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Article details
Groeneveld I.F., Goossens P.H., Braak I. van, Pas S.L. van der, Meesters J.J.L., Rambaran Mishre R.D., Arwert H.J. & Vliet Vlieland T.P.M. (2018), Patients' outcome expectations and their fulfilment in multidisciplinary stroke rehabilitation, Annals of Physical and Rehabilitation Medicine 62(1): 21-27.
Doi: 10.1016/j.rehab.2018.05.1321
Original article
Patients’ outcome expectations and their fulfilment in multidisciplinary stroke rehabilitation
Iris F. Groeneveld
a,b,c,*, Paulien H. Goossens
a,c, Inke van Braak
a, Ste´phanie van der Pas
d,e, Jorit J.L. Meesters
b,c, Radha D. Rambaran Mishre
b,f, Henk J. Arwert
b,g,
Thea P.M. Vliet Vlieland
a,b,c, SCORE-study group
aRijnlandsRehabilitationCentre,Wassenaarseweg501,2333ALLeiden,TheNetherlands
bSophiaRehabilitation,Vrederustlaan180,2543SWTheHague,TheNetherlands
cDepartmentofOrthopaedics,Rehabilitation,andPhysicalTherapy,LeidenUniversityMedicalCenter,Albinusdreef2,2333ZALeiden,TheNetherlands
dMedicalStatistics,DepartmentofBiomedicalDataSciences,LeidenUniversityMedicalCenter,Leiden,Albinusdreef2,2333ZALeiden,TheNetherlands
eMathematicalInstitute,LeidenUniversity,NielsBohrweg1,2333CALeiden,TheNetherlands
fDepartmentofRehabilitationMedicine,ReinierdeGraafHospital,ReinierdeGraafweg5,2625ADDelft,TheNetherlands
gDepartmentofRehabilitationMedicine,HaaglandenMedicalCentre,Lijnbaan32,2512VADenHaag,TheNetherlands
ARTICLE INFO
Articlehistory:
Received20January2018 Accepted4May2018
Keywords:
Stroke Rehabilitation Expectations
‘‘Health-relatedqualityoflife’’
‘‘Strokerehabilitation’’
ABSTRACT
Background:Patients’expectationsoftheoutcomesofrehabilitationmayinfluencetheoutcomesand satisfactionwithtreatment.
Objectives:Forstrokepatientsinmultidisciplinaryrehabilitation,weaimedtoexplorepatients’outcome expectationsandtheirfulfilmentaswellasdeterminants.
Methods:TheStrokeCohortOutcomesofREhabilitation(SCORE)studyincludedconsecutivestroke patientsadmittedtoaninpatientrehabilitationfacilityafterhospitalisation.Outcomeexpectationswere assessedatthestartofrehabilitation(admission)byusingthethree-itemExpectancyscale(sumscore range3–27)oftheCredibility/ExpectancyQuestionnaire(CEQ).Afterrehabilitation,patientsanswered thesamequestionsformulatedinthepasttensetoassessfulfilmentofexpectations.Baselinepatient characteristicswererecordedandhealth-relatedqualityoflife(EQ-5D)wasmeasuredatbaselineand afterrehabilitation.Thenumberofpatientswithexpectationsunfulfilledorfulfilledorexceededwas computedbysubtractingtheadmissionanddischargeCEQExpectancyscores.Multivariableregression analysiswasusedtodeterminethefactorsassociatedwithoutcomeexpectationsandtheirfulfilment, estimatingoddsratios(ORs)and95%confidenceintervals(CIs).
Results:Weincluded165patients(96males[58.2%],mean(SD)age60.2years[12.7])whocompletedthe CEQExpectancyinstrumentatadmission(medianscore21.6,interquartilerange[IQR]17.0–24.0);
79completeditbothatadmission(medianscore20.6,IQR16.6–24.4)andfollow-up(medianscore20.0, IQR16.4–22.8).For40(50.6%)patients,expectationsoftherapywerefulfilledorexceeded.Nopatient characteristicatadmissionwasassociatedwithbaselineCEQExpectancyscore.Oddsofexpectation fulfilmentwereassociatedwithlowexpectationsatadmission(OR0.70,95%CI0.60–0.83)andimproved EQ-5Dscore(OR1.35,95%CI1.04–0.75).
Conclusions:Inhalfofthestrokepatientsinmultidisciplinaryrehabilitation,expectationswerefulfilled orexceeded,mostlikelyinpatientswithlowexpectationsatadmissionandwithimprovedhealth- relatedqualityoflife.Moreresearchintotheroleofhealthprofessionalsregardingthemeasurement, shapingandmanagementofoutcomeexpectationsisneeded.
C 2018ElsevierMassonSAS.Allrightsreserved.
* Correspondingauthor.RijnlandsRehabilitationCentre,Wassenaarseweg501,2333ALLeiden,TheNetherlands.
E-mailaddress:igroeneveld@zinl.nl(I.F.Groeneveld).
