Supporting doctor-patient communication: Providing a question prompt list and audio recording of the consultation as communication aids to outpatients in a cancer clinic
Anita Amundsen
a,*, Svein Bergvik
b, Phyllis Butow
c, Martin H.N. Tattersall
d, Tore Sørlie
e,f, Tone Nordøy
a,eaUniversityHospitalofNorthNorway,OncologyDepartment,Tromsø,Norway
bDepartmentofPsychology,UiT–TheArcticUniversityofNorway,Tromsø,Norway
cCentreforMedicalPsychologyandEvidence-basedDecision-making(CeMPED),SchoolofPsychology,UniversityofSydney,Sydney,NSW,Australia
dCentreforMedicalPsychologyandEvidence-basedDecision-Making(CeMPED),SydneyMedicalSchool,UniversityofSydney,Sydney,NSW,Australia
eDepartmentofClinicalMedicine,UiT–TheArcticUniversityofNorway,Tromsø,Norway
fDepartmentofMentalHealthandAddictions,UniversityHospitalofNorthNorway,Tromsø,Norway
ARTICLE INFO Articlehistory:
Received12October2017
Receivedinrevisedform20March2018 Accepted21April2018
Keywords:
Cancer Communication Shareddecision-making Questionpromptlist Consultationaudiorecording
ABSTRACT
Objective:Todocumenttheeffectofacancerspecificquestionpromptlist(QPL)onpatientsquestion asking and shared decision-making (SDM), and to evaluate the combined effect of the QPL and consultationaudiorecording(CAR)onpatientoutcomes.
Method:ThisexploratorystudycomparedtwogroupsofpatientsreceivingeitheraQPLorcombinedQPL/
CAR,toacontrolgroup.Measurementsincludednumber/typesofquestionsasked,andphysicianSDM behavior(OPTIONscore).Questionnairedataincludedanxiety/depressionandqualityoflife(QoL).
Results: Atotalof 93patientsparticipated(31Control,30QPLand 32Combined). Patients inthe interventiongroupsaskedmorequestionsconcerningprognosis(p<.0001),thedisease(p=.006)and qualityoftreatment(p<.001)thanpatientsinthecontrolgroup,butnoimpactwasfoundontheOPTION score.Anincreaseinmeanconsultationlengthwasobservedintheinterventiongroupscomparedtothe controlgroup(44vs.36min;p=.028).Patientsratedbothinterventionspositively.
Conclusion:ProvisionoftheQPLfacilitatespatientstoaskabroaderrangeofquestions,butdoesnot increasephysicianSDMbehavior.
Practicalimplementation:ThecombinationofQPLandCARseemsfeasibleandshouldbetestedinan implementationstudyfollowingthediseasetrajectory.
©2018ElsevierB.V.Allrightsreserved.
1.Introduction
Evidence based medicine is the cornerstone of medical treatment anditisarguedthatreal evidencebased medicine shouldincludesharingdecisionswithpatientsthroughmean- ingful conversation [1]. Shared decision making (SDM) is definedbyCharlesetal.as involvingatleasttwoparticipants (thephysician and patient) thatboth shareinformation, take stepstobuilda consensusaboutthepreferredtreatment,and agree on the treatment to be implemented [2]. One of the assumptionsunderlyingSDMisthattheinformationisprovided inawaythatisunderstandableandadaptedtotheindividual
patients’ need [3]. The Norwegian health care legislation ensures patients the right to receive necessary information andtoparticipateinSDM[4].
In a UK study of 2331 cancer patients, the vast majority wanted as much information as possible [5]. Patients’ strong preference for information isa consistent finding inover 25 yearsof communicationresearch[6].Askingquestionsduring medical consultations may facilitate physicians to provide information,andithelpspatientsobtainthespecificinforma- tionthatismostimportanttothem.Furthermore,patientswho actively participate in the medical encounter receive more facilitatingcommunicationfromtheir physicians[7].Question prompt lists (QPLs) andconsultation audio-recordings (CARs) arecommunicationaidsthatmayfacilitatequestionaskingand informationrecall.
AQPLisastructuredlistofquestionspatientsmaywanttoask their physician during the medical encounter and has been
* Correspondingauthorat:UniversitetssykehusetNordNorge,Kreftavdelingen, Postboks13,9038Tromsø,Norway.
