Seeding the value based health care and standardised measurement of quality of life after burn debate

(1)

Letter

to

the

Editor

Seeding

the

value

based

health

care

and

standardised

measurement

of

quality

of

life

after

burn

debate

DearEditor,

Asexperiencedcliniciansandresearchersinburncare,weare

impressedandenergisedbythecontinuedprogresstowards

OneWorld,OneStandardofBurnCareasinitiallypromulgated

byDrDavidMackie,PastPresidentoftheISBIandreinforcedat

ISBIinNewDelhi(2018).Sadly,weareunabletocontinuethe

discussionatburnclinicianmeetingsin2020duetotheimpact

oftheCOVID-19pandemic.That said,weacknowledgeand

applaudtheongoingprogressincriticalcare,infectioncontrol,

nutritional support and continued innovations in surgery,

dressing systems, reconstructive biotechnology and tissue

regeneration.Mortalitypost-burnandthepathological

frame-workofrecoveryis consequentlyand appropriately fading

from the literature as preferred, contemporary outcome

measures[1].

Theglobalmovementforvaluebased,patient-centredcare

isalsoprogressing rapidlyandperhapswiththeoverlayof

COVID-19, the world will take stock and consider what

constitutesapositiveoutcomeafterasignificanthealthevent.

So,whatisthenextevolutionarysteptowardspatient-centric

measurementofrecoveryafteraburn?Theobviousanswer,

forour unique patient population, may be to measurescar

outcomesandthematurationand,oreliminationofphysical

scarring.Thatisanobleandworthwhilepursuitacceptedbya

numberofgroupsaroundtheworld[2,3].Thatsaid,isthiswhat

patients truly care about and value the most? Without

exception,everyburnclinicianhasapatientwhomtheycan

identify,irrespective ofmajor scarring,has movedon and

rebuilttheirlivesorestablishedanewmeaningforlivingand,

orstandsasaninspirationtofuturepatients.

Perhapsthen,shouldwerefocusoureffortsonmeasuring

theimpactofscarringofthemindonrecoveryofqualityoflife

(QoL)?Nomatterhowfinethequalityofpost-burnscarisor

how quickly skin repair occurs or when regeneration of

woundedskintonormalappearanceisareality,nothingcan

unseenthesightsorreversetheexperienceofthesensations

ofburnrecovery.

Whatismeaningful topatientsistherestoration ofQoL,

whatever that means to an individual. The World Health

Organisation(WHO)defines thisconcept as “anindividual's

perceptionoftheirpositioninlifeinthecontextofthecultureand

value systems in whichthey live, and inrelation totheir goals,

expectations,standards,andconcerns”[4].Wetherefore,purport

that patient-reported outcome measures (PROMs), which

quantifytheindividual'sperceptionofaspectsoftheirQoL;

and,patient-reportedexperiencemeasures(PREMs)are

inte-gral to collaborative care focussing on optimal, holistic

outcomes. Further, repeated, real-time capture of surveys

representthepatientvoiceaboutaspectsofhealththatare

directly assessedbyapatientwithouttheinterpretation or

biasfromanyoneelse[5].Thesesurveysprovideuswithan

important view of an individual's health across multiple

domains whichgobeyondanypathophysiologicalmeasure

and there is substantial literature validating PROMs in

particular,foruseafterburninjuries[6,7].

Wethereforesuggestthat,measuringanddefining

recov-eryofQoLforourpatientsisthenextfrontiertoconquerin

outcome measurement after burns. Yet, many clinicians

strugglewiththeconceptofassessingthismultidimensional

outcomeinabiopsychosocialconstruct;facepitfallsinusing

QoLmeasures;and,donotknowwheretostartinsettingup

systematicmeasurementorinterpretationofthesame.Ina

recentreviewonQoLafterburninjuries,itwashighlighted

thatconsensusandaguidelineonthemeasurementofQoLin

burnpatientsmightovercometheseissues[8].

