Disablement and Quality of Life After Stroke

Transcription

1 886 Dsablement and Qualty of Lfe After Stroke BERIT AHLSIO, MONA BRITTON, M.D., VERONICA MURRAY, M.D., AND TORES THEORELL, M.D.* SUMMARY Ths study concerns the qualty of lfe of patents after stroke and how ths s nfluenced by dsablement and emotonal factors. Nnety-sx consecutve patents of mean age 71 years were followed for two years. At the end of that tme 23% had experenced a recurrence of stroke and % were deceased. Of the survvors 76% were ndependent as regards actvtes of daly lfe (ADL) and lved n ther own homes. Age as well as ntal functon were progstcally mportant factors. Patents who could partcpate n ntervews marked on a vsual analogue scale ther evaluaton of qualty of lfe before and after stroke. Most of them had experenced a decrease and mprovement was observed durng the two years. The deteroraton was more prounced n ADL dependent patents than among the ndependent. However, depresson and anxety were found to be of smlar mportance for qualty of lfe as was physcal dsablement. These fndngs call for a greater emphass on psychologcal support n the care of post stroke patents. The vsual analogue scale can be a useful tool for detectng specal needs. Stroke Vol 15, No 5, 1984 THERE HAVE BEEN SEVERAL REPORTS on the progss of stroke patents as regards mortalty and rsk of recurrence.' - 2 There s less kwledge about the frequency wth whch long-standng dsablty develops. Most nformaton stems from studes of selected patents referred to rehabltaton centers. 3 Also the queston of the qualty of lfe of the average stroke survvor needs exploraton. Our ntenton was therefore to study these factors n consecutve patents treated n a stroke unt. Materal and Methods In a defned catchment area of Stockholm wth 120,000 nhabtants, all patents who sought acute medcal advce were taken care of n the Serafmer Hosptal. Stroke cases, ncludng transtory schemc attacks (TIA), were transferred to the Stroke Unt accordng to avalablty of beds. It has prevously been shown that the unt treats about half, and a representatve part, of all strokes admtted to the hosptal. 4 Furthermore, patent mean age, dstrbuton of prevous dseases and dagses as well as mortalty were smlar to those of stroke patents n populaton studes. 5 "* Crtera for the dfferent dagstc categores as well as the organzaton and routnes of the unt have been decrbed elsewhere. 7 Durng the year 1979, 113 patents were admtted. Of these, 9 ded durng the acute phase and 8 were t ncluded n the follow-up for other reasons: 5 moved to other parts of the country or abroad; 2 refused; 1 was transferred to ather hosptal for urema treatment. Among the patents partcpatng n the study, 60% were male and 40% female. Ther mean age was 71 years (range 35-90). One ffth had prevously had stroke or TIA. The present dagses were: Hemorrhage 5%, thromboss 60%, embolsm 11%, TIA 22% and unspecfed 2%. The treatment program n the unt ncluded medcal measures, rehabltatve nursng, physcal and occupatonal therapy. Ths was contnued to varous extents From the Karolnska Insttute. Stockholm; Department of Medcne at Danderyd Hosptal, and the Natonal Insttute of Psychologcal Factors and Health.* Address correspondence to: Mona Brtton, M.D., Department of Medcne, Danderyd Hosptal, Danderyd, Sweden. Receved June 13, 1983; revson #3 accepted Aprl 19, for patents transferred to geratrc hosptals and for those who returned home and stll needed tranng. The capacty of the patents as regards actvtes of daly lfe (ADL) was recorded accordng to the ndex worked out by Katz. 8 Ths estmates the degree of care needed by a subject and s one of the most carefully tested ndces avalable. The best ADL group A conssts of patents ndependent n feedng, contnence, locomoton, toletng, dressng and bathng. The letters B-F sgnfy gradually ncreasng dsablement and G stands for dependence n all the mentoned functons. At each follow-up, patents were also ntervewed by means of a structured questonnare. The concept qualty of lfe can be defned as the experenced degree of satsfacton of human needs. 