E-mailaddress:anita.amundsen@unn.no(A.Amundsen).
https://doi.org/10.1016/j.pec.2018.04.011
0738-3991/©2018ElsevierB.V.Allrightsreserved.
xxx–xxx ContentslistsavailableatScienceDirect
Patient Education and Counseling
j o u r n a l h o m e p a g e : w w w . e l s ev i er . c o m / l o c a t e/ p a t e d u c o u
developed for various areas of cancer care [8–10]. QPLs can increase patients’ question asking [11], especially regarding specifictopicssuchasdiagnosisandprognosis[12].Furthermore, ashortenedconsultation length,reduced anxietyand improved information recall are found when the oncologist explicitly addressestheQPL[13].ImplementingQPLsinroutineoncology practiceis feasible, and in a study from2012, 44% of patients providedwithaQPLreportedtohaveuseditduringtheirmedical encounter[14].Thereissomeevidencesuggestingthatpatients askingtargetquestionsmayinfluence physicianstowardsmore SDMbehavior[15].Toourknowledge,thedirecteffectofQPLson SDMhasnotbeenpreviouslyinvestigated.
CARsareaudiorecordingsofconsultationsforthepatientto keep. A Cochrane review found that most cancer patients providedwithanaudio file of theconsultation listenedtothe audiotape,found it valuableand reported that it helped them informtheirfamilyandfriends[16].Inarandomizedcontroltrial (RCT)byHacketal.[17],menwithprostatecancergivenaCARof theirinitialtreatmentconsultation,reportedbeingsignificantly better informed about aspects of their illness and treatment.
Similar results were reported from a RCT of patients with oesophagealcancer [18], wherepatients provided with a CAR from the diagnostic consultation, demonstrated significantly better information retention without experiencing adverse psychologicaloutcomes.
Even thoughboth communication aids arehighly valuedby patients, thecombination of QPL and CAR is sparsely explored exceptforarecentstudyofconsultationsinfourdifferent(non- cancer)outpatientclinics.Inthisstudy,providingthecombination ofaQPLand CAR,positivelyaffectedthepatients’perceptionof beingadequatelyinformed[19].
To date,the effect of QPLsonpatients’question asking has mainlybeeninvestigatedincountrieswhereEnglishisthefirst language.However,basedonliteraturereview,thishasnotbeen doneinNorway.
Thus, theaimofthis studywas toinvestigatetheeffectofa culturally adapted Norwegian QPL [20] separately and in combinationwith a CAR in consultations withnewly admitted patientstoanoutpatientcancerclinic.Ourstudywasdesignedto testwhethertheQPLincreasedthenumberofquestionsaskedby patients/caregiver in a Norwegian setting. Furthermore, we explored if and how the QPL affected the degree to which physiciansincludedpatientsinSDM.Wealsoexaminedtowhat extenttheQPL,andthecombinedQPLandCAR,affectedpatients’ satisfaction, their anxiety/depression and quality of life (QoL) compared withcancerpatientsreceiving consultationswithout thesetools.
2.Method
2.1.Setting
ThestudywasconductedattheCancerOutpatientClinicatthe UniversityHospitalofNorthNorway(UNN),servingpatientswith awide rangeof cancerdiagnosesfromthethreenorthernmost countiesinNorway.
2.2.Participants 2.2.1.Physicians
PhysiciansintheOncologyDepartmentreceiveaminimumof oneyearofclinicaltrainingbeforeseeingnewlyadmittedpatients attheOutpatientClinic.Thephysiciansfulfillingthisrequirement wereinvited toparticipate in the study and written informed consentwasobtained.Physiciansinvolvedinplanningtheproject wereexcluded(fourseniorphysicians).
2.2.2.Patients
PatientswererecruitedfromtheCancerOutpatientClinic at UNN in three different time periods (assuming no seasonal variationintheadmittedpatients).Weaimedtohaveonegroup ofpatientsasahistoriccontrolgroup(Controlgroup),onegroupof patients receiving the QPL only (QPL group) and one group receivingbothQPLandCAR(Combinedgroup).Therecruitment occurredintheperiodsofApriltoJune2014(Controlgroup),April toJune 2015 (QPLgroup) and Novemberto January2015/2016 (Combinedgroup).Eligibilitycriteriaincludedage18to75,newly admittedtotheCancerdepartment,Norwegianspeakingandno cognitivedysfunction.Thecombinedgroupalsohadtohaveaccess toacomputertoplaytheaudiorecording.
