MEETING PROCEEDINGS - APERSU · MEETING PROCEEDINGS ... , integration and use of patient...

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November9-10 2016

MEETING PROCEEDINGS

AlbertaPROMs&EQ-5DResearch&SupportUnit(APERSU):2ndAnnualEnd-user,BoardofDirectorsandScientificAdvisoryCommitteeMeetingNovember9-10,2016MatrixHotelEdmonton,AB

Alberta PROMs & EQ-5D Research & Support Unit (APERSU), School of Public Health, University of Alberta 2-040 Li Ka Shing Centre for Health Research Innovation, Edmonton, Alberta, Canada T6G 2E1

www.apersu.ca [email protected]

APERSULogo Concept #6

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APERSUAnnualMeeting2016|Page2


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INTRODUCTION

TheAlbertaPROMsandEQ-5DResearchandSupportUnit(APERSU)isanintermediaryofficethatconnectstheEuroQolfoundationwithnon-commercialusersofEQ-5Dinstrumentsandotherpatientreportedoutcomemeasures(PROMs)intheprovinceofAlberta,Canada.ItwasofficiallylaunchedinOctober2015andhasbeeninoperationforoneyearnow.ThisunitsecureslicensingfortheuseofEQ-5Dinstruments,andsupportsresearchanduseoftheseinstrumentsandotherPROMsinAlberta.APERSUwasdevelopedinpartnershipwiththeEuroQolResearchFoundation,AlbertaHealthServices(AHS)andHealthQualityCouncilofAlberta(HQCA),andishostedattheSchoolofPublicHealth,UniversityofAlberta.

APERSU’svisionistoimprovedecisionsbyend-usersandstakeholdersabouthealthandhealthcareinAlbertabypromoting,coordinating,andsupportingtheuseofPROMsincludingtheEQ-5Dforthemeasurementandvaluationofhealth.

Duringthelastyear,wehaveworkedwith66EQ-5Dend-usersintheprovinceofAlberta,andidentifiedapressingneedtolearnmoreabout“usingandimplementingEQ-5Dinclinicalsettings,particularlyprimarycare”.So,wefocusedthisyear’smeetingonthistopic(seeattachedagenda).WeinvitedseveralCanadianandinternationalspeakerstopresentontheirresearchandexperienceinimplementingEQ-5D/PROMsinclinicalpractice.Wealsofoundthatthetopicofeconomicevaluationsisofinteresttoend-users,soweorganizedaneducationalworkshoponthistopicontheseconddayofthemeeting.Additionally,thismeetingwasanopportunitytopresentsomeoftheresearchprojectsthatAPERSUisworkingontoend-usersandstakeholders.

Theeventstartedwiththeend-userconferencelastingforoneandhalfdays.Afterdayoneoftheconference,therewasaBoardofDirectorsmeetingonthemorningofthesecondday,andaScientificAdvisoryCommitteemeetingintheafternoon.Wehosted54people,includingAPERSUstaffandleadership,HQCAandAHSpartners,AlbertaHealth(ministry)representatives,primaryhealthcareandstrategicclinicalnetworksrepresentatives,keyPROMsresearchersfromseveralacademicinstitutionsinCanada,andrepresentativesfromtheEuroQolgroup.

ThismeetingwasfundedbythegeneroussupportoftheEuroQolFoundation.Wewouldliketothankallofourpartnersfortheirinputandfeedbackontheplanningofthismeeting,andallend-userswhoseparticipationmadethismeetingasuccess.

TheAPERSUTeam

November30,2016



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MEETING DETAILS

Day 1: Wednesday, November 9, 2016 Opening Remarks – Jeff Johnson JeffJohnsonandArtoOhinmaa,UniversityofAlberta(APERSUCo-directors)

Presentationtitle:“OverviewandUpdateonAPERSU”Summary:JeffJohnsonandArtoOhinmaaprovidedanoverviewofAPERSUestablishment,agreementsandpartnerships,vision,objectives,collaborations,datasharing,organizationalstructure,andservicesprovidedbytheunit,aswellasanupdateonAPERSU’soperationsandresearchactivities,andfirstannualevaluation.

Keynote Speaker MariaJoseSantana,AssistantResearchProfessor,DepartmentofCommunityHealthSciences,CummingSchoolofMedicine,UniversityofCalgary;AssociateDirectorMethodsSupport&DevelopmentPlatform,AlbertaStrategyofPatientOrientedResearch,AlbertaInnovates–HealthSolutions)

Presentationtitle:“TheRoleofPatient-reportedOutcomesMeasuresinRoutineClinicalCare”Summary:Thefocusofthehealthcaresystemonacutecareneglectsthecareneededbythegrowingcomplexpatientpopulation.Themanagementrequiredbythesecomplexpatientsrequirestheinvolvementofsuchpatientsandtheircaregivers.Theinclusionofpatientreportedoutcomemeasures(PROMs)intheclinicalcareofcomplexpatientspresentsanopportunitytoengagepatientsandcaregiversastheuseofPROMsinclinicalcareimprovespatient-cliniciancommunicationthatpotentiallyleadstoshareinformationandpromotesdecisionmakingandpatient-centredcare.