Availableonlineat
ScienceDirect
www.sciencedirect.com
https://doi.org/10.1016/j.rehab.2018.05.1321
1877-0657/ C 2018ElsevierMassonSAS.Allrightsreserved.
1. Introduction
Worldwide, strokeis oneof theleading causesofdisability, often requiring long-term care and rehabilitation [1]. In The Netherlands,approximately8%ofallstrokepatients(n=3200)are admitted to an inpatient rehabilitation facility (IRF) each year [2].Ingeneral,thesearerelativelyyoungerpatientswithcomplex andmultipleimpairmentsandgoodrecoverypotential[3].They areofferedanextensivemultidisciplinaryrehabilitationprogram, rangingfrom5 to20hrof therapy perweek. Health outcomes improve,but residualimpairments, limitations,and restrictions oftenpersist.
Every stroke patient has certain expectations regarding the outcomeoftherehabilitationtreatment.‘‘Outcomeexpectations’’
refer to ‘‘improvements that clients believe will be achieved’’
[4,5].Theconceptofoutcomeexpectationsisofinterestbecauseit may be a modifiable predictor of outcome and therefore an additionaltargetoftreatment[6].Varioussystematicreviewsof studiesofpatientsundergoingtotalkneeandhiparthroplasty,[7]
interventionsforchroniclowbackpain,[8]andpsychotherapy[9]
showedevidenceofanassociationbetweenhighexpectationsand better outcomes in terms of pain, stiffness, functioning, [7]
activities,workresumption,[8]andpsychologicalfunctioning[9].
Among stroke patients, only a few small-scale quantitative studies(n<50)on outcomeexpectationsofrehabilitationhave beenconducted.Themean(SD)expectancyscoreregardingmotor improvement after a high-repetition upper-extremity training programwas7(2)ona0–10scale[10].Amean(SD)expectancy scoreof20(5)wasfoundfortheeffectivenessofrobot-assistedgait trainingafterstroke[11]usingthethree-itemExpectancyscaleof theCredibility/ExpectancyQuestionnaire(CEQ;totalscoreranging from3 to27) [5]. In a qualitative study of 16 stroke patients startingoutpatientrehabilitation,severalpatientsexpectedthat physiotherapycombinedwithwillpoweranddeterminationcould leadtoimprovementsforyearsafterstrokeandwouldeventually resultin(near)fullrecovery[12].
The relation between outcome expectations and actual rehabilitation outcomes after stroke is poorly investigated.
Existingresearchsuggeststhatstrokepatientswithhighoutcome expectationsoverestimatetheirfunctionallevelatdischargeafter inpatient rehabilitation [13] and may be disappointed after therapybecausetheydidnotreachfullrecovery[14].
Factors affect outcome expectations of stroke rehabilitation were investigated only qualitatively, and included ‘‘limited knowledgeonlikelyrecovery,physiotherapists’encouragements, andactualimprovementsmadeinthefirstweeks’’[12].Sociode- mographic and clinicalcharacteristics associated withoutcome expectationshavenotbeeninvestigatedinstroke,unlikeinother diseases.Factorspredictingthefulfilmentofexpectationshavenot beenidentified.
A comprehensive study of stroke patients on the outcome expectationsregardingmultidisciplinaryrehabilitationislacking.
Suchastudywillrevealmoreinsightintotheneedforandthe target group of expectation management. Both the patients’
outcomeexpectationsandthepotentialeffectsofrehabilitation treatmentarediscussedbythehealthprofessionalandpatientat the start of rehabilitation to facilitate the formulation of individualandachievablegoals. Therefore,theprimarygoalof this study was to assess the outcome expectations of stroke patientsatthestartof rehabilitationandtheir fulfilmentafter finishingrehabilitation.Thesecondarygoal wastoexplorethe determinantsofoutcomeexpectationsanddeterminantsofthe fulfilment. Becausethepsychometric properties of theCEQ in stroke are unknown, its internal consistency and convergent validitywereexploredaswell.
2. Methods
2.1. Designandsetting
ThisstudyispartoftheStrokeCohortOutcomesofREhabilita- tion(SCORE)study,anongoingprospectivecohortstudystartingin March 2014 in two Dutch rehabilitation facilities (Dutch Trial Register no. 4293) [15]. For the present study on outcome expectations, data were used for patients who had completed rehabilitationbyJune2016.Thestudyprotocolwasapprovedby theethicsboardofLeidenUniversityMedicalCenter(LUMC)and allparticipatingpatientsgavewritteninformedconsent.Allstudy procedures were executed in accordance with the Helsinki Declaration[16].
2.2. Studypopulationandrecruitment
Thisstudyincludedconsecutivestrokepatientswhohadbeen referred for inpatient rehabilitation by the neurologist and/or rehabilitationphysician,were18yearsoldandhadanischaemic orhaemorrhagic(includingsubarachnoidalhaemorrhage)stroke lessthan6monthsago.Patientswitha pre-existingpsychiatric disorderordementiawereexcluded,aswerepatientsunableto provide written informedconsent or complete Dutch-language questionnaires becauseofsevereaphasiaor a languagebarrier.