AuthorAAidentifiedpatientsfromtheparticipatingphysicians’ outpatientlists.Eligiblepatientsreceivedaletterofinvitationone weekpriortotheirappointment.Allparticipatingpatientssignedan informedconsentformandcompletedthefirstquestionnairepriorto theconsultation,whichwasaudiorecorded.PatientsintheQPLand CombinedgroupreceivedtheQPLbymailpriortotheconsultation.
PatientsintheCombinedgroupreceivedtheCARonamemorystick immediatelyaftertheconsultation.Oneweekaftertheconsultation, allpatientsreceivedasecondquestionnairebymail.
2.3.Studydesign
Thisexploratory study was carried out witha quasi-experi- mentaldesign.Thedatacollectionfromthecontrolgroupreceiving regular care was completed prior to the recruitment of the intervention groups to minimize any learning effect on the physicians.In the first intervention group(QPLgroup) patients received the QPL prior to the consultation and in the second interventiongroup(Combinedgroup)theyreceivedtheQPLbefore consultationandaCARaftertheconsultation.Neitherthepatients northephysicianswereblindedtotheinterventions.Fig.1shows thestudydesign.
2.4.Interventions 2.4.1.QPL
TheNorwegianQPLisa4-pageA5booklet(AppendixA)that appliestomostoncologyconsultations,andwaspreviouslyshown to have face validity and high patient acceptability [20]. The physicianswereaskedtoaddresstheQPLasearlyaspossibleinthe consultation andtoencouragetheuseoftheQPL andquestion askingingeneral.
2.4.2.Consultationaudiorecord(CAR)
ACARwasprovidedtopatientsintheCombinedgrouponly.The researchnursecopiedtheCAR froma handheldaudiorecorder ontoamemorystick.Thememorystickwashandeddirectlytothe patient,andacopywasstoredintheresearchdatabase.
2.5.Analysisoftheaudiofiles(Immediateresults)
MedicaltranscriptionstaffatUNNtranscribedalltheaudiofiles verbatim.Twotrained psychologystudentsatthemasters level codedtheconsultations.
2.5.1.Questionsaskedbypatients/caregivers
Amanual forcoding thequestionswas developedtoensure reliablecoding.Thephysicians’verbalattempttoinvitepatientsto askquestionswascodedeitherasabsent,basicorextendedandin whatpartoftheconsultationitoccurred(beginning,middle,end).
Extendedinvitationwascoded ifthephysician emphasizedthe importance of asking questions. The patient and caregiver questionswerecodedseparatelyintooneof14categories.
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2.5.2.ObservedSDM
The OPTION 12 scale measures to what degree physicians engage patients in SDM [21]. It is widely used and proved applicablein theoncologysetting [22].Thescale consistsof12 itemsevaluatingdoctorSDMbehaviorduringaconsultation.All theitemsareratedfrom0to4,where0indicatestheabsenceof SDMbehaviorand4indicatesexcellentperformance.
SBand AAtrained thecoders, and afteraninitialconsensus coding of OPTION on 11 consultations, individual coding was performed.Thecodingagreementwasregularlycheckedthrough- outthecodingprocessanddifferenceswerediscussedbySB,AA andthetwocoderstoensureconsistentcoding.
ThedatawereaggregatedbycalculatinganOPTIONsumscore, whichwastransformedintoascalerangingfrom0(leastinvolved) to100(mostinvolved)asrecommendedbyElwynetal.[21].
2.6.Questionnairedata
Patientcharacteristicsweregatheredinthepreconsultation questionnaireandincludedage,gender,maritalstatus,education, occupation and main language. The physician characteristics includedgenderandiftheywerespecialistsinoncology.
Theanxiety/depressionlevelsweremeasuredbeforeandone week after the consultation using the Hospital Anxiety and DepressionScaleHADS[23],consistingof14itemsmeasuringthe currentlevelofsymptomsofanxietyanddepression.Highscores indicateahigherlevelofanxiety/depression.
Healthrelatedqualityoflifewas measuredbytheEuropean OrganizationforResearchandTreatmentofCancer(EORTC)QoL- C30Version3.0[24]priortoandoneweekaftertheconsultation.
Highscoresindicatebetterqualityoflife.