9 In our opn, and that of some others, 10 ths must be a subjectve measure, a person's own apprecaton of hs lfe stuaton. Ths wll usually depend on hs physcal well-beng, psychologcal stuaton, lvng condtons, relatons and opportuntes for meanngful actvtes. These tems were therefore explored durng the ntervews. The am was to study how much a stroke, wth varous degrees of subsequent dsablement, affected the longterm stuaton for a person. However, t appears mpossble to decde whch factors, and ther relatve prorty, are of mportance for ather ndvdual's evaluaton of hs lfe. Thus, rather than applyng a ratng scale constructed for use by physcans," we wanted to kw how a patent, wth hs/her own operatonal defntons, perceved the global qualty of lfe before and after stroke. The questonnare therefore ended wth a summng-up graph n the form of two bars graded wth "worst possble" at the bottom and "best possble" at the top (fg. 1). The patent was asked to mark on the left bar hs/her qualty of lfe before the stroke and on the rght bar hs/her present one. He had access to earler graphs when reexamned. The dfference n heght before and after stroke was calculated. Ths technque bulds upon the vsual analogue scale suggested by Husksson. 12 Our modfcaton conssted of a measure of change rather than statc condtons. The understandng of the analogue scales was tested n the followng way: Changes n qualty of lfe marked on the bars were valdated aganst ntervew answers (three questons about the total lfe stuaton wth 5-

2 DISABLEMENT AND QUALITY OF LIFE/Ahlso et al 887 B*t poalbla Worst possble. Change n qualty of llf* after stroke FIGURE 1. Qualty of lfe graphs. After each ntervew the patent marked on the left bar hs/her qualty of lfe before stroke and on the rght hs/her present one. grade answers). Increasng degree of change as expressed verbally was thus found to correspond to ncreasng change of qualty of lfe calculated from the graphs (from a mnmum of 1,8 to a maxmum of -44,8). Statstcs For testng dfferences of proportons, the chsquare test wth Yates' correcton was appled. For testng dfferences of means a two-taled t-test was used for ndependent measures and a pared t-test for correlated. Results Socal Condtons At the tme of stroke 46 of the patents were marred, 16 sngle or dvorced and 34 wdowers/wdows. Altogether 52 were lvng wth other persons and 44 alone. Ffteen per cent belonged to the hghest soco-ecomc group, 42% were mddle class and 43% workers. Twenty persons were workng outsde home. The remanng patents were housewves or had old age pensons. At dscharge from the Stroke Unt, 55 of the patents could go back to ther own homes, whereas 41 were transferred to geratrc hosptals for further rehabltaton or care (fg. 2). Some of the latter could later Home QorlatrHc hosptal TIME AFTER BTROKE move home. Others, mostly due to new strokes or accdents, had to move n the other drecton. At the end of the study (%) of the patents were deceased, 54 (56%) were lvng at home and the remanng 16 (17%) were n geratrc hosptals. On most nstances, ADL capacty was decsve for a patent's opportunty to lve at home. Those who needed constant care by others for the basc ADL usually had to be treated n a geratrc hosptal. Only sx such patents could eventually be transferred home. They were all male and had an able wfe who had accepted the nursng task, sometmes supported by a day care center. Eleven patents were at some tme durng follow-up treated n a geratrc clnc although they belonged to the best ADL group. Eght needed care due to severe aphasa ordsorentaton, qualtes t evaluated n Katz ndex unless nfluencng ADL. Fve patents had gradually mproved and were just about to leave hosptal at the tme of nvestgaton. New Strokes and Mortalty Durng the study perod 22 patents (23%) suffered new strokes. Twenty-sx patents ded (%). Causes of death were: complcaton to the ntal stroke (5 patents); new stroke (10); schemc heart dsease (5); aortc aneurysm, gangrene (3); neoplasm, urema (3). ADL Capacty For the whole group the ADL capacty mproved gradually wth tme after stroke. At the acute stage 55% were n group A compared to 76% of the survvors at the end of the study. The patents who ded had been more dsabled ntally than those who survved for two years. Part of the total mprovement, therefore, was due to the death of the worst struck. As can be seen from table 1, however, ather part was due to a favorable change of ADL n many cases, especally durng the frst 6 months after stroke. At 19 follow-up nvestgatons a deteroraton of ADL was ted (table 1). Two patents n a bad condton, wth