degree of disablement. In figure 3 the re-sults from all four follow-ups are presented together.When diagrams for each investigation were plottedseparately, the results were similar. At two years, forinstance, the differences were statistically significantbetween the two A groups and between A and the twoworst groups.

Although ADL capacity thus seems to be of impor-tance for quality of life, it must be pointed out thatthere was great variation and much overlap. Quality oflife failed to improve with time as ADL did. Mostpatients without any recorded disability reported a de-crease. Among these subjects (A plus = IndependentADL and no disorientation, dysphasia or walking aids)

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DISABLEMENT AND QUALITY OF UFEJAhlsio et al 889

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S O -

30-

10-

I -«-

\*.r":

-70-

••

•

•

T

1I•

1•

i••: t! •

i- »±

r

i«

Aphan-t51

SO-23

AmJnu*n-81

SO-26

B-D

SO-31 SO-24

FIGURE 3. Relation between ADL capacity and changes inqualir\: of life after stroke. Results from all four follow-up inves-tigations are presented together. Mean \>alues of deteriorationfor each ADL group are given in the figure. A plus = Inde-pendent ADL, no disonentation, dysphasia or walking aids; Aminus = Independent ADL but disorientation, dxsphasia orwalking aids; B-D = Dependent ADL; 'SLE = Heavily depend-ent ADL.

the following reasons were spontaneously given dur-ing the interviews:

Physical ImpairmentFine motor function (10 patients); Walking ability

(5); Outdoor leisure/Travels (7); Balance/Vertigo (10);Condition (4); Tiredness (21).

Psychological DifficultiesWorries about a new stroke (16); Depression (12);

Concentration (8); Memory (6).

Medical EffectsTherapy (e.g. anticoagulants) limits freedom (3);

Investigations/Operations (8).Thus quality of life as marked on the scales seemed

to be influenced by physical as well as psychologicalfactors. Further, to study the last mentioned, answersto structured interview questions were compared withthe change in quality of life marked on the bars at theinvestigation two years after the stroke. Five questionsregarding anxiety and five regarding depressive reac-tions were selected. For each question there were fivealternative answers graded from 1 = absent to 5 =pronounced. As can be seen from table 4, it had a greatimpact on change in quality of life if the patient feltanxious or depressed. These psychological reactionsseemed as important as physical disablement for theevaluation of quality of life. To ensure that ADL dif-ferences between groups did not explain the impact ofemotional factors, patients independent in ADL werestudied separately. The observations regarding depres-sion and anxiety were thereby confirmed. Further-more, from a predictive standpoint, those patients who

were either "depressed" or "anxious" during theacute phase showed more deterioration of quality oflife after 24 months than other patients ( - 34,8 versus- 19,2, p < 0.05).

DiscussionMortality and stroke recurrence rates in the present

patients were comparable to those of other stroke stud-ies.12 The prognosis for life as well as functional ca-pacity was dependent on age and severity of disable-ment in the acute phase. However, even among theolder and worst affected only few remained in a badcondition for two years. An equally small group ofpatients improved to independence and the majoritydied.

When compared with data from stroke rehabilitationstudies, recently summarized,3 the following similari-ties and discrepancies emerged. Our patients weresomewhat older but more often independent at outset.This is due to the fact that in the other studies disabledpatients suitable for training programs had been select-ed, whereas our material also consisted of patientsbeyond such aims and of cases with mild symptoms orTIA.

The rationale for including TIA patients was thatthey, like the others, had been hospitalized for threat-ening disease symptoms, after which fear for futurerecurrences might develop. The question was howtheir quality of life was affected compared to that ofpatients who were disabled as well. The boundary be-tween the two groups was found artificial. Cerebralinfarction and lasting metabolic disturbances havebeen revealed after TIA.13 Some patients with manifeststroke recovered slightly later than those with TIA orhad very mild residues. Occasionally such residueswere also noted after what had been named TIA. Newdiseases, accidents and death occurred during follow-up in both groups. For these reasons we have nottreated TIA separately.

Despite dissimilarities of materials there was a com-mon experience in all the studies. Unless a new stroke

TABLE 4 Means of Changes in Quality of Life for Patients withand without Anxiety or Depression two years after Stroke.