Within thefirst week afteradmission, participants received an informationletterfromthetreatingrehabilitationspecialist,thena researchassistantvisitedthepatientforfurtherexplanation.All patientswhoagreedtoparticipateandprovidedinformedconsent wereincluded.
2.3. Assessments
Atthestartofrehabilitation,sociodemographiccharacteristics, clinicalcharacteristics,andhealth-relatedqualityoflife(HRQoL) wereassessedinadditiontooutcomeexpectationsbymeansof medicalfilesandbaselinequestionnairesthatwereadministered bytheresearchassistant.Thehealthprofessionalswereunaware ofthepatients’scoresontheCEQ.Rehabilitation-relatedcharac- teristicswerederivedfrommedicalfilesaftertreatment.Within 2weeksaftertheendoftherehabilitationtrajectory,expectation fulfilment and HRQoL weredetermined. The delay of 2 weeks providedthepatienttimetoconsiderandreflectontheoutcomes oftreatment.Follow-upquestionnairesweresentbypostoremail bypatientpreference.
2.3.1. Outcomeexpectationsandfulfilmentofexpectations
OutcomeexpectationswereassessedatbaselinebytheCEQ, which includesan Expectancyscale (3 items) anda Credibility scale(3items).Forthecurrentstudy,onlytheExpectancyscale was used because we were specifically interested in outcome expectations and their fulfilment. Items 1 and 3 of the CEQ Expectancyscalehavea0–100%scale,anditem2hasa1–9rating scale.Aftertransformingthepercentagescales,thetotalsumscore ranged from3 to27. The CEQ is not disease-specific and was translatedintoDutchforuseinpatientswithchronicbackpain [17].Amongpatientswithpost-traumaticstressandgeneralized anxietydisorders,standardized
a
coefficientsof0.90and0.79were found,andthetest–retestreliability(r)was0.82[5].ExpectationfulfilmentwasassessedbytheCEQ Expectancy- Followupsurvey.Thisversioncomprisedthesame3itemsofthe Expectancy scale, phrased in the past tense, in line with the methodologyusedbyHaanstraetal.[18].Thesequestionswere applied after rehabilitation, without patients knowing their baselinescores.
I.F.Groeneveldetal./AnnalsofPhysicalandRehabilitationMedicine62(2019)21–27 22
2.3.2. Sociodemographic,clinical,andrehabilitation-related characteristics
Sex, date of birth, date of stroke, stroke type, and stroke localizationwerederivedfrompatients’medicalfiles.Thelevelof independenceinactivitiesofdailylivingwasassessedbythenurse atbaselinebyuseofthe10-itemBarthelIndex[19]withatotal scorerangingfrom0(worst)to20(best).Thepresenceofaphasia (yes/no)wasdeterminedbythespeech therapist byuseof the Token test (score<7, no aphasia; score7, light to severe aphasia)[20],andthelevelofself-reportedcognitivefunctioning was assessed by the 7-item cognition (memory and thinking) domainof the Stroke Impact Scale (total scorefrom 0 to100) [21].Thelevelofeducationwasassessedbya6-pointscaleand splitinto3 categories(low,medium,high).Comorbiditieswere determinedbytheDutchstudy on LifeSituationQuestionnaire (PermanentOnderzoeknaardeLeefsituatie),comprising16chron- ic diseases, including, for example, diabetes, hypertension, arthrosis,andpsoriasis[22].Thelengthofstayandwhetherthe patientcontinuedrehabilitationasanoutpatientafterdischarge werederived frommedical files. Thetime between strokeand baseline questionnaire completion and between the start of rehabilitationandquestionnairecompletionwerecomputed.
2.3.3. HRQoLonadmissionandattheendofrehabilitation Asapossiblepredictorofoutcomeexpectations,theHRQoLwas assessedatbaseline,andasapossiblepredictorofthefulfilmentof expectations,changein HRQoL was assessed.Because patients’
expectations concerned the effect of rehabilitation on their limitations in general instead of in specific health domains, generalHRQoLwasassessedbytheEuroqol-5D(EQ-5D).TheEQ- 5Dprovidesasinglehealthindexbasedonself-reportedmobility, self-care,usualactivities,pain/discomfort,andanxiety/depression [23].TheEQ-5Dwasfoundvalidandreliableinseverallanguages [24].
2.4. Statisticalanalyses
Data analyses involved use of IBM SPSS v22.0. Patient characteristics, CEQ Expectancy scores, and EQ-5D scores are presentedasmean(SD),median(interquartilerange[IQR]),and number(%),asappropriate.Thedataarepresentedforthetotal population as well as the subgroup that completed both the baseline and follow-up questionnaire. Differences between re- spondersandnon-responderstothefollow-upquestionnairewere assessed by unpaired t-tests, Mann–Whitney U-tests and Chi2 tests,accordingtothetypeanddistributionofthedata.