TheControlPreferenceScale(CPS)[25]differentiatesbetween patients preferring an active, passive or collaborative role in decision-makingandwasusedtoaddressthepatients’preferred levelofinvolvementinthepreconsultationquestionnaire.
TheCancerPatientExperiencesQuestionnaire(CPEQ)[26]isa Norwegianvalidated self-reportinstrument covering important aspectsofoutpatientcancercareandconsistsof6subscales.Inthis project, we used the scales concerning doctor contact and information retrieved.Thepossible scoresonboth scalesrange from0to100,andahighscoreindicatehighsatisfaction.
2.7.Statistics
The sample size calculation was performed to decide the necessary sample size to detect significant differences in the numberof questionsbetweenpatientsreceiving theQPLand a
control group. Initially, there was nosimilar previous research froma Norwegian setting,and thesample size calculationwas basedoninternationalfindings.WeexpectedNorwegianpatients toaskonaverage12questions(SD6)duringtheconsultationand assumeda30%increasetobeclinicallysignificant.Wechosea2:1 ratio(mergingtheQPLandcombinedQPL/CARvsnointervention).
The sample size calculations indicated that 27 patients were needed in the Control group to have 80% power to detect a differenceona5%significancelevel.
Differences between thecontrol groupand thetwo merged intervention groups ontotal amount of questions, consultation lengthandontheOPTIONscorewereanalyzedbyindependent samplet-test.Differencesregardingsubgroupsofquestionswere analyzedwithMann-WhitneyUtestduetoaskeweddistribution withhighproportionofzerocounts.Differencesbetweenthethree individual groups on questionnaire data were analyzed using ANOVA and ANCOVA model. Effect sizes were provided by calculatingCohen’sdandPartialEtaSquared.
The inter-rater reliability was analyzed using theintra-class correlation coefficient (ICC). All the statistics were performed usingtheStatisticalPackagefortheSocialSciences(SPSS)version 23.
3.Results
3.1.Participants
AllthephysiciansworkingattheCancerOutpatientClinicat UNN consented to participate in all three phases, except one physicianwhodidnotparticipatewhenincludingpatientsinthe Combinedgroup.The93consultationsweredistributedamong22 differentphysicians,eachhaving between1 and9participating patients throughout thethree time periods of the study. Most consultations were conducted with senior (61%), male (56%) physicians.
Intotal,150patientswereinvitedtoparticipateinthestudy, and34of46(74%)acceptedintheControlgroup,31of43(72%) accepted inthe QPLgroup and 34 of61 (56%) acceptedin the Combined group.Amongthepatientsaged65 to75 years who wereaskedtoparticipateintheCombinedgroup,only10of25 (40%) accepted. Of the 15 non-participating patients, eight reportednothavingaccesstoa computer,onereportedtohave accessandforsixpatientsthesedataweremissing.
Sixoftheconsultationswerenotaudiorecorded.Twoofthese were in the Control group, where the doctor did not feel comfortablerecordingtheconsultation,onewasduetotechnical failure,twowerebecausetheconsultationswererescheduled,and Fig.1.Flowdiagramofthestudydesign.
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onepatientintheCombinedgroupdeclinedtoparticipatebefore theconsultation.
WhiletheCombinedgrouphadanevengenderdistribution,the Controlgroupincludedrelativelymorefemalepatients(65%),and theQPLgroupmoremalepatients(63%).Thegenderdistributionin thegroupswasreflectedintheproportionoftheprimarytumor sitebeingeitherbreastorprostatecancer.Table1showsbaseline characteristicsanddemographicsofthepatientsinthestudy.
3.2.Analysisofaudiorecords
TheanalysisinthissectionconcernstheeffectsoftheQPLon events occurring during the consultation. The results from patientsreceivingtheQPL (QPLandCombined grouptogether, n=62)werecomparedtotheControlgroup(n=31).Thesecond intervention in the Combined group (CAR) occurred after the consultation and did not affect the consultation. The mean consultation length for patients receiving the QPL (QPL and Combined group) was significantly longer, 44 (SD16) minutes comparedto36(SD16)minutesintheControlgroup(t= 2.23, p=.028).
3.2.1.Questionasking
Theinter-raterICCforthetotalamountofquestions(computed from27consultationscodedbybothcoders)indicatedagoodinter raterreliability(ICC=0.84).Meannumberofpatientquestionsin thegroupsreceivingtheQPL(QPLandCombinedgroup)was23 (SD17) compared to 17 (SD15) in the Control group. An independentsamplet-testdidnotrevealanysignificantdifference betweenthesegroups(t= 1.84,p=.070).