EQ-5D/PROMs in Primary Care in Alberta

PeterRymkiewicz,DirectorofMeasurementandEvaluation,MosaicPrimaryCareNetwork,Calgary,AB

Presentationtitle:“PatientReportedOutcomeMeasures,InvestinginOrganizationalSuccessSupportedbyEvidenceBasedProgramDelivery”Summary:ThereleaseoftheAuditorGeneralReportalongwithpreviousCIHIreportshavedrawnattentiontotheneedforestablishingeffectiveoversightininformationinfrastructure,systemprocessesandcontrolsinprimarycare.ThenewPCNEvolutiondocumentandrecentworkdonethroughHISCArelatedtohealthcaredatastandardsspeakstoanincreasedProvincialfocusonmeasurement,evaluation,anddeliveryofevidencebasedprograms.Historically,integrationanduseofpatientidentifiableinformationwithinPCNsandwithpartnerssuchasAH&AHShasbeenlimited.Integrationofpatientspecificinformation



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isneededtobettersupportprogramplanningandtohelpPCNsunderstandhowtheirprogramssupportimprovementsinpatientcare.ProvinciallyworkisunderwaytoensureappropriateprivacyagreementsprotectpatientandproviderinformationwhilesupportingcollaborativepartnershipbetweenAHandAHS.MPCNhasbeenworkingsimultaneouslywithmemberphysiciansandinterdisciplinaryteammemberscollectingandusingpatientreportedoutcomemeasurestosupportprogramevaluationandqualityimprovement.TheMPCNhascreatedarobustdatacollection,reportingandevaluationsolutionusingaweb-basedworkloadcollectionandpatientpanelingsystemforallprograms,PCNstaffandPCNmembersandclinicalproviders.Thisnewsystemallowsthemultidisciplinaryteam,PrimaryCareCoordinators(PCCs)andotherdesignatedPCNandclinicresourcestosecurelycapturepatientspecificencounterdatausingadesktopapplicationandweb-portalallowingthePCNtobetterunderstandtheservicesdeliveredatthepointofcare.UsingthissystemMosaicPCNisalsoabletosystematicallycapture,trackandusepatientreportedoutcomessuchastheEQ-5D-5Ltocross-sectionallycomparepatientpopulationsindifferentprograms.MPCNisalsoabletotracklongitudinalchangesinpatients’selfratedhealthresultingfromMPCNprograms.

AnnMakin,Evaluation&OfficePracticeImprovementConsultant,BowValleyPrimaryCareNetwork,Canmore,AB

Presentationtitle:“TheBalanceofInsightandAction”Summary:Likeatightropewalker,theBowValleyPCNevaluatorbalancesreportingrequirementswithrelevanceandreality–allwhilerespectingpatientandproviderrelationships.Doprovidersalwaysknowwhatisbestfortheirpatients?Dopatientsalwaysknowwhatishappeningandwhatisbestforthem?Withacollaborativeblendoftheseinternalandexternalperspectives,amorecompleteandclearpathemerges.PROMSareeffectivetoolsusedtohelpgainthatclarification,deepenunderstandingandprovideavenuestomovefromintelinsightstoaction.Asasmallerorganization,theBVPCNcanhavegreaternimblenessinchangeyetitisalwayschallengedwithresourcescarcity.Inadditiontodatacollectionandanalysisofpatientaccess,demographics,utilizationandhealthoutcomes,thePCNusesPROMStocapturepatientperspectives.TheEQ-5D-5Lisoneofthosetoolsusedinsomeprogramsandindividualconsultations.HearabouttheBowValleyPCN’sPROMSjourneyincludingsomeofthespeedbumpsandinsightsalongtheway.Mightbothpatientsandprovidersgainenhancedclarityandconviction?Isthe‘tightrope’morestablewithabroaderanddeeperrecognitionofEQ5D’svaluedutilityandrelevancetopatientcare?



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AlaynaBurnstad,ClinicManager,EdmontonOliverPrimaryCareNetworkpresentedonbehalfofAlvinYapp,ClinicManager,EdmontonOliverPrimaryCareNetwork Presentationtitle:EdmontonOliverPCNPROMsExperience Summary:TheEdmontonOliverPrimaryCareNetwork(EOPCN)hasbeenworkingwith someformofpatient-reportedoutcomemeasures(PROMs)forthelastfouryears.The

twothathavebeenusedthemostaretheSF-12andtheEQ-5D.PROMswereusedinthreedifferentways:1)asanoutcomemeasure,tomeasureimprovementpre-andpost-aprogram/treatment,2)asapatientassessmentonintake,toprovideinformationaboutthepatienttotheclinicians,and3)asaprogramdevelopmenttool,toinformongoingprogramdevelopment.ThispresentationdescribedhowPROMswereusedineachofthesedifferentwaysandhowtheimplementationofPROMsintheseusecaseswereusefulforEOPCN.ThepresentationwillconcludebydiscussingsomeofthecurrentbarriersandchallengestotheimplementationofPROMs,andfuturedirectionsforPROMsatEOPCN.