Toaddresstheprimaryresearchobjectives,firstthemean(SD) andmedian(IQR;min–max)valuesfortheCEQExpectancyandthe CEQExpectancy-Followupscoreswerecalculated,peritemandin total. The median CEQ Expectancy-Follow up scores were comparedwiththemedianCEQ ExpectancyscoresbyWilcoxon signedranktests.Second,3‘‘outcomefulfilmentcategories’’were constructed:patientswithanExpectancy-Followupscorelower thantheirExpectancyscore 1wereclassifiedas‘‘expectations unfulfilled’’;patientswithanExpectancy-Followupscoreequalto their Expectancy score1 were classified as ‘‘expectations ful- filled’’;andpatientswithanExpectancy-Followupscorehigherthan theirExpectancyscore+1wereclassifiedas‘‘expectationsexceeded’’.
To address the secondary objectives, first univariate linear regressionanalysiswasusedtoidentifytheassociationsbetween baselineoutcomesexpectationsandseveralindependentbaseline variablesexpectedtoberelatedinpopulationswithotherdiseases basedontheliterature(i.e.,sex,age,timesincestroke,indepen- denceinactivitiesofdailyliving[Barthelindex],aphasia[yes/no], levelofcognitivefunctioning[SIS],numberofcomorbidities,and HRQoL[EQ-5D]).Additionally,theassociationsbetweenoutcome
expectations and rehabilitation facility, level of education, and time between the start ofrehabilitation and completionof the baseline questionnaire were assessed. All variables related to baselineoutcomesexpectations(P<0.15)wereenteredsimulta- neouslyinamultivariablelinearregressionmodelwithoutcome expectations as the dependent variable. Beta values and 95%
confidence intervals (CIs) were calculated. Second, regarding expectation fulfilment, thecharacteristics of participantsin all 3outcomecategoriesweredescribed.Thecategories‘‘expectations fulfilled’’ and ‘‘expectationsexceeded’’werecombined intoone category:‘‘fulfillingorexceedingexpectations’’. Theoddsratios (ORs)fortheassociationbetweeneachindependentvariableand
‘‘expectations exceeded’’ was assessed in univariate logistic regression analyses. Because the independent variable ‘‘change inHRQoL’’concernsascalefrom0.0to1.0,wemultiplieditby10to enhance the interpretability of the OR. Finally, all variables significantly associated on univariate analyses (P<0.15) were tested for an association on multivariable logistic regression analyses.P<0.05wasconsideredstatisticallysignificant.
The internal consistency of the CEQ was calculated by the Cronbach’s alpha. An indication of convergent validity was obtainedbyexaminingtheassociationbetweenoutcomeexpec- tationsandBarthelIndex,aphasia,andtimebetweenrehabilita- tionstartandquestionnairecompletion.
3. Results
3.1. Studypopulation
Intotal,527patientswereeligibleforparticipation,443were invited,273providedinformedconsent,and165completedthe Expectancy scaleof theCEQ atadmission (Fig.1). Of those,79 (47.9%)participantsalsocompletedtheCEQExpectancy instru- ment at follow-up. Overall,96 (58.2%)patients weremale, the mean(SD)agewas60.2(12.7)years,127(77.0%)hadanischemic stroke,and65(39.9%)hadahigheducation(Table1).Thepatients whocompleted(n=79)anddidnotcomplete(n=86)thefollow- up questionnairedid not differin sociodemographic or clinical variables, except for a shorter length of centre stay (median 38.0days,IQR28.5–61.0vs.50.0days,IQR32.0–68.5,P=0.02).
3.2. Outcomeexpectationsandfulfilmentofoutcomeexpectations
ThedistributionofthetotalCEQExpectancyscoresatbaseline is in Fig. 2, and Table 2 shows data for theitems of theCEQ Expectancy scale at baseline and follow-up. The median CEQ Expectancyscoreatadmission(n=165)was21.6(IQR17.0–24.0).
The median CEQ Expectancy scorefor patients whocompleted bothquestionnaires(n=79)was20.6(IQR16.6–24.4;range5.6–
27.0)andthemedianCEQExpectancy-Followupscorewas20.0 (IQR16.4–22.8;range3.0–25.4).Itemandtotalscoresdidnotdiffer betweentheCEQExpectancyscaleandCEQExpectancy-Followup scale.Accordingtoourdefinitions,expectationswereunfulfilledin 39 patients (49.4%),fulfilled in13 (16.5%), and exceeded in27 (34.2%)patients.
3.3. Determinantsofoutcomeexpectations
Onunivariateanalyses, highoutcomeexpectations(P<0.15) wereassociatedwithhigheducation(
b
=0.80,95%CI 0.05;1.64), shorttimebetweenthestartofrehabilitationandquestionnaire completion(b
= 0.06,95%CI 0.12;0.004),andbeingtreatedina rehabilitationfacility2(b
=1.25,95%CI 0.22;2.72).Thepresence ofaphasiaandlevelofcognitiveimpairmentwerenotsignificantly associated with outcome expectations. On multivariableFig.1.Flowofpatientsinthestudy.
Table1
Sociodemographic,clinical,andrehabilitation-relatedcharacteristicsofstrokepatientsundergoingrehabilitationintheSCOREstudy.