gradual worsenng, accounted for fve of these deteroratons. The remanng 14 occurred n as many patents: 7 had a new stroke; 2 broke a leg; 2 were njured n accdents; 2 had a leg amputated. Movements between ndependent and dependent ADL generally resulted n transfers between home and ger- TABLE 1 Changes of ADL Croup durng Three Perods after Stroke and ly, from the Acute Stage to the End of the Study Perod after stroke ly, 1 week- 1 month- 6 months- 1 week- 1 month 6 months 2 years 2 years ADL capacty No. of patents FIGURE 2. Flow chart as regards lvng condtons and mortalty durng two year follow-up of patents dscharged alve from a stroke unt. Constant Improved Deterorated

3 888 STROKE VOL 15, No 5, SEPTEMBER-OCTOBER 1984 TABLE 2 Outcome Two Years after Stroke as regards ADL Capacty and Mortalty n Relaton to Patent Age and Intal Severty of Dsablement Intal age and ADL capacty No. of patents Independent Outcome at 2 years. % Dependent < 71 years 2: 71 years Independent Dependent < 71 + Independent < 71 + Dependent ^ 71 + Independent 2: 71 + Dependent \ < ^ ""> < \ 50\ 69/ < X II ^ < 001 >< / 59 V < o.oo Statstcally sgnfcant dfferences are ted. Independent = ADL group A; Dependent = ADL group atrc hosptals. Such ADL changes therefore concded wth those of lvng condtons shown n fgure 2. At the acute stage older patents had a n-sgnfcant tendency to be somewhat worse wth regard to ADL. For the outcome at two years both age and ntal ADL were of statstcally sgnfcant mportance (table 2). Thus younger patents wth ndependent ADL had the best progss and older, dependent the worst regardng mortalty as well as ndependent functon (p < 0.001). Ths does t mean that a great number of dsabled patents remaned n a bad condton for two years. In fact, ths happened n only seven of ntally 43 cases. The remander ether mproved to ndependence or ded. Qualty of Lfe At each examnaton 20-24% of the patents could t be meanngfully ntervewed r asked about ther qualty of lfe (table 3). Seventy per cent of them were severely dsabled compared to 23% of those questoned. Among patents ndependent n ADL solated severe aphasa or dementa were reasons for npartcpaton. As can be seen from table 3, most patents reported a TABLE 3 Qualty of Lfe after Stroke as Compared to Before, accordng to Scale Marks at the Dfferent Intervews Tme after stroke 1 week 1 month 6 months 2 years Qualty of lfe No. of patents Constant Improved Deterorated Mean change n qualty of lfe Alve, t ntervewed 1 ''I ''I 'l J l73 3l J 53J 51J 41J (21%) 19(20%) 18(20%) 17(24%) 2 5 decrease of qualty of lfe after stroke. The decrease remaned rather constant durng the follow-up perod. Ths was confrmed when only the 50 patents ntervewed on all four occasons were consdered. Ther estmaton of qualty of lfe before stroke dd t vary statstcally sgnfcantly between the nvestgatons r dd the reported deteroraton, although ther physcal functon mproved. Less than one thrd of the subjects reported unchanged or mproved qualty of lfe after the stroke. Most of them were t at all dsabled. Of the 12 mprovements ted, seven were slght. In the remanng fve patents specfed reasons for a postve change were gven, such as: "Felt happer, havng been able to slow down", "apprecated lfe more after the llness". The mportance of age, sex and socal factors was studed. For patents on the same level of ADL ratng there were statstcally sgnfcant dfferences between the means of qualty of lfe changes for men and women, r for patents below or above 71 years of age. The socoecomc group made dfference and those who had expressed complants about the socal stuaton dd t evaluate ther qualty of lfe lower than the remander. There was, however, a correlaton between changes n qualty of lfe and ADL capacty (fg. 3). Thus, as a mean, qualty of lfe deterorated progressvely wth ncreasng degree of dsablement. In fgure 3 the results from all four follow-ups are presented together. When dagrams for each nvestgaton were plotted separately, the results were smlar. At two years, for nstance, the dfferences were statstcally sgnfcant between the two A groups and between A and the two worst groups. Although ADL capacty thus seems to be of mportance for qualty of lfe, t must be ponted out that there was great varaton and much overlap. Qualty of lfe faled to mprove wth tme as ADL dd. Most patents wthout any recorded dsablty reported a decrease. Among these subjects (A plus = Independent ADL and dsorentaton, dysphasa or walkng ads)