ScottOddie,DirectorMeasurementandKnowledgeIntegration,AppliedResearch&EvaluationServices,PrimaryHealthCare,AlbertaHealthServices(APERSUSACMember) Presentationtitle:“PROMsinPCNs:AnEnd-userPerspective”

Summary:APERSUandtheRDC-AHSHealthResearchCollaborativeexaminedtheuseofpatient-reportedoutcomemeasures(PROMs)inclinicalpractice.ThepotentialbenefitsofusingPROMsinclinicalpracticeincludefacilitatingpatient-cliniciancommunication,monitoringdiseaseprogression,andidentifyingsymptomsorproblemsthatareimportanttopatients,whichinturnleadstoimprovementinhealthoutcomes.InAlberta,severalPrimaryCareNetwork(PCN)clinicsareusingPROMsforqualityimprovementpurposes,serviceandprogramevaluation,oraspartofaprovincialreportinginitiative.TheobjectivewastoinvestigatetheuseofPROMs,theirclinicalvalue,andthefactorsthatimpacttheirimplementationfromtheperspectivesofstaffthathaveexperienceinimplementingandusingthesetoolsandthedatageneratedfromthem.Findingsindicatethattheclinicalbenefitsofusingthesetoolshavenotbeenfullyrealized.TheuseofPROMsdatawaslimitedprimarilytoannualreporting.Noneoftheend-usersindicatedanychangesordecisionsmadebasedonPROMsdata.ThemainfacilitatorstoPROMsimplementationinPCNsweretheelectronicadministrationofPROMs,andtheavailabilityofdedicatedandtrainedstaffonPROMsimplementation.ThemainbarrierswerethelackofexpertiseandtrainingontheuseofPROMsdata,andstaffbuy-in,particularlyphysicians.Keyfactorsidentifiedthatwouldimproveimplementationwere1)theelectronicadministrationofPROMs,preferablythroughtheEMR;and2)trainingofcliniciansontheutilityofPROMsinclinicalsettings.Overall,thereseemstobealackofunderstandingofthevariousapplicationsofPROMsinthePCNclinics,whichcouldbeduetothefactorsidentifiedbytheend-users(e.g.,lackofexpertise,time-consuming,workload,etc.).



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Applications of PROMs in Clinical Practice

NickBansback,AssistantProfessor,SchoolofPopulationandPublicHealth,UniversityofBritishColumbia

Presentationtitle:“UsingPROMstosupportinformeddecision-making”Summary:Manypatientsdonothaverealisticexpectationsabouttheoutcomesofhealthcareinterventions.Unrealisticexpectationscanleadtosomepatientsusingornotusinginterventionsthattheylaterregret.Thispresentationwillprovideexamplesofhowroutinely-collectedPatientReportedOutcomeMeasures(PROMs)canbeusedtodescribetheexperiencesofotherpatientstoimproveexpectations.Thiscanleadtoimprovedqualitydecisionsandmoreappropriateuseofhealthcareinterventions.Examplesfromanongoingstudyintotalkneearthroplasty(TKA)inAlbertawillbeprovided.Nearly1in5patientsaredissatisfiedpostTKAsurgeryandexpectationsnotbeingmetistheleadingpredictorofdissatisfaction.ThebroaderimplicationsofusingPROMstosupportdecision-makingonhealthsystemsandpolicywillbediscussed.

RichardSawatzky,CanadaResearchChairinPatient-ReportedOutcomes,SchoolofNursing,TrinityWesternUniversity&CentreforHealthEvaluationandOutcomeScience,ProvidenceHealthCare(APERSUSACMember)

Presentationtitle:“User-centereddesignofanelectronicQualityofLifeandPracticeSupportSystem(QPSS)”Summary:Theimperativeofperson-centeredcarerequiresthatthevoicesofpatientsandfamilycaregiversarerepresentedatalllevelsofhealthcaredecisionmaking.Patient-reportedoutcomemeasures(PROMs)andpatient-reportedexperiencesmeasures(PREMs)areincreasinglyrecommendedforusebycliniciansinclinicalpracticetoguideassessment,careplanning,andinterventionsfromaperson-centeredpointofview.ElectronicsystemshavebeendevelopedtofacilitatetheuseofPROMsandPREMsinclinicalpracticeandtheconcurrentuseofthisinformationtoinformhealthcareadministrationandpolicy.However,withfewexceptions,theroutineuseofthesesystemsatpointofcarehasbeenlimited.Thereisalackofknowledgeabouthowtobestintegratesuchsystemswiththeroutinepracticeofhealthcareteams.Thispresentationwillreportonacollaborativeresearchandintegratedknowledgetranslationinitiativethatseekstobringthequalityoflife(QOL)concernsandhealthcareexperiencesofsomeofsociety’ssickestmembers,andtheirfamilycaregivers(FCGs),totheforefrontofcarebyusinganinnovativeelectronicQOLAssessmentandPracticeSupportSystem(QPSS).11focusgroupsand44interviewswerecarriedoutwithclinicians,patientsandfamilycaregiverstoguidetheuser-centereddesignandintegrationoftheQPSSinpalliativehomeandhospitalcaresettings.ResultsrevealdesirablefeaturesoftheQPSSaswellasenablersandchallengespertainingtoituseinroutineclinicalpractice.SuccessfulimplementationofelectronicQOLassessmentinstrumentsrequiresaddressingconsiderationspertainingtheinstitutionalenvironment,thelocalteamcontext,theperspectivesandexperiencesofindividualcliniciansusingthesystem,andthetechnologyitselfthatneedtobetakenintoaccounttoensuresuccessfulimplementation.



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KaraSchick-Makaroff,AssistantProfessor,UniversityofAlberta,FacultyofNursing Presentationtitle:“Evaluationofreal-timeuseofelectronicpatient-reportedoutcome databynurseswithpatientsinahomedialysisclinic.” Summary:Background:Internationally,theuseofpatient-reportedoutcomes(PROs)is increasing.ElectronicPROs(ePROs)offerimmediateaccessofsuchreportsto healthcareproviders.Theobjectivesofthisstudyweretoassessnurses’perspectiveson theusefulnessandimpactofePROadministrationinahomedialysisclinicandassess patientperceptionsofsatisfactionwithnursingcarefollowinguseofePROs.

