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Developingarecoveryandqualityoflifeoutcomemeasureformentalhealthservices
JohnBrazier,AnjuKeetharuth,LizzieTaylorBuck,
JaniceConnell,TomRicketts,JillCarltonandMichaelBarkham
SchoolofHealthandRelatedResearch
Contact:[email protected]
Website:www.reqol.org.uk
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WhywasReQoLdeveloped?NohealthwithoutmentalhealthandClosingtheGaphighlighttheimportanceofmeasuringrecoveryfromserviceusers’perspectives
Attheheartofrecoveryisaperson’srighttobuildameaningfullifewithorwithoutsymptoms
Therearethreemainprinciplesunderlyingtherecoveryphilosophy:hope;agencyorcontrol;opportunity(Shepherdetal.,2008)
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WhywasReQoLdeveloped?Measurestraditionallyusedinmentalhealthservices:◦ Focusonsymptoms(e.g.PHQ-9)◦ Focusonclinicianassessment(e.g.HoNOS)◦ Werenotdevelopedformentalhealthservicesandsoaretoogeneric(e.g.EQ-5DandsWEMWBS)
◦ Failtocapturethewidespectrumofmentalhealthconditionsandseverity(Boardmanetal,2013)
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WeneedanewmeasureAnewmeasureisneededthat:◦ Focusesonrecoveryandqualityoflife◦ Isnotexclusivelyfocusedonwellbeing,butincorporatesbothpositiveand
negativeaspects◦ Hasbeendevelopedwithmentalhealthserviceuserstofocusonissues
thatarerelevantandimportanttothem
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CapturingwhatmatterstoserviceusersAmeasureisneededtocapturestheconcernsofserviceusers,suchasthoseidentifiedbyLeamy etal(CHIME):◦ Connectedness◦ Hope◦ Identity◦ MeaningandPurpose◦ Empowerment
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ReQoLisaPatientReportedoutcomemeasures(PROM)
Clinicianratesoutcome(CROM)
Therearedifferentwaysofmeasuringoutcomes:
ReQoLisaPROM
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AimsofReQoLTodevelopabriefmeasureofrecoveryandqualityoflifeforusersofmentalhealthservicestocompletethemselves
Toworkcollaborativelywithserviceusersandclinicianstoproduceameasurethatcapturesissuesthatareimportanttothem
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StagesofReQoLdevelopment1.Identifythemes
2.Generateitems
3.Gather serviceuser’sviews
4.Gather clinician’sviews
5.Psychometric fieldtesting
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ServiceuserinvolvementServiceuserswereintegraltotheresearchprocessasmembersofsteeringandadvisorygroups,researchersandparticipants.Theresearchincluded:◦ Interviewswithserviceuserstoidentifythethemes◦ Over80furtherinterviewstoestablishfaceandcontentvalidityoftheitems◦ Fieldtestingwith6494serviceusers
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ThemesidentifiedinStage1Thefirststageoftheresearchidentifiedseventhemes:
Autonomy,Control,Choice
SelfPerception
ActivityHope
Relationships,Belonging
Physicalhealth
Well-Being
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ThethemesidentifiedinStage1mapontoCHIMEDomainsofmentalhealthrelated qualityoflifefromConnell etal.
Recovery frameworkfromsystematicreviewandnarrativesynthesis byLeamy etal.
Belonging/Relationships Connectedness/support/stigmaanddiscrimination/communityparticipation
Hope HopeSelfperception Identity
Activity(meaningful/enjoyable) MeaningAutonomy/Choice/Control EmpowermentWell-BeingPhysicalHealth
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Stage2Oncethethemeshadbeenidentifieditemsweregeneratedforthesethemes
1597items wereidentifiedfromrelevantexistingmeasuresandtranscriptsfromserviceuserinterviews
Serviceusersandclinicianshelpedselectthemostappropriateitemstogothroughtothenextstage
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Stages3&4Serviceuserswereinterviewedindividuallyoringroupstoestablishthefacevalidityandcontentvalidityofpotentialitems
Focusgroupswerealsoheldwithclinicianstogettheirfeedbackonpotentialitems
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Stage5Tworoundsoffieldtestingtookplacetoreducethenumberofitemsusingpsychometricanalysis
Thefirstroundinvolved2261serviceusersinsecondarycare,primarycareandvoluntarysector
Forthesecondround,4253serviceuserswererecruited
Theanalysislookedfor:missingdata;highresidualcorrelations;misfittingitems;coverageofmeasurementrange;differentialfunctioning;sensitivitytochange
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PrinciplesinformingitemselectionAllsixmentalhealthdomainsidentifiedinStage1oftheprojectarerepresentedinthefinaltwoversionsofReQoL.
Serviceuseracceptabilityandclinicianacceptabilityandusefulness
Acceptablepsychometricproperties
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1. I felt unable to cope2. I felt hopeful about my future3. I found it difficult to get started with everyday tasks4. I felt happy 5. I thought my life was not worth living6. I felt lonely7. I enjoyed what I did8. I could do the things I wanted to do9. I felt able to trust others10. I felt confident in myself
11. I did things I found rewarding12. I avoided things I needed to do13. I felt irritated 14. I felt like a failure15. I felt in control of my life16. I felt terrified17. I felt anxious18. I had problems with my sleep19. I felt calm20. I found it hard to concentrate
ReQoL-20
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StrengthsofReQoLDevelopedcollaborativelywithserviceusersandclinicians
Consistentwiththethemesofrecovery
Suitableforroutineuse
Robustmethodology
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DevelopedwithserviceusersandcliniciansReQoLwasdevelopedwithserviceusersandcliniciansasadvisors,researchersandparticipants
Serviceusersandclinicianswereinvolvedinthedecision-makingstagesofthedevelopmentprocess
ReQoLhashighfaceandcontentvaliditywithcliniciansandserviceusers
Serviceusersfromethnicminoritypopulationswereincludedintheresearch(SouthAsianandPolish)
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ConsistentwiththethemesofRecoveryMeetsthegapidentifiedbyBoardmanetal(2011)
Measureswhatmatterstoserviceusers
MapstoCHIME
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CanbeusedasatherapeutictoolCanbeusedatmultipletimepointstobuildapictureortellastoryaboutrecovery
Canbeusedtosupportformulation,careplanninganddischarge
Canbeusedtoinformconversationsbetweencliniciansandserviceusers
Canbeusedtoguideandfocusthesessions
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SuitableforroutineuseSuitableforadultsaged16andoverwitharangeofmentalhealthconditionsfrommildtoverysevere
Simple,quick andfreetouse
Electronicandpaperversions
Easytocalculatethescore
Easytointerpretscore– visualisationofresultswithandwithoutnormswillsoonbeavailable
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