Developing a recovery and quality of life outcome measure ...

Developingarecoveryandqualityoflifeoutcomemeasureformentalhealthservices

JohnBrazier,AnjuKeetharuth,LizzieTaylorBuck,

JaniceConnell,TomRicketts,JillCarltonandMichaelBarkham

SchoolofHealthandRelatedResearch

Contact:[email protected]

Website:www.reqol.org.uk

©THEUNIVERSITYOFSHEFFIELD

WhywasReQoLdeveloped?NohealthwithoutmentalhealthandClosingtheGaphighlighttheimportanceofmeasuringrecoveryfromserviceusers’perspectives

Attheheartofrecoveryisaperson’srighttobuildameaningfullifewithorwithoutsymptoms

Therearethreemainprinciplesunderlyingtherecoveryphilosophy:hope;agencyorcontrol;opportunity(Shepherdetal.,2008)


WhywasReQoLdeveloped?Measurestraditionallyusedinmentalhealthservices:◦ Focusonsymptoms(e.g.PHQ-9)◦ Focusonclinicianassessment(e.g.HoNOS)◦ Werenotdevelopedformentalhealthservicesandsoaretoogeneric(e.g.EQ-5DandsWEMWBS)

◦ Failtocapturethewidespectrumofmentalhealthconditionsandseverity(Boardmanetal,2013)


WeneedanewmeasureAnewmeasureisneededthat:◦ Focusesonrecoveryandqualityoflife◦ Isnotexclusivelyfocusedonwellbeing,butincorporatesbothpositiveand

negativeaspects◦ Hasbeendevelopedwithmentalhealthserviceuserstofocusonissues

thatarerelevantandimportanttothem


CapturingwhatmatterstoserviceusersAmeasureisneededtocapturestheconcernsofserviceusers,suchasthoseidentifiedbyLeamy etal(CHIME):◦ Connectedness◦ Hope◦ Identity◦ MeaningandPurpose◦ Empowerment


ReQoLisaPatientReportedoutcomemeasures(PROM)

Clinicianratesoutcome(CROM)

Therearedifferentwaysofmeasuringoutcomes:

ReQoLisaPROM


AimsofReQoLTodevelopabriefmeasureofrecoveryandqualityoflifeforusersofmentalhealthservicestocompletethemselves

Toworkcollaborativelywithserviceusersandclinicianstoproduceameasurethatcapturesissuesthatareimportanttothem


StagesofReQoLdevelopment1.Identifythemes

2.Generateitems

3.Gather serviceuser’sviews

4.Gather clinician’sviews

5.Psychometric fieldtesting


ServiceuserinvolvementServiceuserswereintegraltotheresearchprocessasmembersofsteeringandadvisorygroups,researchersandparticipants.Theresearchincluded:◦ Interviewswithserviceuserstoidentifythethemes◦ Over80furtherinterviewstoestablishfaceandcontentvalidityoftheitems◦ Fieldtestingwith6494serviceusers


ThemesidentifiedinStage1Thefirststageoftheresearchidentifiedseventhemes:

Autonomy,Control,Choice

SelfPerception

ActivityHope

Relationships,Belonging

Physicalhealth

Well-Being


ThethemesidentifiedinStage1mapontoCHIMEDomainsofmentalhealthrelated qualityoflifefromConnell etal.

Recovery frameworkfromsystematicreviewandnarrativesynthesis byLeamy etal.

Belonging/Relationships Connectedness/support/stigmaanddiscrimination/communityparticipation

Hope HopeSelfperception Identity

Activity(meaningful/enjoyable) MeaningAutonomy/Choice/Control EmpowermentWell-BeingPhysicalHealth


Stage2Oncethethemeshadbeenidentifieditemsweregeneratedforthesethemes

1597items wereidentifiedfromrelevantexistingmeasuresandtranscriptsfromserviceuserinterviews

Serviceusersandclinicianshelpedselectthemostappropriateitemstogothroughtothenextstage


Stages3&4Serviceuserswereinterviewedindividuallyoringroupstoestablishthefacevalidityandcontentvalidityofpotentialitems

Focusgroupswerealsoheldwithclinicianstogettheirfeedbackonpotentialitems


Stage5Tworoundsoffieldtestingtookplacetoreducethenumberofitemsusingpsychometricanalysis

Thefirstroundinvolved2261serviceusersinsecondarycare,primarycareandvoluntarysector

Forthesecondround,4253serviceuserswererecruited

Theanalysislookedfor:missingdata;highresidualcorrelations;misfittingitems;coverageofmeasurementrange;differentialfunctioning;sensitivitytochange


PrinciplesinformingitemselectionAllsixmentalhealthdomainsidentifiedinStage1oftheprojectarerepresentedinthefinaltwoversionsofReQoL.

Serviceuseracceptabilityandclinicianacceptabilityandusefulness

Acceptablepsychometricproperties


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


StrengthsofReQoLDevelopedcollaborativelywithserviceusersandclinicians

Consistentwiththethemesofrecovery

Suitableforroutineuse

Robustmethodology


DevelopedwithserviceusersandcliniciansReQoLwasdevelopedwithserviceusersandcliniciansasadvisors,researchersandparticipants

Serviceusersandclinicianswereinvolvedinthedecision-makingstagesofthedevelopmentprocess

ReQoLhashighfaceandcontentvaliditywithcliniciansandserviceusers

Serviceusersfromethnicminoritypopulationswereincludedintheresearch(SouthAsianandPolish)


ConsistentwiththethemesofRecoveryMeetsthegapidentifiedbyBoardmanetal(2011)

Measureswhatmatterstoserviceusers

MapstoCHIME


CanbeusedasatherapeutictoolCanbeusedatmultipletimepointstobuildapictureortellastoryaboutrecovery

Canbeusedtosupportformulation,careplanninganddischarge

Canbeusedtoinformconversationsbetweencliniciansandserviceusers

Canbeusedtoguideandfocusthesessions


SuitableforroutineuseSuitableforadultsaged16andoverwitharangeofmentalhealthconditionsfrommildtoverysevere

Simple,quick andfreetouse

Electronicandpaperversions

Easytocalculatethescore

Easytointerpretscore– visualisationofresultswithandwithoutnormswillsoonbeavailable


RobustMethodologyReQoLhasbeendevelopedusingmodernandclassicalpsychometrics

InitialvalidationshowsthatReQoLisresponsive,internallyconsistentandavalidmeasure


Developing a recovery and quality of life outcome measure ...

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