Methods:Amixedmethodsstudywasconductedover6monthsduringhomedialysisoutpatientclinicvisitsintwocities.Patients(n=99)providedePROsusingtabletcomputerswhentheyvisitedtheclinicontwooccasionsapproximately3monthsapart.Resultswerescored,printed,andgiventonursesbeforepatientappointments.PatientscompletedsatisfactionitemsfromtheComoxValleyNursingCentreClientquestionnairefollowingtheirappointments.Allclinicnurses(n=11)participatedandtheywereeachinterviewedtwice,threemonthsandsixmonthsafterthestartofthestudy.Results:Thefivethemesthatemergedfromtheinterviewswiththenursesinclude:enhancingfocusofthenurses,directinginterdisciplinaryfollow-up,offeringsupporttopatientsthroughtheprocess,interpretingresultsfromthevisualdisplay,andintegratingintoworkflow.ScoresontheClientQuestionnairesuggestedthatpatientsbelievedthattheyreceivedexcellentcare(85.4%),andthatthenursesunderstoodtheirneedscompletely(88.5%).However,theirsatisfactionwithcaredidnotchangeovertimewhenePROdatawasrepeatedlyprovidedtotheirnurses.Conclusions:NursesreportedthatsharingePROdatainreal-timeinformedtheirpractice.Althoughtherewasnostatisticallysignificantchangeinpatientsatisfactionscoresovertime,somepatientsreportedchangesandbenefitsfromtheuseofePROs.FurtherresearchisneededtoprovideguidanceabouthowePROdatacouldenhancepatient-centeredcare.

TovaLéveillé,Lead,PrimaryDataSupport,Analytics,AlbertaHealthServices

Presentationtitle:“MeasuringHRQOLofInpatientswithCOPD”Summary:ChronicObstructivePulmonaryDisease(COPD)isachronic,progressivelungdiseasethatovertimemakesitincreasinglymoredifficulttobreathe.AprocessimprovementprojectistakingplacewithintwounitsattwohospitalsinCalgaryandisaimedatimprovingthecareofinpatientswithCOPDwhohavebeenadmittedduetoanexacerbation.Improvementsinpatientoutcomeswillbenefitbothpatientsandtheorganization.OneoftheoutcomesoftheCOPDOutcomesImprovementProjectisimprovedhealthrelatedqualityoflife.HRQOLisnotroutinelycollectedforthispatientpopulation,thusaplanforprimarydatacollectionwasdeveloped.Datacollectionmethodsandtoolswerechosenbasedonperceivedburdenonpatientsandstaff,theanticipatedqualityofthedata,privacyconsiderations,timelinessandcost.Thispresentationdescribesthemixed-mode(paperandtelephone),pre-andpost-interventionimplementationofthe



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EQ-5D-5LforinpatientswithCOPDandplanstoanalyzethedataanddisseminatetheresults.

APERSU Student Presentations

KatelynnCrick,PhDCandidate,SchoolofPublicHealth,UniversityofAlbertaPresentationtitle:“PerformanceoftheEQ-5Danxiety/depressiondimensioninassessingmentalhealth”Summary:Severalstudieshavecomparedthemeasurementpropertiesofthe3Land5LversionsoftheEQ-5D,butthereremainslimitedevidenceontheresponsivenessofthe5Lversion.Additionally,theperformanceofindividualdimensionsoftheEQ-5DintermsofdiscriminativeandlongitudinalvalidityincomparisontoothergenericanddiseasespecificmeasuresofHRQLorPROMshasnotbeenfullyexplored.Inparticular,theappropriatenessoftheanxiety/depressiondimensionoftheEQ-5Dformeasuringmentalhealthhasbeenquestioned.Thispresentationdiscussedtheresultsofastudyexaminingtheperformanceoftheanxiety/depressiondimensionofthe3and5levelversionsoftheEQ-5Dinassessingchangesinmentalhealthintwoclinicalpopulations.ResponsivenessoftheEQ-5D-5Lwasexaminedbycomparingchangesintheanxiety/depressiondimensionovertimetochangesinthePHQ9andtheSF-12.ResponsivenessoftheEQ-5D-3Lwasexaminedbycomparingchangesintheanxiety/depressiondimensiontochangesinthePHQ9andtheGAD2.Resultsofthisstudyshowedthatthe5levelversionoftheanxiety/depressiondimensionwasmoreresponsivetochangesinmentalhealththanthe3levelversion.Changeintheanxiety/depressiondimensionforbothversionsperformedbetterwhendiscriminatingbetweenpatientswhosesymptomsworsenedovertimethanpatientswhosesymptomsimprovedovertime.

NathanMcClure,ResearchSupport,AlbertaPROMsandEQ-5DResearchandSupportUnit Presentationtitle:“EstimatingaminimallyimportantdifferenceoftheEQ-5D-5Lindex scoreinadultswithtype2diabetes” Summary:TheEQ-5D-5Lisapreference-basedmeasureofhealthrelatedqualityoflife thatassignsanindexscoretoanindividual’shealthstate.Wecurrentlylackevidenceon whatthepatientconsiderstobethesmallestmeaningfuldifferenceinindexscorei.e.,

theminimalimportantdifference(MID).Weuseddatafromanongoingcohortofadultswithtype2diabetesinAlberta.TheMIDwasestimatedusingtwoapproaches:theinstrument-definedestimationmethod,andtheanchor-basedapproach.Basedontheinstrumentdefinedestimationmethod,theoverallMIDestimatewas0.037-0.049.Acrosssubgroupstheinstrument-definedMIDestimatesrangedfrom0.037to0.053.Forthosewhoreportedsmallchangeinanchors,thechangeinEQ-5D-5Lwas0.031-0.057intheoverallsample,rangingfrom0.025to0.066acrosssubgroups.AcceptableestimatesofMIDfortheEQ-5D-5Lrangedbetween0.031and0.066usinginstrument-definedsingleleveltransitionsandtheanchor-basedapproach.ResearchersmayusetheseMIDvaluesasestimatesofmeaningfuldifferenceorchangeinEQ-5D-5Lindexscoresintype2diabetespatients.