Acaregiverwaspresentin17of62consultations(27%)inthe mergedintervention groups (QPLand Combined group) and in sevenof31consultations(23%)intheControlgroup.Meannumber of questionsfromthecaregivers was 9.8(SD15) in themerged interventiongroups(QPLandCombinedgroup)compared to13 (SD17)inthecontrolgroup.Anindependentsamplet-testdidnot reveal any significant difference in caregiver question asking (t=0.47,p=.64).
Inthemergedinterventiongroups(QPLandCombinedgroup), 73%(45of62)ofthephysiciansexplicitlyaddressedtheQPL.Of those addressing the QPL, 51% (23 of 45) did so early in the consultation. The mean number of questions from patients/
caregiversintheseconsultationswas35(SD25),andsignificantly highercomparedto19(SD12)inconsultationswherephysicians addressedtheQPLlater(t=2.8,p=.008).In15%oftheintervention consultations(9of62),thepatientapproached(proceeded)the physicianinaddressingtheQPLandin8%oftheconsultations(5of 62) theQPL was not mentioned atall. Eventhough theywere instructedtoencouragedquestionasking,thephysiciansdidsoin only15%oftheconsultations(9of62).
Thequestionswereoriginallygroupedinto14categories.Due tolownumbersofquestionsinsomeofthecategories,thedata weremergedintorelatedtopicsasdescribedinTable2.
Patientsreceiving theQPL(QPLand Combinedgroup) asked significantlymorequestionsconcerningprognosis,thediseaseand qualityof treatment.These differenceswerealsopresentwhen including caregivers’ questions into the analysis. The patient questions concerning practical issues were significantly more frequent in the Controlgroup,and this differencewas present whenincludingcaregiverquestions.
Table1
Baselinecharacteristicsanddemographicsofpatientsinthe93audio-recordedconsultations.Patientcharacteristicswereretrievedfromquestionnairepreconsultation.The typeofcancerwasretrievedfromquestionnairesoneweekafterconsultation.Goaloftreatmentwasobtainedfromthetranscripts.*ControlPreferenceScalemeasuring patients’preferredlevelofshareddecision-making(SDM)fromthepre-consultationquestionnaire.
Characteristics Controlgroup(n=31) QPLgroup(n=30) Combinedgroup(n=32) Total(n=93)
Noofpatients % Noofpatients % Noofpatients % %
Meanage(SD) 57 63 59 60
Sex
Female 20 64.5 11 36.7 16 50.0 47 50.5
Male 11 35.5 19 63.3 16 50.0 46 49.5
Accompanyingrelatives 7 22.6 12 40.0 5 16 24 26
Maritalstatus
Married 19 61.3 18 60.0 17 53.1 54 58.1
Partnered 5 16.1 2 6.7 6 18.8 13 140
Unmarried 7 22.6 10 33.3 9 28.1 26 28.0
Education
Year10andbelow 8 25.8 6 20.0 4 12.5 18 19.4
Year10/HSC 12 38.7 9 30.0 15 46.9 36 38.7
Highereducation<4yr 7 22.6 10 33.3 7 21.9 24 25.8
Highereducation4yr 4 12.9 5 16.7 6 18.8 15 16.1
Firstlanguage
Norwegian 30 96.8 30 100 30 93.8 90 96.8
Other 1 3.2 0 0 2 6.2 3 3.2
Tumorsite
Colon/anal 5 16.1 6 20.0 5 16.5 16 17.2
Breast 12 38.7 5 16.7 10 31.3 26 28.0
Prostate 0 0 5 16.7 7 21.9 12 12.9
Lung 1 3.2 0 0 0 0 1 1.1
Testicular 2 6.5 3 10.0 2 6.3 7 7.5
Other 6 19.4 7 23.3 6 18.8 20 21.6
Missingdata 5 16.1 4 13.3 2 6.3 11 11.8
Therapeuticgoal
Curative 23 74.2 23 76.7 24 75.0 70 75.3
Palliative 8 25.8 7 23.2 8 25.0 23 24.7
PatientspreferredSDMlevel*
Active 4 12.9 3 10.0 3 10.0 10 11.0
Collaborative 7 22.6 10 33.3 12 40.0 29 31.9
Passive 20 64.5 17 56.7 15 50.0 52 57.1
Consultationlength(mean,minutes) 36 45 43 42
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Table 3 shows number of questions related tothe different topicsforthepatientsandcaregiversmerged,andforthepatients alone.