Completedbaselineassessment n=165
Completedbaselineandfollow-upassessment n=79
Sociodemographiccharacteristics
Sex(male;%) 96(58.2) 47(59.5)
Age(mean,SD) 60.2(12.7) 62.0(10.9)
Ethnicity,nativeDutch(n,%) 126(78.3) 64(83.1)
Education,high(n,%) 65(39.9) 29(37.2)
Clinicalcharacteristics
Stroketype,ischemic(n,%) 127(77.0) 63(79.7)
Strokelocalization(n,%)
Left 79(47.9) 39(49.4)
Right 74(44.8) 35(44.3)
Stem 5(3.0) 2(2.5)
Posterior 5(3.0) 3(3.8)
Multiplesites 2(1.2) 0(0.0)
BarthelIndex(median[IQR,min–max]) 16.0(11.0–19.0;1–20) 17.0(11.5–20.0;1–20)
Aphasia(n,%) 37(23.6) 17(22.4)
StrokeImpactScale,cognition(median[IQR,min-max]) 85.7(71.4–100;21.4–100) 89.3(74.1–100;25.0–100)
Comorbidities2(n,%) 108(78.8) 52(78.8)
Comorbidities(median[IQR,min–max]) 2.0(1.0–2.5;0–7) 1.5(1.0–2.3;0–7)
EQ-5Dtotalscore(mean,SD) 0.69(0.24) 0.71(0.23)
ChangeinEQ-5Dbetweenstartandendofrehabilitation(mean,SD) 0.09(0.20) 0.09(0.12) Rehabilitation-relatedcharacteristics
Inpatientrehabilitationfacility,n=1(n,%) 100(60.6) 51(64.6)
Timebetweenstrokeandquestionnairecompletion(days)(mean,SD) 29.0(22.0–41.0) 28.0(20.0–35.0) Timebetweenstartofrehabilitationandquestionnairecompletion
(days)(median,IQR)
17.0(10.0–24.5) 16.0(9.0–23.0)
Lengthofstay(days)(median,IQR) 43.5(30–67) 38.0(28.5–61.0)*
Continuationasanoutpatient,Yes(n,%) 106(64.2) 48(60.8)
IQR:interquartilerange;EQ-5D:Euroqol-5D.
*P<0.05forresponders(n=79)vs.non-responders(n=86)atbaseline.
I.F.Groeneveldetal./AnnalsofPhysicalandRehabilitationMedicine62(2019)21–27 24
regression analysis,none of theseassociations was statistically significant,withtheoverallexplainedvarianceofthemodel(R2) beinglow(0.064).
3.4. Determinantsofthefulfilmentofoutcomeexpectations
Table 3 presentsthe characteristicsof the population in all 3expectation-fulfilmentcategories.Onunadjustedanalysis,high outcomeexpectationsatbaselinewereassociatedwithlowoddsof
expectationfulfilment(OR=0.73,95%CI0.63–0.84),whereasodds ofexpectationfulfilmentwereassociatedwithimprovedHRQoL (OR=1.35, 95% CI 1.05–1.75). In the adjusted analysis, these associations were still statistically significant (OR 0.70, 95% CI 0.60–0.83and1.35,1.04–1.75,respectively).
3.5. Internalconsistencyandconvergentvalidity
The internal consistency (Cronbach’s alpha) was 0.74. No associationswerefoundbetweenoutcomeexpectationsandthe Barthel Index and aphasia, but an association in the expected directionwasobservedwithtimebetweenstartofrehabilitation andquestionnairecompletion.
4. Discussion
Thisstudyshedlightonstrokepatients’outcomeexpectations and their actual fulfilment. We found relatively high outcome expectations, which were fulfilled in half of all patients. No determinants were identified for outcome expectations, but expectationfulfilmentwasassociatedwithlowbaselineexpecta- tionsandimprovedHRQoL.
ThemedianscoreontheCEQExpectancyscalewas21.6,which ishigherthaninapreviousstudyofstrokepatients(mean20.0)[11]
andhigherthanforpatientsundergoingtreatmentforchroniclow back pain (mean 16.4)[17] and fatigue (mean 17.5) [25]. After rehabilitation,theCEQExpectancy-Follow upscoreswere some- whatlowerthanthebaselineCEQExpectancyscores,althoughnot significantly.Nevertheless,accordingtoourdefinition,halfofthe patientshad theirexpectationsunfulfilled.Inline withprevious studiesofstroke,highoutcomeexpectationswererelatedtopoor Fig.2.DistributionoftotalCredibility/ExpectancyQuestionnairescoresatbaseline.
Table2
CEQExpectancyscoresforoutcomefulfilmentforpatientswithstrokeundergoingrehabilitationatbaselineandfollow-up.
CEQExpectancyitems CEQExpectancy
Baseline,all (n=165)
CEQExpectancy Baseline,completers (n=79)
CEQExpectancy-Followup, completers
(n=79)
P-valuea
Item1‘‘Howmuchreductionofyourimpairmentsdoyou thinkwillhaveoccurred/hasoccurredattheendofthe rehabilitationtreatment?’’