4 DISABLEMENT AND QUALITY OF UFEJAhlso et al SO I -«- \*. r": -70- T 1 I 1 Apha n-t51 SO-23 : t! AmJnu* n-81 SO- B-D SO-31 -»± r «SO-24 FIGURE 3. Relaton between ADL capacty and changes n qualr\ : of lfe after stroke. Results from all four follow-up nvestgatons are presented together. Mean \>alues of deteroraton for each ADL group are gven n the fgure. A plus = Independent ADL, dsonentaton, dysphasa or walkng ads; A mnus = Independent ADL but dsorentaton, dxsphasa or walkng ads; B-D = Dependent ADL; 'SLE = Heavly dependent ADL. the followng reasons were spontaneously gven durng the ntervews: Physcal Imparment Fne motor functon (10 patents); Walkng ablty (5); Outdoor lesure/travels (7); Balance/Vertgo (10); Condton (4); Tredness (21). Psychologcal Dffcultes Worres about a new stroke (16); Depresson (12); Concentraton (8); Memory (6). Medcal Effects Therapy (e.g. antcoagulants) lmts freedom (3); Investgatons/Operatons (8). Thus qualty of lfe as marked on the scales seemed to be nfluenced by physcal as well as psychologcal factors. Further, to study the last mentoned, answers to structured ntervew questons were compared wth the change n qualty of lfe marked on the bars at the nvestgaton two years after the stroke. Fve questons regardng anxety and fve regardng depressve reactons were selected. For each queston there were fve alternatve answers graded from 1 = absent to 5 = prounced. As can be seen from table 4, t had a great mpact on change n qualty of lfe f the patent felt anxous or depressed. These psychologcal reactons seemed as mportant as physcal dsablement for the evaluaton of qualty of lfe. To ensure that ADL dfferences between groups dd t explan the mpact of emotonal factors, patents ndependent n ADL were studed separately. The observatons regardng depresson and anxety were thereby confrmed. Furthermore, from a predctve standpont, those patents who were ether "depressed" or "anxous" durng the acute phase showed more deteroraton of qualty of lfe after 24 months than other patents (- 34,8 versus - 19,2, p < 0.05). Dscusson Mortalty and stroke recurrence rates n the present patents were comparable to those of other stroke studes. 12 The progss for lfe as well as functonal capacty was dependent on age and severty of dsablement n the acute phase. However, even among the older and worst affected only few remaned n a bad condton for two years. An equally small group of patents mproved to ndependence and the majorty ded. When compared wth data from stroke rehabltaton studes, recently summarzed, 3 the followng smlartes and dscrepances emerged. Our patents were somewhat older but more often ndependent at outset. Ths s due to the fact that n the other studes dsabled patents sutable for tranng programs had been selected, whereas our materal also conssted of patents beyond such ams and of cases wth mld symptoms or TIA. The ratonale for ncludng TIA patents was that they, lke the others, had been hosptalzed for threatenng dsease symptoms, after whch fear for future recurrences mght develop. The queston was how ther qualty of lfe was affected compared to that of patents who were dsabled as well. The boundary between the two groups was found artfcal. Cerebral nfarcton and lastng metabolc dsturbances have been revealed after TIA. 13 Some patents wth manfest stroke recovered slghtly later than those wth TIA or had very mld resdues. Occasonally such resdues were also ted after what had been named TIA. New dseases, accdents and death occurred durng followup n both groups. For these reasons we have t treated TIA separately. Despte dssmlartes of materals there was a common experence n all the studes. Unless a new stroke TABLE 4 Means of Changes n Qualty of Lfe for Patents wth and wthout Anxety or Depresson two years after Stroke. Anxety, yes Depresson, yes Anxety or depresson, yes ADL Worse than A plus A plus No Change n qualty of lfe, mean Dfference betw. yes and Sgnfcance of dff. p < 0.01 p < 0,001 p < 0,001 p < 0,01 For comparson the mean s also gven for the very best ADL group (A plus) and those worse. Anxety, yes = At least one 5-pont answer (prounced) to fve anxety questons. Depresson, yes = At least one 5-pont answer (prounced) to fve anxety questons.