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Day 2: Thursday, November 10, 2016

PROMs in CanadaEllisChow,ProgramLead,PROMs,CanadianInstitutesofHealthInformation(CIHI)

Presentationtitle:“Advancingpan-CanadianstandardsinPROMsforroutinecare”Summary:ThispresentationincludedanoverviewofCIHIandPROMsactivitiessincethelastAPERSUmeeting.ItdescribedCIHI’sactivitiestosupportthedevelopmentofstandardizedPROMSdatacollectionandreporting,includingrecommendationsforPROMsinstrumentsandtheiradministration;describedprogressinpriorityclinicalareas(hiparthroplasty,kneearthroplastyandrenalcare),anddescribedhowcomparablemeasuresandreportswillsupportbothclinicalandhealthsystemdecisionmaking.Anoverviewoffutureactivitiesandplanstoimplementpan-CanadianPROMscollectionandreportinginselectedclinicalareaswasalsoprovided.

EQ-5D/PROMs and Measurement Issues RichardSawatzky,CanadaResearchChairinPatient-ReportedOutcomes,SchoolofNursing,TrinityWesternUniversity&CentreforHealthEvaluationandOutcomeScience,ProvidenceHealthCare(APERSUSACMember)

Presentationtitle:“ModernPerspectivesofMeasurementValidationPertainingtotheUseofPatient-ReportedOutcomeMeasures(PROMs)”Summary:Introduction:Measurementvalidationisfundamentalinthedevelopment,evaluation,anduseofpatient-reportedoutcomesmeasures(PROMs).Thispresentationreportsonareviewofmodernperspectivesofmeasurementvalidation,includingmethodologicalapproaches,toaddressthefollowingquestionsthatareofcentralrelevancetotheuseofPROMsinresearchandhealthservicesdecisionmaking:1)Whatevidenceisneededtowarrantcomparisonsbetweengroupsandindividuals?2)Whatevidenceisneededtowarrantcomparisonsovertime?3)Whatarethevalueimplications,includingpersonalandsocietalconsequences,ofusingPROscores?Results:TheDraper-Lindley-deFinetti(DLD)frameworkofmeasurementvalidationprovidesatheoreticalfoundationfortheuseofstatisticalmethods(factoranalysis,itemresponsetheory,latentvariablemixturemodeling)toevaluatingthedimensionalityofaPROinstrumentanditsmeasurementequivalencefordifferentgroupsandindividuals(question1)byexaminingexchangeabilityofbothmeasurementitemsandsamplingunits(groupsorindividuals).Inadditiontoconventionalmethodsforevaluationoftest-retestreliability,theoriesandmethodsforthedetectionofresponseshift(includingrecalibration,reconceptualization,andreprioritization)provideafoundationforexaminingthecomparabilityofPROscoresovertime(question2).Finally,itisincreasinglyrecognizedthatmeasurementvalidationinvolvescarefulconsiderationofunderlyingvalueimplications,includingpersonalandsocietalconsequences(question3).BecausetheuseofPROshasbothpersonalandsocietalconsequences,wemustevaluatetheintendedconsequencesaswellastheunintendedsideeffects.



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Conclusion:Measurementvalidationisanongoingprocessthatinvolvesthejustificationofinferences,actionsanddecisionspertainingtocomparisonsbetweengroupsandcomparisonsovertimeaswellasconsiderationofvalueimplicationsofusingPROMs.Personalandsocietalconsequencesmustbeexaminedaspartofacomprehensiveapproachtomeasurementvalidation.Thepresentationisbasedonthefollowingforthcomingmanuscript:Sawatzky,R.,Chan,ECK.,Zumbo,B.D.,Bingham,C.,Juttai,J.,Lix,L.,Kuspinar,A.,Sajobi,T.(Forthcoming)Challengesandopportunitiesinpatient-reportedoutcomesvalidation.JournalofClinicalEpidemiology.(AlsopresentedattheInternationalSocietyforQualityofLifeResearch

GoukeJ.Bonsel,DirectorMaternityCareServices-ResearchUnit,UniversityMedicalCenterUtrecht,ProfessorPerinatalCare&PublicHealth,ScientificStaffEuroQolOfficeLargeScaleApplications(APERSUSACMember)

Presentationtitle:“EuroQolQuestionnaire:whatnumbermatters?”Summary:Doctorsassesshealthformanypurposes:tojudgesomethingiswronganyway,toassessseverityconsideringtreatment(changes),totrackchangesaftertreatment,toclassifythepracticepopulationtoqualifyfordeprivationmoney,andtomeasuretheir'output'aspartofqualityassuranceandeconomicevaluationoftheirservices.Thelatterincomparisonwithotherpracticesorregions.IfhealthisquantifiedforcomparativeissuesacrossdiseasessocalledgenerichealthmeasurescomeintoplaylikeEQ-5D,whichalsoqualifiesforeconomicuse,i.e.numbersreflect'preference'.ThequestioniswhetherEQ-5Dcansufficientlydiscriminatiebetweenseveritiesandpatientsingeneral.ThesocalledMinimalImportantDifferenceisanimportantfeatureforpracticaluse.WeshowdataonEQ-5D,takingaccountofdifferentperspectivesofuseandmodesofitscomputation.