3.2.2.Observedphysicianshareddecisionmaking
Theinter-raterICCfortheOPTIONscore(computedfrom82 consultationscodedbybothcoders)indicatedagoodinter-rater reliability(ICC=0.85).ThemeanOPTIONscoreinthecontrolgroup was 12.1 (SD7.9) compared to 14.8 (SD9.2) in thetwo merged interventiongroups(QPLandCombinedgroup).Anindependent sample t-test did notfind thesemean OPTIONscores different (t=1.42, p=.16), suggesting no effect of the QPL on SDM as measuredbytheOPTIONscore.
3.3.Patientoutcomes
The analysis of the questionnaire data one week after the consultationcomparedtheControlgroup(n=31),theQPLgroup (n=30)andtheCombinedgroup(n=32),receivingrespectively, nointervention,theQPLandthecombinedQPL/CAR.
Analyzing data using ANCOVAmodel, adjusted for baseline values, did not reveal any differences in scores for anxiety/
depressionandQoLoneweekaftertheconsultation.
Table4showsthemeanscoresforanxiety,depressionandQoL oneweekaftertheconsultation.
Therewasnosignificantdifferencebetweenthethreegroupsin howthepatientsevaluatedtheconsultationswithrespecttothe perceivedphysiciancontactandinformationretrieved.
Table 5 shows patients’ rating of physician contact and informationretrieved.
3.3.1.Patients’assessmentofthecommunicationaids
OfthepatientsreceivingtheQPL(QPLandCombinedgroup),53 of56(95%)saidtheyreadit,and41of55(75%)saidtheyusedit duringtheconsultation.Thirty-fiveof56(66%)reportedittobe useful toa large/verylargeextent.Furthermore37 of 56(66%) thoughtitmightbeusefulinfurtherconsultations.
IntheCombinedgroup,thepatientsreceivedtheCARdirectly after the consultation. In the questionnaire one week after consultation, they wereasked toevaluate this communication aid,and14ofthe30respondingpatients(47%)reportedthatthey hadlistenedtotheCARoneormoretimes.Ofthe14patientswho hadlistenedtotheCAR,11reportedittobeusefultoalargeextent, twopatientsreportedittobeusefultosomeextentandonepatient reportedittobelessuseful.Ofthe16patientswhodidnotlistened totheCAR,sevenpatientsstatedthattheywouldlistentoitlater, threesuggestedtheymightlistentoitlaterandfourstatingthey wouldnotlistentoit.Sevenpatientslettheirpartner/spouselisten totheCAR,twopatientsshareditwiththeirchildrenandonehad otherfamily/friendslistentoit.
4.Discussionandconclusion
4.1.Discussion
Acknowledgingtheimportanceofcommunication,thisstudy explored communication aidsin a Norwegianoncology setting.
Thestudywasdesignedasanexplorativeinterventionstudyofa QPLaloneandincombinationwithaCARcomparedwithregular consultations.
PatientsprovidedwiththeQPLdidnotaskmorequestionsin total,buttheytendedtoaskabroaderrangeofquestions,including morequestionsconcerningprognosis,thediseaseandqualityof treatment.ThisisinlinewithresultsinareviewbyDimoskafrom 2008,suggestingthatQPLsmaycausepatientstoshifttheirfocus ofattentionawayfromdiseasehistoryandtreatmenttoprognosis anddiagnosis[12].Inourstudy,thenumberofquestionsfromthe Table2
displaysthe14codingcategoriesthequestionswerecodedinto,andthemerged groupsofrelatedtopics.
1.Treatment Treatment
2.Practical Practical
3.Prognosis Prognosis
4.Diagnosis Thedisease
5.Tests
6.Sourcesofinformation
7.Treatmentoptions Qualityoftreatment
8.Multidisciplinaryteam 9.Optimalcare
10.Lifestyle Support
11.Costs 12.Relatives
13.Whenandhowtoaskquestions Other 14.Other
Table3
showsmeannumberofquestionsrelatedtothedifferenttopicsforpatientandcaregivermergedandforpatientsalone.Thedataonspecificgroupsofquestionswere analyzedusingMann-WhitneyUtestandanalysisoftotalamountofquestionsweredoneusingindependentsamplet-test.