Thus,MrEditorwewishtoinvitecommentonwhatweseeas

thesimplest,bestpracticegoalforallmultidisciplinaryteams

inmeasuringQoLrecoveryafterburns.Firstandforemost,we

purportthatsystematicmeasurementiskeyinmonitoringthe

broadvariabilityofresponsesthatmaybeareflectionofthe

patient's experiences of the care they receive and the

outcomes,bothshortandlongterm.Thus,westronglysuggest

teamspilotastandardisedscheduleof4-6weeks,3months,6

months, 12 months and 24 months afterburn injury date

which is in accordance with the most frequently used

assessmenttimepoints[8].

Secondly,weinviteadebateonwhatshouldbetheonesurvey

tobeusedfrom2020forsystematicQoLbenchmarkinginadult

burnsurvivors,worldwide.Notwithstanding,theavailability

burns xxx (2020) xxx xxx

JBUR6148No.ofPages3

Pleasecitethisarticleinpressas:D.W.Edgar,etal.,Seedingthevaluebasedhealthcareandstandardisedmeasurementofqualityof

lifeafterburndebate,Burns(2020),https://doi.org/10.1016/j.burns.2020.05.024

Available

online

at

www.sciencedirect.com

ScienceDirect

(2)

ofcomputerisedadaptivetesting,theinstrumentsestablished

andemerginginclude:

(a) MedicalOutcomeStudyShortForm 36item(SF-36)[9]for

genericQoLmeasurementinadultburnpatients.The

SF-36isawidelyappliedinstrumentandthemostoftenused

genericinstrumenttoassessQoLinburns[8,10],itis

validatedforuseintheadultburnpatientpopulation[11],

anditcoversmanydomainsthatarealsocoveredbythe

mostappliedburnspecificQoLmeasure[12].Toreduce

patientburden,theshortened,item-subsetversion(SF-12

v.2Optum)ortherewordeditemsoftheSF-8maybeused,

thoughthelatterisnotspecificallyvalidatedintheburn

populationonaccountoftherewordeditems.Onemajor

disadvantageisthelicensefeepayabletouseandaccess

thealgorithmtointerpretthesurveyresponses.

(b) BurnSpecificHealthScale Brief(BSHS-B)[13]isoneofthe

mostcommonlyappliedburnspecificQoLmeasurement.

Despiteitswidespreaduse,thereisdiscussionaboutthis

instrumentasitlacksaclearguideforscoring/calculation/

algorithm);islesssensitivethanSF-36fromonemonth

postburn[11],andthereisnoevidenceontest-retest

reliability,validityanditem-totalcorrelationsofthe

BSHS-B[7].

(c) 5-dimensionalEuroQolinstrument(EQ-5D)[14]isoneof

themostwidelyusedgenericQoLinstruments.Withonly

fiveitems,lowpatientburdenisonekeyadvantageofits

use.TheEQ-5Dhasestablishedpsychometricproperties

forburnpatientsandisthereforeproposedtouseinburn

recoverystudies[15]andhasmultiplecultural

trans-lations.Disadvantagesincludethelimitednumberof

itemsandpoorerdescriptivecapabilityofQoLcomparedto

othergenericinstruments;asaconsequence,itsuffers

fromceilingeffects.

(d) VeteransRAND 36item(VR-36)isagenericQoL

instrumentthatissimilartotheSF36withsome

modificationsofresponsechoicesenhancingreliability

andvaliditycomparedtotheformer.Thereistheshort

formversionorVR-12thatiswellestablished.TheVR-12

haskeyadaptationswhichincreaseprecisionandvalidity

comparedtotheSF36andSF-12version1.0.TheVR-6Disa

utilitymetricderivedfromthe12itemsoftheVR-12and

alsopreviouslyvalidated.TheVR-36,VR-12andVR-6Dare

availablefreetoreaderstogetherwithdocumentationand

scoringalgorithmsuponregistrationwiththeauthors

(withtheexceptionofanadministrationfeeappliedto

for-profitorganisations).Thesurveyhasmultiplelanguage/

culturaltranslations,thoughlessthantheSF36[16].