Workshop: Introduction to Economic Evaluations MikePaulden,AssistantProfessor,SchoolofPublicHealth,UniversityofAlberta Summary:MikePaulden(withtheassistanceofFatimaAlSayah)gaveabriefoverview

ofeconomicevaluationsandtheirimportanceinevaluatingthevalueformoneyofhealthcaretechnologiesandinterventions.Mikediscussedthestepsofconductinganeconomicevaluation,andthendividedtheattendeesintogroupstoworkonasimpleexerciseofdefiningtheeconomicquestion,calculatingQALYsandcostsassociatedwithinterventionsbeingvalues,calculatingincrementalQALYsandcosts,andcalculatingandinterpretingICER,andfinallydiscussedseveralissuesthatneedtobeconsideredineconomicevaluationsincludingmissingdata,timehorizon,discountingamongothers.



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LOOKING AHEAD Goingforward,AlbertaPROMsandEQ-5DResearchandSupportUnit(APERSU)willbuildonthefeedbackandinputofend-usersandkeystakeholdersinAlbertaandEQ-5D/PROMsresearcherstoenhanceAPERSUservicesandactivities,aswellastofurtherdevelopAPERSU’sresearchandcollaborations.TheBoardofDirectorsmetonthemorningofDay2oftheAPERSUmeetingpriortothemainplenarytakingplace.WediscussedAPERSU’s1stAnnualReportatlength,discussedpotentialofAlbertaHealthcontributingfundingtoAPERSUtohelpfundadditionalstaffand/orstudents.APERSU’sScientificAdvisoryCommittee(SAC)metafterthegeneralend-usermeeting,wediscussedAPERSU’s1stAnnualReportinthismeetingandwhatresearchinitiativeswewillbeabletoundertakewiththeresourceswecurrentlyhave.APERSUhashiredaResearchCoordinatortoleadoneoftheinitiativeswearecurrentlyundertaking(EMPATHYTrial),wearesearchingforaPost-DoctoralFellowtohelpmoveourresearchagendaforward.



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MEETING EVALUATION

WeaskedtheparticipantsattheAPERSUend-usermeetingtoevaluatedifferentaspectsofthemeetingusingthefollowingsurvey.Wereceived24completeforms;thefollowingscoresarethemeanofscoresofthe24participants.Overall,themeetingwasasuccess.

Meeting Organization and Proceedings Average Usingthescale1to5(where1isunsatisfactoryand5isverygood)howwouldyourate: Thegeneralorganizationofthemeeting 4.9Meetingagenda 4.6Timeallocatedtodiscussion 4.5Thevenueanditsfacilities 4.9Meeting Sessions & Presenters Usingthescalefrom1to5(where1isunsatisfactoryand5isverygood)howwouldyouratethefollowing:

TheroleofPatient-ReportedOutcomeMeasuresinRoutineClinicalCare(MariaSantana) 4.3OverviewandupdateofAPERSU(JeffJohnsonandArtoOhinmaa) 4.6PatientReportedoutcomemeasuresinorganizationalsuccesssupportedbyevidencebasedprogramdelivery(PeterRymkiewicz)

4.6

Thebalanceofinsightandaction(AnnMakin) 4.4EdmontonOliverPCNPROMsExperience(AlaynaBurnstad) 4.3PROMsinPrimaryCareNetworks:Anend-users’perspective(ScottOddie) 4.6UsingPROMstosupportinformeddecisionmaking(NickBansback) 4.8User-centereddesignofanelectronicQPSS(RickSawatzky) 4.6Evaluationofreal-timeuseofelectronicpatient-reportedoutcomedatabynurseswithpatientsinahomedialysisclinic(KaraSchick-Makaroff)

4.5

MeasuringHRQOLofInpatientswithCOPD(TovaLeveille) 4.4PerformanceoftheEQ-5Danxiety/depressiondimensioninassessingmentalhealth(KatelynnCrick)

4.3

EstimatingaminimallyimportantdifferenceoftheEQ-5D-5Lindexscoreinadultswithtype2diabetes(NathanMcClure)

4.4

Advancingpan-CanadianstandardsinPROMsforroutinecare(EllisChow) 4.3ModernPerspectivesofMeasurementValidationpertainingtoPROMs(RickSawatzky) 4.6Minimalimportantdifference(MID)oftheEQ-5D(GoukeBonsel) 4.4Workshop:IntroductiontoEconomicEvaluations(MikePaulden) 4.5Relevance to Your Work Usingthescalefrom1to5(where1istheminimumand5themaximum)howwouldyourate:

Relevanceofthismeetingtoyourcurrentworkorfunctions 4.7Relevanceofthemeetingtoyourinstitution'sneed 4.5Overallusefulnessforyouoftheinformationthatyouhaveacquired 4.8Overall Assessment of the Meeting Whatisyouroverallassessmentofthemeeting? 4.8



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LIST OF ATTENDEES [email protected]

Dr.JeffJohnson(APERSUCo-director)[email protected](APERSUCo-director)[email protected](APERSUResearchManager)[email protected](APERSUResearchAdministrator)[email protected](APERSUResearchCoordinator)[email protected]