Topic Questionsfrompatientsandcaregivers Questionsfrompatients
QPL/Combinedgroup n=62
Controlgroup n=31
Differencein mean
Pvalue QPL/Combinedgroup n=62
Controlgroup n=31
Differencein mean
Pvalue
Treatment 10.4 8.4 2.0 0.05 9.2 7.5 1.7 0.09
Practical 3.0 4.7 1.7 0.041 2.5 4.0 1.5 0.03
Prognosis 1.7 0.2 1.5 <0.001 1.7 0.1 1.6 <0.001
Thedisease 5.6 2.9 2.7 0.002 5.0 2.5 2.5 0.001
Qualityof treatment
1.5 0.2 1.3 <0.001 1.5 0.1 1.4 <0.001
Support 1.8 1.3 0.5 0.11 1.8 1.4 0.4 0.10
Other 2.1 2.2 0.1 0.42 2.0 1.7 0.3 0.25
Total 26.1 19.8 6.3 0.15 23.4 16.9 6.5 0.07
Table4
showsthemeanscoresforanxiety,depressionandtotalQoLasmeasuredbyHADS andEORTCQoL-C30oneweekaftertheconsultation.Thescoresaredisplayedby group,andANCOVAwasusedtodetectdifferencesbetweenthegroups.PartialEta Squaredwascalculatedtodisplayeffectsizes.
Control QPL Combined PartialEtaSquared Pvalue Mean(SD)
Anxiety 3.9(3.4) 3.6(3.2) 4.5(3.1) 0.008 0.73 Depression 2.0(2.6) 2.5(2.9) 2.6(2.5) 0.026 0.38 QualityofLife 64(20) 67(19) 70(20) 0.038 0.27
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patientsandcaregiverswashigherintheconsultationswherethe physiciansaddressedtheQPLearlyintheconsultation,suggesting anadditionaleffectwhenphysiciansaddresstheQPL.
EventhoughthepatientsinourstudyprovidedwiththeQPL did ask more questions concerning prognosis and quality of treatment (including treatment options), the analyses did not demonstrateanyincreaseinobservedSDMbehavior.Knowledgeof the prognosis and treatment options are essential to enable physicians to decide on which treatment to offer. A shift in consultationstowardsdiscussingtheseelementsmorethoroughly mighthelppatientsincreasetheirabilityanddesiretoparticipate inSDM.Astudyfrom2011exploringtheeffectofstandardized patientsaskinggeneralpractitionersfortreatmentoptions,their benefitandharmsandthelikelihoodofthesetohappen,found increasedphysicianSDMbehaviorasmeasuredbyOPTION[15].
WhereasprovidingaQPLmainlytargetspatients,theOPTION score only measures physician behavior. One can argue that a procedurefocusingonproviderbehavioralone,andnotintegrating the patientsactivity, is problematic since the concept of SDM includes some sort of patient participation. Although patients’ behaviorwillaffectphysicianbehavior,amoreintegrativemodel for measuringSDM includingpatient behavior, as proposedby Clayman[27],mighthavebeenmoreappropriate.
Neither anxiety/depression nor QoL at one-week follow-up wereaffectedbythetwointerventions.Bothcommunicationaids were well received by patients in this study, but neither the patients’ experience with physician information nor physician contact was affected by the QPL or the combined QPL/CAR. A nationwidestudyfrom 2009,including7212Norwegian cancer patients, reported a relatively lower CPEQ mean score (68) on satisfactionwithinformationretrieved[28]comparedto76inthe Controlgroup,79intheQPLgroupand81intheCombinedgroup inourstudy.Thesesscoresareindicatingthat,comparedtothe nationallevel,thepatientsinthisstudyfeltwellinformed.The questionnaireevaluatingthecommunicationaidswasscheduled oneweekaftertheconsultation.Thismighthavebeentoosoon after the consultation to evaluate the effect of CARs, since a relativelylargeproportionofpatientsstatedtheywouldlistento theCARlater.