5 890 STROKE VOL 15, No 5, SEPTEMBER-OCTOBER 1984 or other accdents occurred, dsabled patents mproved gradually wth tme, most prouncedly durng the frst sx months. Our fndngs regardng age and ntal functon as progstcally mportant factors for recovery support those of Marquardsen and WHO In rehabltaton studes ths s more questonable. 3 One possble reason for the dscrepancy s that age and functon are already nvolved n ther selecton of patents. Furthermore, a weakness of ths, and the rehabltaton studes, s the relatvely small sample sze. Partcularly ths regards subgroups. Therefore, negatve fndngs must be nterpreted wth due cauton. As clamed by ts desgner, Katz' score used for ADL measurements turned out to be a good nstrument for assessng the degree of care needed by a patent. 8 However, ndependent ADL does t mean absence of physcal dsablement, whch many complants durng the ntervews stressed. Addng nformaton about dysphasa, dsorentaton and need of walkng ads substantally mproved the estmaton of a patent's stuaton. Even so, the measures must be consdered crude. Vertgo, tredness, memory and cogntve dffcultes, mparment of fne motor functon and walkng, often lmted opportuntes for lesure and ntellectual or socal functons. Thus, physcal factors mght be of mportance for qualty of lfe also n ADL ndependent patents. However, qualty of lfe was t nfluenced by these factors alone. Sgns of depresson, and also of anxety, were of smlar mportance. Ths seems hghly plausble and s supported by recent reports showng depresson to be a common and serous problem n the post-stroke perod. 15 Somewhat surprsng was the observaton that perceved qualty of lfe dd t mprove durng follow-up, although ADL functon dd. Aganst ths background there s too great a dscrepancy between efforts nvested n physcal rehabltaton and n psychologcal support. The care of stroke patents calls for trals n answerng questons lke: Would ndvdual or group psychotherapy be benefcal? Should ths be arranged prophylactcally as an ntegrated part of post-stroke care? Is there a role for antdepressve drugs as ndcated? 16 If so, for whom, when, and for how long? Under all crcumstances more emphass needs to be placed on the mportance of psychologcal reactons for a patent's qualty of lfe after stroke. An easy way to evaluate ths n routne clncal practce s therefore needed. We found the graphs very useful n ths context. They were as well understood by the patents as verbal questons on the matter. The fact that the levels marked on the graphs correlated both to degree of dsablement and to emotonal status supports the hypothess that the method was reasonable and reflected what most people would put nto the concept' 'qualty of lfe". We therefore suggest the use of the two vsual analogue scales a a short-cut for detectng when a patent's lfe stuaton s serously affected. Ths can serve as a bass for further dscussons about the underlyng causes and what rehabltatve measures may be approprate. Ackwledgments Ths work was supported by grants from the Foundatons of Clas Groschnsky, Loo and Hans Osterman, Fredrk and Ingrd Thunng, the Serafmer Hosptal and the Swedsh Natonal Assocaton aganst Heart and Chest Dseases References 1. Marquardsen J. The natural hstory of acute cerebrovascular dsease. A retrospectve study of 769 patents. Copenhagen; Munksgaard, Sacco RL, Wolf PA, Kannel WB, McNamara PM: Survval and recurrence followng stroke. The Framngham study Stroke 13: , Lnd K: A synthess of studes on stroke rehabltaton. J Chron Ds 35: , von Arbn M, Bntton M, de Fare U, Helmers C, Mah K, Murray V: A study of stroke patents treated n a n-ntensve stroke unt or n general medcal wards. Acta Med Scand 208: 81-85, Ter nt A: A prospectve epdemologcal survey of cerebrovascular dsease n a Swedsh communty. Uppsala J Med Sc 84: , Wolf PA, Dawber TR, Thomas HE et al: Epdemology of stroke. Adv Neural 16: 5-19, von Arbn M, Bntton M, de Fare U et al: A stroke unt n a medcal department. Organzaton and the frst 100 patents. Acta Med Scand 205: , Katz S, Akpom CA: A measure of prmary socobologcal functons. Int J of Health Servces 6: , Hornqust JO: The concept of qualty of lfe. Scand J Soc Med 10: 57-61, van Dam FSAM, Somers R, van Beek-Couzjn AL: Qualty of lfe: Some theoretcal ssues. J Cln Pharmacol 21: 166S-I68S, Sptzer WO, Dobson AJ, Hall J et al: Measurng the qualty of lfe of cancer patents. A concse ql-ndex for use by physcans. J Chron Ds 34: , Husksson EC: Measurement of pan Lancet l: , Vorstrup S, Hemmngsen R, Henrksen L et al: Regonal cerebral blood flow n patents wth transent schemc attacks studed by Xen-133 nhalaton and emsson tomography. Stroke 14: , Aho K, Harmsen P, Hata S, Marquardsen J, Smmov VE, Strasser T: Cerebrovascular dsease n the communty: results of a WHO collaboratve study. Bull WHO 58: , Robnson RG, Prce TR: Post-stroke depressve dsorders: A follow-up study of 103 patents. Stroke 13: , Lpsey JR, Robnson RG, Pearlson GD, Rao K, Prce TR: Nortnptylne treatment of post-stroke depresson: a double-blnd study. Lancet : , 1984