(e) TheLifeImpactBurnRecoveryEvaluation(LIBREProfile)isa

ComputerAdaptiveTestdevelopedtoassessthesocial

integrationofburnsurvivorsinthecommunity.The

recentlyestablishedassessmenthasbeenvalidatedfor

reliabilityandvalidity[17].Benchmarksalsohavebeen

advancedforinterpretationofscores.Theassessmentis

nowundergoingtranslationsofthefixedshortformversion

inSpanish,Australian,ChineseandJapanese.The

assess-mentisavailablefromtheseniorauthorsonrequest.

Asourfinalword,we dovalueand encouragechoosing

additionallocallyapplicablemeasures,butwesuggestthatif

all burn facilities around the world were to commit to

collectingthesamesingleQoLsurveyatleast4-6weeksand

3 months after burns, we can begin to benchmark across

cultures and jurisdictions. With a common, contemporary

measure,burnclinicianscouldcommunicatemoreeffectively

about patient outcomes and support colleagues, in any

environment of operation, with a focus on education and

trainingforimprovementandprogresstowardsOneWorld,

OneStandardofBurnCare.

Conflict

of

interest

statement

Therearenoconflictsofinteresttobereportedforanyauthors

withtheexceptionofProfLewisKazis.Co-authorKaziswas

involvedintheoriginaldevelopmentoftheVR-36/12/6Dand

LIBREProfilesurveyinstruments.Theseinstrumentsaregratis

for non-profit users withacknowledgement and thus, Prof

Kazis does not have any direct financial gain through

promotingtheseinstruments.

REFERENCES

[1]BrownT,MillsS,MullerM.Ifitcan’tbemeasureditcan’tbe managed.Thepaucityofoutcomemeasuresinburncare. Burns2003;29(8):757.

[2]vanZuijlenPP,MokkinkLB,HoogewerfCJ,deVetHC.The officialupdateofthePOSAS:aninvitationtoshare experiencestoimprovethePOSASin‘ProjectPOSAS3.0’. Burns2017;43(4):893.

[3]TyackZ,ZivianiJ,KimbleR,PlazaA,JonesA,CuttleL,etal. Measuringtheimpactofburnscarringonhealth-related qualityoflife:developmentandpreliminarycontent validationoftheBrisbaneBurnScarImpactProfile(BBSIP)for childrenandadults.Burns2015;41(7):1405 19.

[4]WHOQOLGroup.TheWorldHealthOrganizationqualityoflife assessment(WHOQOL):positionpaperfromtheWorldHealth Organization.SocSciMed1995;41(10):1403 9.

[5]USDepartmentofHealthHumanServicesFDACenterforDrug Evaluation.Guidanceforindustry:patient-reportedoutcome measures:useinmedicalproductdevelopmenttosupport labelingclaims: draftguidance.QualLifeOutcomes2006;4:1 20.

[6]GriffithsC,Armstrong-JamesL,WhiteP,RumseyN,PleatJ, HarcourtD.Asystematicreviewofpatientreportedoutcome measures(PROMs)usedinchildandadolescentburnresearch. Burns2015;41(2):212 24.

[7]GriffithsC,GuestE,WhiteP,GaskinE,RumseyN,PleatJ,etal.A systematicreviewofpatient-reportedoutcomemeasuresused inadultburnresearch.JBurnCareRes2017;38(2):e521 45.

[8]SpronkI,LegemateC,OenI,vanLoeyNE,PolinderS,vanBaar ME.Healthrelatedqualityoflifeinadultsafterburninjuries:a systematicreview.PLOSONE2018;13(5):e0197507.

[9]WareJr.JE,SherbourneCD.TheMOS36-itemshort-form healthsurvey(SF-36):I.Conceptualframeworkanditem selection.MedCare1992;473 83.

[10]MeirteJ,VanLoeyNEE,MaertensK,MoortgatP,HubensG,Van DaeleU.Classificationofqualityoflifesubscaleswithinthe ICFframeworkinburnresearch:identifyingoverlapsand gaps.Burns2014;40(7):1353 9.

[11]EdgarD,DawsonA,HankeyG,PhillipsM,WoodF.