Our studyrevealeda significantincreasein theconsultation lengthwhenpatientswere providedwith theQPL.In contrast, Brownet al.[13] foundphysicians’endorsement of theQPL to shortentheconsultationlength.WhileBrownetal.includedonly ninephysiciansfromtwouniversityhospitals,ourstudyincluded 22physiciansfromoneuniversityhospital.Physiciancompliance toencouragequestionaskingwaslowinourstudy(only15%)and mightbea resultofincludingseveralphysicianswithavarying interestincommunication.
NewlyadmittedpatientstheCancerOutpatientClinicatUNN arescheduledwithatimeframeofapproximately40min,andan increased consultation length might be a challenge in a busy outpatient clinic. On the other hand, providing patients with necessary information is time consuming, and subsequent consultationsmightbeshorterbecausemoretopicshavealready beendiscussed.
One advantage in this study is that nearly all the eligible physiciansatthis cancerdepartmentparticipated. Manyformer
studies have included one or few physicians from different institutions, and this might be those particularly interested in communication.
Limitationsinthisstudyincludethelimitationofasinglecenter studyandthesmallsampleofpatients.Thisexploratorystudyhad a quasi-experimental design with the entire control group preceding the consecutive intervention groups. Although not conductedasaRCT,thisdesignmightbebeneficialtominimizeany learningeffectoftheQPLinterventiononphysicians.Thenumber ofpatientsacceptingtheinvitationintheCombined groupwas considerablylower thanfor theothergroups, and someof the differencewasduetonothavingaccesstoacomputertolistento the audio file. Still, other factors might have affected the participationrateinthispartofthestudy.
Thisstudyonly includedpatientswho werewellenoughto attendanoutpatientconsultation,makingitdifficulttogeneral- ize the results to an inpatient setting. Furthermore, it only explored the impact of the communication aids in a primary consultation at the Oncology clinic and not throughout the diseasetrajectory.
4.2.Conclusion
OurresearchshowedthatprovidingpatientswithaQPLdidnot affecttotalamountofquestionsfrompatientsandcaregivers,but increasedspecificquestionsconcerningprognosis,thediseaseand quality of treatment. Despite the QPL facilitating patients and caregiverstoaskmorequestionsconcerningprognosisandquality oftreatment,importantelementsinthedecisionmakingprocess, itdidnotaffectphysicianSDMbehavior.Eventhoughwedidnot findanysignificantchangeinpatientoutcomeswhencombining the QPL and a CAR, patients rated both communication aids positively. We also observed a significant increase in mean consultationlengthin theintervention groupscomparedtothe controlgroup.
4.3.Practicalimplication
WhiletheQPLcanbeimplementedeasilyinroutinecare,CARs needadditionaltechnicalsolutionstobesuitableasstandardof care.CARsprovidedtopatientsneedtobeintegratedinthework flowandalsotakecareofthejuridicalaspectofprovidingpatients withCARs.Thus,providing thecombination ofQPL andCAR as routinepracticeintheoncologysettingshouldbefurtherexplored inanimplementationstudy.
Ethics
This studywas carried out in accordance withThe Code of EthicsoftheWorldMedicalAssociation(DeclarationofHelsinki).It was declared a quality assurance project by the Regional committee for medical and health research ethics (REK) and approved by the Data Protection Official for research (NSD) representativeatthehospital.Allpatient/personalidentifierswere removedordisguisedsothepatients/personsdescribedare not identifiable and cannotbeidentifiedthroughthe detailsof the story.
Table5
Patients’ratingofphysiciancontactandinformationretrieved.Higherscoresindicatedhighersatisfaction.PvalueforbetweengroupANOVA.PartialEtaSquaredwas calculatedtodisplayeffectsizes.
Controlgroup QPLgroup Combinedgroup PartialEtaSquared Pvalue
Mean(SD)
Physiciancontact(0–100) 81(14) 84(12) 84(11) 0.013 0.42
Informationretrieved(0–100) 76(14) 79(13) 81(13) 0.022 0.18
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Acknowledgements
We are grateful to all the patients and physicians who participated in this studyand Kristin Jensen(study nurse) for helpindatagatheringandpatienthandling.Wealsowanttothank the office staff at the Cancer Outpatient Clinic for their kind facilitation of the study, Inger Sperstad for help creating the database,BjørnStraumefor statisticaladviceandRodWolsten- holmeforhelpinthegraphicaldesign.Thestudywasfundedby theNorthernNorwayregionalhealthauthority;HelseNordRHF.
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