7.4(5.8–8.2;1–9) 7.4(5.0–8.2;1–9) 6.6(5.0–7.4;1–9) 0.07
Item2‘‘Howmuchdoyoureallyfeel,atthismoment,the rehabilitationtreatmentwillcontribute/hascontributed todecreasingyourimpairments?’’
8.0(7.0–8.0;1–9) 8.0(7.0–8.0;1–9) 7.0(6.0–8.0;1–9) 0.26
Item3‘‘Howmuchreductionofyourimpairmentsdoyou feelwillhaveoccurred/hasoccurredattheendofthe rehabilitationtreatment?’’
7.4(5.4–8.2;1–9) 7.4(5.0–8.2;1–9) 6.6(5.0–7.4;1–9) 0.40
Total 21.6(17.0–24.0;5.6–27.0) 20.6(16.6–24.4;5.6–27.0) 20.0(16.4–22.8;3.0–25.4) 0.24
Dataaremedian(IQR,min–max).CEQ:Credibility/ExpectancyQuestionnaire.
aNonparametriccomparisonbetweenbaselineandfollow-up.
Table3
Univariateandmultivariateanalysisoffulfilmentofexpectationsforpatientswithstrokeundergoingrehabilitation.
Unfulfilled (n=39)
Fulfilled (n=13)
Exceeded (n=27)
Univariateanalysis OR(95%CI)a
Multivariableanalysis OR(95%CI)a
Sex,male(n,%) 20(51.3) 10(76.9) 17(63.0) 1.97(0.79–4.91) 2.06(0.82–5.18)
Age,years(mean,SD) 62.9(10.8) 63.7(7.2) 60.0(12.6) 0.99(0.95–1.03) 0.98(0.94–2.03)
Education,high(n,%) 12(30.8) 4(30.8) 9(34.6) 1.29(0.78–2.13) 1.23(0.73–2.05)
BaselineADLindependence,BI(mean,SD) 17.0(12.0–19.0) 16.0(10.0–19.5) 17.5(12.0–20.0) 0.99(0.89–1.09) 0.95(0.84–1.07) Changeinhealthstatus,EQ-5D(mean,SD) 0.03(0.18) 0.14(0.25) 0.14(0.21) 1.35(1.05–1.75) 1.35(1.04–1.75)* Rehabilitationfacility,n=1(n,%) 14(35.9) 5(38.5) 9(33.3) 0.96(0.38–2.42) 0.92(0.34–2.44) Lengthofstay,days(median,IQR) 39.0(28.0–57.0) 35.0(24.0–60.5) 38.0(30.0–66.0) 1.00(0.98–1.02) 1.00(0.98–1.03) Outpatientrehabilitation,yes(n,%) 21(53.8) 6(46.2) 21(77.8) 1.78(0.71–4.44) 1.63(0.64–4.18) Outcomeexpectations,CEQExpectancyscale
totalscore(median,IQR)
23.6(20.2–24.4) 24.4(18.6–24.4) 14.2(12.6–18.4) 0.73(0.63–0.84) 0.70(0.60–0.83)*
ADL:activitiesofdailyliving;BI:BarthelIndex;EQ-5D:Euroqol-5D;IQR:interquartilerange;CEQ:Credibility/ExpectancyQuestionnaire;OR:oddsratio;95%CI:95%
confidenceinterval.
aOddsratioforexpectationsfulfilledorexceeded(n=40)versusunfulfilled(n=39).
*P<0.05
outcomesintermsoffulfilmentofexpectations[13,14].Thisfinding maybeduetotheenduringnatureofmostimpairmentsafterstroke andisanimportantpointofattention[26].
We foundno associations withageand sex,unlike inother studies. Among patients with peripheral joint problems, the expectationsof physiotherapywerehigheramong womenthan men [27]. In shoulder arthroplasty patients, young age was associatedwithhighexpectations[28].Thepreviousfindingofa shortdurationoftheconditionleadingtohighexpectationswas confirmedbyourstudy.Alsoinlinewithastudyofpatientswith shoulderproblems,[29]we foundimprovedHRQoL in patients withfulfilledexpectations.
Ofnote,thefactorshypothesizedtobeassociatedwithoutcome expectationsexplainedonly6.4%ofthevarianceinthemultivari- able regression model. Possibly unmeasured factors such as patients’limited knowledgeoflikely recoveryand physiothera- pists’ encouragements may have raised their expectations.
Psychological factors might have played a role, although the influence will be small because the CEQ Expectancy concerns patients’expectationsregardingthetreatmentitselfandnottheir activeroleinit.