Name Title&Institution EmailBakal,Jeff Statistician,Universityof

[email protected]

Bansback,Nick AssistantProfessor,SchoolofPopulationandPublicHealth,UniversityofBritishColumbia

[email protected]

Bonsel,Gouke ScientificStaffEuroQolOfficeLargeScaleApplications(APERSUSACMember)

[email protected]@gmail.com

Burnstad,Alayna ClinicManager,EdmontonOliverPrimaryCareNetwork

[email protected]

Chan,Catherine AlbertaHealthServicesDONSCN

[email protected]

Chow,Ellis CanadianInstitutesofHealthInformation

[email protected]

Chuck,Andy InstituteofHealthEconomics

[email protected]

Chudnovsky,Katya SeniorEvaluationAnalyst,AlbertaHealthServices

[email protected]

Crick,Katelynn PhDStudent,SchoolofPublicHealth,UniversityofAlberta

[email protected]

Dean,Stafford AlbertaHealthServices [email protected]

Demaere,Elizabeth Director,ClinicalCareImprovement,ChinookPrimaryCare

[email protected]



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Devlin,Nancy Director,OfficeofHealthEconomics,UK

[email protected]

Dover,Doug AlbertaHealth [email protected]

Eamer,Gil MScStudent,SchoolofPublicHealth,UniversityofAlberta

[email protected]

Elnitsky,Sherry TeamLead,ProvincialInjuryPreventionTeam,AlbertaHealthServices

[email protected]

Eurich,Dean Professor,SchoolofPublicHealth,UniversityofAlberta

[email protected]

Godziuk,Kristine PhDStudent,RehabMedicine,UniversityofAlberta

[email protected]

Kemp,Kyle LeadConsultant,ClinicalAnalytics,DIMR

[email protected]

Krajnak,Judith AlbertaHealthServices [email protected]

Leveille,Tova Lead,PrimaryDataSupport,Analytics,AlbertaHealthServices

[email protected]

Makin,Ann BowValleyPCN [email protected],Monica CalgaryRuralPrimaryCare

[email protected]

McClure,Nathan Student,SchoolofPublicHealth,UniversityofAlberta

[email protected]

McCormack,Brandi

Director,ClinicalAnalytics&PrimarySupport,DIMR

[email protected]

Modayil,Mary AlbertaHealthServices [email protected]

Morrison,Charlene ExecutiveDirector,HealthQualityCouncilofAlberta

[email protected]

Mundt,Clark ResearchAssistant,RehabMedicine,UniversityofAlberta

[email protected]

Nguyen,Thanh InstituteofHealthEconomics

[email protected]

Oddie,Scott AlbertaHealthServices [email protected]



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Palfreyman,Simon AssistantProfessor,FacultyofNursing,UniversityofAlberta

[email protected]

Paulden,Mike AssistantProfessor,SchoolofPublicHealth,UniversityofAlberta

[email protected]

Pickard,Simon Professor,UniversityofChicago;ChairofEuroQolExecutiveCommittee

[email protected]

Popeski,Naomi ASD,DONSCN [email protected],Peter Director of Measurement

and Evaluation, Mosaic Primary Care Network, Calgary, AB

[email protected]

Santana,Maria UniversityofCalgaryAssistantResearchProfessor,DepartmentofCommunityHealthSciences,CummingSchoolofMedicine,UniversityofCalgary

[email protected]

Sawatzky,Rick Professor,SchoolofNursing,TrinityWesternUniversity,Langley,BC

[email protected]

Schaub,Jessica EdmontonSouthsidePCN [email protected]

Schick-Makaroff,Kara

AssistantProfessor,FacultyofNursing,UniversityofAlberta

[email protected]

Schmitt-Boshnick,Margo

RedDeerPCN [email protected]

Shpilkerman,Yana Research/EvaluationCoordinator,AlbertaHealthServices

[email protected]

Simon,Roland HealthQualityCouncilofAlberta

[email protected]

Smith,Christopher AlbertaBone&JointHealthInstitute

[email protected]

So,Sylvia SeniorAnalyst,PHC,AppliedResearch&EvaluationServices

[email protected]



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Soos,Boglarka CanadianPrimaryCareSurveillanceNetwork

[email protected]

Svenson,Larry Director,SurveillanceandAssessmentBranch,AlbertaHealth

[email protected]

Tran,Dat MScStudent,SchoolofPublicHealth,UniversityofAlberta

[email protected]

VanderNest,Johan

StrokeRehabilitationLead,NorthZone,AlbertaHealthServices

[email protected]

Vandall-Walker,Virginia

Lead,PatientEngagementPlatform,SPOR

[email protected]

Vanspronsen,Eric Manager,PC&CDM [email protected]



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APPENDICES AppendixI–2ndAnnualAPERSUEnd-UserMeetingProgramAppendixII–APERSUAnnualReport

!

PROGRAM DAY 1! Wednesday, November 9, 2016

7:00!–!8:30!am!! Breakfast!(for!Matrix!Hotel!guests!only)!!

8:00!–!8:30!am! Registration!and!coffee!!

8:30!–!9:00!am! Opening!Remarks!/!Introductions!! Jeff!Johnson!

9:00!–!9:30!am!! Overview!and!Update!on!APERSU! Jeff!Johnson!&!Arto!Ohinmaa!

9:30!–!10:30!am! Keynote!Speaker:!The!Role!of!PatientCreported!Outcome!Measures!in!Routine!Clinical!Care!