DemonstrationofthevalidityoftheSF-36formeasurementof thetemporalrecoveryofqualityoflifeoutcomesinburns survivors.Burns2010;36(7):1013 20.

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[12]CoonsSJ,RaoS,KeiningerDL,HaysRD.Acomparativereview ofgenericquality-of-lifeinstruments.Pharmacoeconomics 2000;17(1):13 35.

[13]MeirteJ,VanDaeleU,MaertensK,MoortgatP,DeleusR,Van LoeyNE.Convergentanddiscriminantvalidityofqualityoflife measuresusedinburnpopulations.Burns2017;43(1):84 92.

[14]BrooksR.EuroQol:thecurrentstateofplay.HealthPolicy 1996;37(1):53 72.

[15]ÖsterC,WillebrandM,Dyster-AasJ,KildalM,EkseliusL. ValidationoftheEQ-5Dquestionnaireinburninjuredadults. Burns2009;35(5):723 32.

[16]KazisLE,SelimA,QianS,RothendlerJ.AbouttheVR-36/VR12 andVR-6D..2020Availablefrom:https://www.bu.edu/sph/ about/departments/health-law-policy-and-management/ research/vr-36-vr-12-and-vr-6d/[accessed05.15.20].

[17]DoreEC,MarinoM,NiP,Lomelin-GasconJ,SonisL,AmayaF, etal.Reliability&validityoftheLIBREProfile.Burns2018;44 (7):1750 8.

D.W.Edgara,b,c,*

a_State_Adult_Burn_Unit,_Fiona_Stanley_Hospital,_Murdoch,_Australia

b_Burn_Injury_Research_Node,_The_Institute_for_Health_Research,_The

UniversityofNotreDameAustralia,Fremantle,Australia

c

FionaWoodFoundation,FionaStanleyHospital,Murdoch,Australia

U.VanDaelea,b

a_Department_of_{Rehabilitation}_Sciences_and_{Physiotherapy}

(REVAKI-MOVANT),FacultyofMedicineandHealthSciences,Universityof

Antwerp,Antwerp,Belgium

b_Oscare,_Organisation_for_Burns,_Scar_After-Care_and_Research,

Antwerp,Belgium

I.Spronka,b

M.vanBaara,b

a_Association_of_Dutch_Burn_Centres,_Maasstad_Hospital,_Rotterdam,

TheNetherlands

b_Erasmus_MC,_University_Medical_Center_Rotterdam,_Department_of

PublicHealth,Rotterdam,TheNetherlands

N.vanLoeya,b

a

AssociationofDutchBurnCentres,DepartmentPsychologicaland

NursingResearch,Beverwijk,TheNetherlands

b_Utrecht_University,_Department_of_Clinical_Psychology,_Utrecht,_The

Netherlands

F.M.Wooda,b,c

a_Fiona_Wood_Foundation,_Fiona_Stanley_Hospital,_Murdoch,

Australia

b_Burn_Service_of_Western_Australia,_Fiona_Stanley_Hospital_and_Perth

Children'sHospital,Perth,Australia

c_Burn_Injury_Research_Unit,_University_of_Western_Australia,

Crawley,Australia

L.B.Kazisa

a

HealthOutcomesUnitandCenterfortheAssessmentof

PharmaceuticalPractices(CAPP),DepartmentofHealthLaw,Policy

andManagement;BostonUniversitySchoolofPublicHealth,Boston,

Massachusetts

J.Meirtea,b

a_Oscare,_Organisation_for_Burns,_Scar_After-Care_and_Research,

Antwerp,Belgium

b_Department_of_{Rehabilitation}_Sciences_and_{Physiotherapy}

(REVAKI-MOVANT),FacultyofMedicineandHealthSciences,Universityof

Antwerp,Antwerp,Belgium

* Correspondingauthorat:StateAdultBurnUnit,FionaStanley

Hospital,Murdoch,Australia.

E-mailaddress:dale.edgar@health.wa.gov.au(D.Edgar).

Availableonlinexxx

http://dx.doi.org/10.1016/j.burns.2020.05.024

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