4.1. Limitationsandstrengths
Severallimitationsshouldbementioned.First,theresultsofour studyareapplicabletoonlyasubgroupofstrokepatients(i.e.,8%of all hospitalised patients are referred to a specialised medical rehabilitation facility). Most are discharged home (60–65%), whereas patients with severe impairments, requiring intensive nursing care, and/or with relatively low rehabilitation potential (25–30%)go to a skilled nursing facility. Moreover, within the subgroupofpatientsadmittedformedicalspecialistrehabilitation, thosewithsevereaphasiaandseverecognitiveimpairmentswere notincludedbecausetheywouldbeunabletoindependentlyand reliablycompletethequestionnaires.Thisisanimportantdrawback becausethissubsamplemayhavehaddifferentoutcomeexpecta- tions.Infuturestudiesandclinicalpractice,outcomeexpectations maybeassessedorally.However,forpatientswithcognitiveand/or language-relatedimpairments,theinterpretationoftheCEQmight behampered.Second,aconsiderableproportionofpatients(52%;
86/165)did not completethe follow-upassessment. A possible reasonwasthatintheSCOREstudy,severalquestionnaireswere senttothestudyparticipantswithinashorttimeperiod,which couldhavelimitedtheirwillingnessandabilitytocompletethem all.Althoughthepatientswithandwithoutfollow-updatadidnot differincharacteristicsandoutcomeexpectations,thisisanissue thatneedsspecialattentioninthedesignoffutureobservational studiesofstrokepatients.Third,theuseofaquestionnairenotyet validated in this population can be considered a limitation.
Preliminary results from our study indicated that the internal consistency was acceptable [30] and that the CEQ score was significantly correlated with the time between the start of rehabilitationandquestionnairecompletion.Aseparateandmore comprehensivestudyofpsychometricpropertiesoftheCEQina strokepopulationisrecommended.
Strengthsofourstudyincludethefollowing.Wearethefirstto assessoutcomeexpectationsofstrokepatientsregardingrehabili- tationandtheirfulfilmentinaquantitativemanner.Ascompared tootherstudiesonexpectationsinstroke,ourstudypopulation wasmuchlarger,therebyenhancingtherobustnessofourfindings.
Also,wearethefirsttoexploreexpectationsregardingrehabilita- tion as a whole, in a heterogeneous group with various impairmentsandlimitations.
Altogether,ourstudyyieldsvaluableinsightsthatarerelevant for daily clinical practice. We do not recommend enhancing outcomeexpectationsuponthestartoftreatment,assuggestedin
studies of other populations. Rather, we recommend carefully managingexpectations,consideringthepotentialresidualimpair- mentsafterstroke,topreventdissatisfaction.
5. Conclusion
This study showed that patients’ expectations of stroke rehabilitation are relatively high and cannot be predicted by standardsociodemographicandclinicalfactorsalone.Inhalfofall cases,theexpectationswerefulfilledorexceeded,mostlikelyin patientswithreducedexpectationsonadmissiontoarehabilita- tionfacilityandthosewithimprovedHRQoLattheendoftheir rehabilitation.Moreresearchintotheroleofhealthprofessionals regardingthemeasurement,shapingandmanagementofoutcome expectationsisneeded.
Funding
This work was funded by the Stichting Kwaliteitsgelden MedischSpecialisten(projectno.32853407,2014).
Disclosureofinterest
Theauthorsdeclarethattheyhavenocompetinginterest.
Acknowledgements
We are gratefulto Betsy Nieuwhof and WinkePont for the inclusion of patients and the collection of data,and toGerard Volkerforadviceonthestatisticalanalyses.
References
[1]MendisS,PuskaP,NorrvingB.GlobalAtlasonCardiovascularDiseasePreven- tionandControl.Geneva:WorldHealthOrganisation;2011.
[2]DutchKnowledgeNetworkStroke(KennisnetwerkCVANederland).Bench- markResults(Benchmarkresultaten)2014.Maastricht:DutchKnowledge NetworkStroke;2016.
[3]DutchSocietyofRehabilitationPhysicians(VRA).Treatmentguidelinestroke (BehandelkaderCVA). Utrecht:DutchSocietyofRehabilitationPhysicians (VRA);2016.
[4]KazdinAE.Therapyoutcomequestionsrequiringcontrolofcredibilityand treatment-generatedexpectancies.BehaviorTherapy1979;10:81–93.
[5]DevillyGJ,BorkovecTD.Psychometricpropertiesofthecredibility/expectancy questionnaire.JBehavTherExpPsychiatry2000;31:73–86.
[6]HorvathP.Treatmentexpectancyasafunctionoftheamountofinformation presentedintherapeuticrationales.JClinPsychol1990;46:636–42.
[7]HaanstraTM,vandenBergT,OsteloRW,PoolmanRW,JansmaEP,CuijpersP,de VetHC.Systematicreview:dopatientexpectationsinfluencetreatmentoutcomes intotalkneeandtotalhiparthroplasty?HealthQualLifeOutcomes2012;10:152.
[8]IlesRA,DavidsonM,TaylorNF,O’HalloranP.Systematicreviewoftheabilityof recoveryexpectationstopredictoutcomesinnon-chronicnon-specificlow backpain.JOccupRehabil2009;19:25–40.http://dx.doi.org/10.1007/s10926- 008-9161-0[Epub2009Jan6].