Maria!Santana!!

10:30!–!11:00!am! Break:!Coffee!and!Snacks!!

Session: EQ-5D/PROMs in Primary Care in Alberta

Patient!Reported!Outcome!Measures,!Investing!in!Organizational!Success!Supported!by!Evidence!Based!Program!Delivery!!

Peter!Rymkiewicz!!

The!Balance!of!Insight!and!Action!! Ann!Makin!

Edmonton!Oliver!PCN!PROMs!experience! Alayna!Burnstad!

PROMs!in!Primary!Care!Networks:!An!EndCusers’!Perspective!!

Scott!Oddie!

11:00!–!12:30!pm!!

Panel!discussion!! All!participants!!

12:30!–!1:30!pm! Lunch!and!Networking!!

Session: Applications of PROMs in Clinical Practice

Using!PROMs!to!support!informed!patient!decisionCmaking!!

Nick!Bansback!

UserCcentered!design!of!an!electronic!Quality!of!Life!and!Practice!Support!System!(QPSS)!!

Rick!Sawatzky!

Evaluation!of!realCtime!use!of!electronic!patientCreported!outcome!data!by!nurses!with!patients!in!a!home!dialysis!clinic!!

Kara!SchickRMakaroff!

1:30!–!2:50!pm!

Measuring!HRQOL!of!Inpatients!with!COPD! Tova!Leveille!

2:50!–!3:15!pm!! Break:!Coffee!and!Snacks!!

2nd APERSU ANNUAL END-USER MEETING NOVEMBER 9 - 10, 2016 MATRIX HOTEL, EDMONTON AB

NOVEMBER 9 – 10, 2016 MATRIX HOTEL EDMONTON AB CANADA

!

!

Session: Student Presentations

Performance!of!the!EQC5D!anxiety/depression!dimension!in!assessing!mental!health!

Katelynn!Crick!!

3:15!–!3:45!pm!

Estimating!a!minimally!important!difference!of!the!EQC5DC5L!index!score!in!adults!with!type!2!diabetes!

Nathan!McClure!

3:45!–!4:00!pm! Closing!Remarks!for!Day!1!! Jeff!Johnson!!!

DAY 2! Thursday, November 10, 2016

7:00!–!8:30!am!! Breakfast!(for!Matrix!Hotel!guests!only)!!

7:00!–!8:00!am! APERSU!Board!of!Directors!meeting! MEMBERS!ONLY!

8:30!–!9:00!am! Advancing!panCCanadian!standards!in!PROMs!for!routine!care!

Ellis!Chow!

Session: EQ-5D/PROMs and Measurement Issues

Modern!Perspectives!of!Measurement!Validation!Pertaining!to!the!Use!of!PatientCReported!Outcome!Measures!(PROMs)!

Rick!Sawatzky!!

9:00!–!10:00!am!

Minimal!important!difference!(MID)!of!the!EQC5D! Gouke!Bonsel!

10:00!–!10:30!am! Break:!Coffee!and!Snacks!!

10:30!–!12:00!pm!! Workshop: Introduction to Economic Evaluations Mike!Paulden!!

12:00!pm!! Adjournment!/!Closing!Remarks! Jeff!Johnson!

12:00!–!1:00!pm! Lunch!and!Networking!!

1:00!–!4:00!pm! APERSU!Scientific!Advisory!Committee!meeting! MEMBERS!ONLY!!!!

!!!! !

!"#$%&'()*( !"#$%

!APERSU Annual Report 2016

+,-.('&/$'#(01.(/'&/1'&2(1.(1(.3441'5($6(789:;<(1"#-=-#-&.(1>2('&.&1'",(23'->?(#,&(/&'-$2@(!"#$%&'(A*B(CA*D(E(;&/#&4%&'()AB(CA*F(((((((+,&(789:;<(+&14((CGAHA(I-(J1(;,->?(K&>#'&(6$'(L&1M#,(:&.&1'",(N>>$=1#-$>((;",$$M($6(83%M-"(L&1M#,B(<>-=&'.-#5($6(7M%&'#1((924$>#$>B(7OB(+FP(C9*(,##/@QQ1/&'.3R"1Q(((

Alberta PROMs & EQ-5D Research & Support Unit (APERSU), School of Public Health, University of Alberta 2-040 Li Ka Shing Centre for Health Research Innovation, Edmonton, Alberta, Canada T6G 2E1

www.apersu.ca [email protected]!Twitter: @apersu1


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! &'()%!!

(

OUTLINE

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! &'()%;!

Executive Summary – Highlights

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! &'()%@!

!

1. Introduction

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! &'()%F!

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2. APERSU Organizational Structure

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%3. APERSU Operations

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! &'()%Q!

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4. APERSU Support Activities

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5. APERSU Research Activities

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%6. APERSU Year 1 Financial Report

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9MNOP'9H!QRO'ALBERTA PROMS &

EQ-5D RESEARCH &

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•  G."#."$&/.#0/$/"#'0#-*)+",/"(#/*#$)#!(508.29$%0#60')8#/."#Q$)$('$)#0-*,')8#$&8*,'/.2B?#

MINIMALLY IMPORTANT DIFFERENCE (MID) OF THE EQ-5D-5L INDEX SCORE!

Preliminary guidance on the interpretation of EQ-5D-5L index scores

September 2016

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-0.149 0.949 0.0

EQ-5D-5L index score scale using Canadian Scoring Algorithm

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