Anxiety, yesno

Depression, yesno

Anxiety ordepression, yes

noADL

Worse than A plusA plus

No

14391538

2330

2033

Change inquality of life,

mean

- 4 3- 1 7- 4 7- 1 5

- 4 2- 1 1

- 3 9- 1 5

Differencebetw. yes

and no

26

32

31

24

Signifi-cance of

diff.

p < 0.01

p < 0,001

p < 0,001

p < 0,01

For comparison the mean is also given for the very best ADLgroup (A plus) and those worse.

Anxiety, yes = At least one 5-point answer (pronounced) to fiveanxiety questions.

Depression, yes = At least one 5-point answer (pronounced) tofive anxiety questions.

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890 STROKE VOL 15, No 5, SEPTEMBER-OCTOBER 1984

or other accidents occurred, disabled patients im-proved gradually with time, most pronouncedly duringthe first six months.

Our findings regarding age and initial function asprognostically important factors for recovery supportthose of Marquardsen and WHO.1-14 In rehabilitationstudies this is more questionable.3 One possible reasonfor the discrepancy is that age and function are alreadyinvolved in their selection of patients. Furthermore, aweakness of this, and the rehabilitation studies, is therelatively small sample size. Particularly this regardssubgroups. Therefore, negative findings must be inter-preted with due caution.

As claimed by its designer, Katz' score used forADL measurements turned out to be a good instrumentfor assessing the degree of care needed by a patient.8

However, independent ADL does not mean absence ofphysical disablement, which many complaints duringthe interviews stressed. Adding information about dys-phasia, disorientation and need of walking aids sub-stantially improved the estimation of a patient's situa-tion. Even so, the measures must be considered crude.Vertigo, tiredness, memory and cognitive difficulties,impairment of fine motor function and walking, oftenlimited opportunities for leisure and intellectual or so-cial functions. Thus, physical factors might be of im-portance for quality of life also in ADL independentpatients.

However, quality of life was not influenced by thesefactors alone. Signs of depression, and also of anxiety,were of similar importance. This seems highly plau-sible and is supported by recent reports showing de-pression to be a common and serious problem in thepost-stroke period.15 Somewhat surprising was the ob-servation that perceived quality of life did not improveduring follow-up, although ADL function did.

Against this background there is too great a discrep-ancy between efforts invested in physical rehabilitationand in psychological support. The care of stroke pa-tients calls for trials in answering questions like:Would individual or group psychotherapy be benefi-cial? Should this be arranged prophylactically as anintegrated part of post-stroke care? Is there a role forantidepressive drugs as indicated?16 If so, for whom,when, and for how long?

Under all circumstances more emphasis needs to beplaced on the importance of psychological reactionsfor a patient's quality of life after stroke. An easy wayto evaluate this in routine clinical practice is thereforeneeded. We found the graphs very useful in this con-text. They were as well understood by the patients asverbal questions on the matter. The fact that the levels

marked on the graphs correlated both to degree ofdisablement and to emotional status supports thehypothesis that the method was reasonable and reflect-ed what most people would put into the concept' 'qual-ity of life". We therefore suggest the use of the twovisual analogue scales a a short-cut for detecting whena patient's life situation is seriously affected. This canserve as a basis for further discussions about the under-lying causes and what rehabilitative measures may beappropriate.

AcknowledgmentsThis work was supported by grants from the Foundations of Clas

Groschinsky, Loo and Hans Osterman, Fredrik and Ingrid Thunng, theSerafimer Hospital and the Swedish National Association against Heartand Chest Diseases

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14. Aho K, Harmsen P, Hatano S, Marquardsen J, Smimov VE,Strasser T: Cerebrovascular disease in the community: results of aWHO collaborative study. Bull WHO 58: 113 -130, 1980

15. Robinson RG, Price TR: Post-stroke depressive disorders: A fol-low-up study of 103 patients. Stroke 13: 635-641, 1982

16. Lipsey JR, Robinson RG, Pearlson GD, Rao K, Price TR: Nortnp-tyline treatment of post-stroke depression: a double-blind study.Lancet i: 297-300, 1984

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