[9]ConstantinoMJ,ArnkoffDB,GlassCR,AmetranoRM,SmithJZ.Expectations.J ClinPsychol2011;67:184–92.
[10]PragerEM,BirkenmeierRL,LangCE.Exploringexpectationsforupper-extrem- itymotortreatmentinpeopleafterstroke:asecondaryanalysis.AmJOccup Ther2011;65:437–44.
[11]SwinnenE,LefeberN,WillaertW,DeNeefF,BruyndonckxL,SpoorenA, MichielsenM,RamonT,KerckhofsE.Motivation,expectations,andusabilityof adrivengaitorthosisinstroke patientsandtheirtherapists.TopStroke Rehabil2017;24:299–308.
[12]WilesR,AshburnA,PayneS,MurphyC.Patients’expectationsofrecovery followingstroke:aqualitativestudy.DisabilRehabil2002;24:841–50.
[13]SteinJ,ShafqatS,DohertyD, FratesEP, FurieKL.Patientknowledgeand expectationsforfunctionalrecoveryafter stroke.AmJPhysMedRehabil 2003;82:591–6.
[14]WilesR,AshburnA,PayneS,MurphyC.Dischargefromphysiotherapyfollowing stroke:themanagementofdisappointment.SocSciMed2004;59:1263–73.
[15]GroeneveldIF,MeestersJJL,ArwertHJ,RambaranMishreAD,VlietVlieland TPM,GoossensPH.PraktijkvariatieindeCVA-revalidatie.Onderzoeksopzet metanalysevanstructuur,procesenuitkomsten.(Practicevariationinstroke rehabilitation.Analysisofstructure,processandoutcomes).NederlandsTijds- chriftvoorRevalidatiegeneeskunde2015;3:134–7.
I.F.Groeneveldetal./AnnalsofPhysicalandRehabilitationMedicine62(2019)21–27 26
[16]WorldMedical AssociationDeclaration ofHelsinki:Ethical Principlesfor MedicalResearchInvolvingHuman,Subjects.JAMA2013;310:2191–4.
[17]SmeetsRJ,BeelenS,GoossensME,SchoutenEG,KnottnerusJA,VlaeyenJW.
Treatmentexpectancyandcredibilityareassociatedwiththeoutcomeofboth physicalandcognitivebehavioraltreatmentinchroniclowbackpain.ClinJ Pain2008;24:305–15.
[18]HaanstraTM,TilburyC, VerdegaalS,NelissenRGHH, deVetHCW,Vliet VlielandTPM, Ostelo RWJG. Patients’ pre-operative general and specific outcomeexpectationspredictpostoperativepainandfunctionaftertotalknee andtotalhiparthroplasties.ScandJPain2018;18:457–66.
[19]MahoneyFI,BarthelDW.Functionalevaluation:theBarthelIndex.Maryland StateMedJ1965;14:61–5.
[20]DeRenzieE,VignoloLA.Thetokentest:asensitivetesttodetectreceptive disturbancesinaphasics.Brain1962;85:665–78.
[21]DuncanPW,WallaceD,LaiSM,JohnsonD,EmbretsonS,LasterLJ.Thestroke impactscaleversion2.0.Evaluationofreliability,validity,andsensitivityto change.Stroke1999;30:2131–40.
[22]PermanentonderzoeknaardeLeefstituatie(DutchLifestyleSituationStudy);2010, http://www.scp.nl/Onderzoek/Bronnen/Beknopte_onderzoeksbeschrijvingen/
[Accessed24-Oct-2017].
[23]TheEuroQolGroup.EuroQol-anewfacilityforthemeasurementofhealth- relatedqualityoflife.HealthPolicy1990;16:199–208.
[24]BrooksR.EuroQol:thecurrentstateofplay.Healthpolicy1996;37:53–72.
[25]Vos-VromansDC,HuijnenIP,RijndersLJ,WinkensB,KnottnerusJA,Smeets RJ.Treatmentexpectationsinfluence theoutcome ofmultidisciplinary rehabilitation treatment in patients with CFS. J Psychosom Res 2016;83:40–5.
[26]Carod-ArtalFJ,EgidoJA.Qualityoflifeafterstroke:theimportanceofagood recovery.CerebrovascDis2009;27:204–14.
[27]MetcalfeCJ,KlaberMoffettJA.Dopatients’expectationsofphysiotherapy affect treatment outcome? Part 1: Baseline data. Int J Ther Rehabil 2005;12:55–62.
[28]HennRF,3rd,GhomrawiH,RutledgeJR,MazumdarM,MancusoCA,MarxRG.
Preoperativepatientexpectationsoftotalshoulderarthroplasty.JBoneJoint SurgAm2011;93:2110–5.
[29]O’MalleyKJ, RoddeyTS, Gartsman GM,CookKF. Outcomeexpectancies, functionaloutcomes,andexpectancyfulfillmentforpatientswithshoulder problems.MedCare2004;42:139–46.
[30]NunnallyJ,BernsteinL.Psychometrictheory.NewYork:McGraw-HillHigher, INC;1994.
