Edgar, D. W.

Kazis, L. B.

Meirte, J.

Spronk, I.

van Baar, M.

Van Daele, U.

van Loey, N.E.E.

Wood, F. M.

Utrecht University Repository

Letter to the EditorSeeding the value based health care andstandardised measurement of quality oflife after burn debateDear Editor,As experienced clinicians and researchers in burn care, we areimpressed and energised by the continued progress towardsOneWorld,OneStandardof BurnCareas initiallypromulgatedbyDrDavidMackie, Past President of the ISBI and reinforced atISBI in New Delhi (2018). Sadly, we are unable to continue thediscussionat burn clinicianmeetings in 2020due to the impactof the COVID-19 pandemic. That said, we acknowledge andapplaud theongoingprogress in critical care, infection control,nutritional support and continued innovations in surgery,dressing systems, reconstructive biotechnology and tissueregeneration. Mortality post-burn and the pathological frame-work of recovery is consequently and appropriately fadingfrom the literature as preferred, contemporary outcomemeasures [1].The globalmovement for value based, patient-centred careis also progressing rapidly and perhaps with the overlay ofCOVID-19, the world will take stock and consider whatconstitutes a positive outcome after a significant health event.So, what is the next evolutionary step towards patient-centricmeasurement of recovery after a burn? The obvious answer,for our unique patient population, may be to measure scaroutcomes and the maturation and, or elimination of physicalscarring. That is a noble andworthwhile pursuit accepted by anumberof groupsaround theworld [2,3]. That said, is thiswhatpatients truly care about and value the most? Withoutexception, every burn clinician has a patient whom they canidentify, irrespective of major scarring, has moved on andrebuilt their lives or established a newmeaning for living and,or stands as an inspiration to future patients.Perhaps then, should we refocus our efforts on measuringthe impact of scarring of themind on recovery of quality of life(QoL)? No matter how fine the quality of post-burn scar is orhow quickly skin repair occurs or when regeneration ofwounded skin to normal appearance is a reality, nothing canunseen the sights or reverse the experience of the sensationsof burn recovery.What is meaningful to patients is the restoration of QoL,whatever that means to an individual. The World HealthOrganisation (WHO) defines this concept as “an individual'sperception of their position in life in the context of the culture andvalue systems in which they live, and in relation to their goals,expectations, standards, and [53_TD$DIFF]concerns” [4]. We therefore, purportthat patient-reported outcome measures (PROMs), whichquantify the individual's perception of aspects of their QoL;and, patient-reported experience measures (PREMs) are inte-gral to collaborative care focussing on optimal, holisticoutcomes. Further, repeated, real-time capture of surveysrepresent the patient voice about aspects of health that aredirectly assessed by a patient without the interpretation orbias from anyone else [5]. These surveys provide us with animportant view of an individual's health across multipledomains which go beyond any pathophysiological measureand there is substantial literature validating PROMs inparticular, for use after burn injuries [6,7].We therefore suggest that, measuring and defining recov-ery of QoL for our patients is the next frontier to conquer inoutcome measurement after burns. Yet, many cliniciansstruggle with the concept of assessing this multidimensionaloutcome in a biopsychosocial construct; face pitfalls in usingQoL measures; and, do not know where to start in setting upsystematic measurement or interpretation of the same. In arecent review on QoL after burn injuries, it was highlightedthat consensus and a guideline on themeasurement of QoL inburn patients might overcome these issues [8].Thus,Mr Editorwewish to invite comment onwhatwe see asthe simplest, best practice goal for all multidisciplinary teamsinmeasuring QoL recovery after burns. First and foremost, wepurport that systematicmeasurement is key inmonitoring thebroad variability of responses that may be a reflection of thepatient's experiences of the care they receive and theoutcomes, both short and long term.Thus,we strongly suggestteams pilot a standardised schedule of [54_TD$DIFF] -6 weeks, 3 months, 6months, 12 months and 24 months after burn injury datewhich is in accordance with the most frequently usedassessment time points [8].Secondly,we invite a debateonwhat should be the one surveytobeused from2020 for systematicQoLbenchmarking inadultburn survivors, worldwide. Notwithstanding, the availabilityof computerised adaptive testing, the instruments establishedand emerging include:(a) Medical OutcomeStudyShort Form 36 item (SF-36) [9] forgeneric QoL measurement in adult burn patients. The SF-36 is a widely applied instrument and the most often usedgeneric instrument to assess QoL in burns [8,10], it isvalidated for use in the adult burn patient population [11],and it covers many domains that are also covered by themost applied burn specific QoL measure [12]. To reducepatient burden, the shortened, item-subset version (SF-12 [55_TD$DIFF]v.2 Optum) or the reworded items of the SF-8may be used,though the latter is not specifically validated in the burnpopulation on account of the reworded items. One majordisadvantage is the license fee payable to use and accessthe algorithm to interpret the survey responses.(b) BurnSpecificHealth ScaleBrief (BSHS-B) [13] is oneof themost commonly applied burn specific QoL measurement.b u r n s 4 6 ( 2 0 2 0 ) 1 7 0 7 1 7 2 8 1721Despite its widespread use, there is discussion about thisinstrument as it lacks a clear guide for scoring/calculation/algorithm); is less sensitive than SF-36 from one monthpost burn [11], and there is no evidence on test-retestreliability, validity and item-total correlations of the BSHS-B [7].(c) 5-dimensional EuroQol instrument (EQ-5D) [14] is one ofthe most widely used generic QoL instruments. With onlyfive items, low patient burden is one key advantage of itsuse. The EQ-5D has established psychometric propertiesfor burn patients and is therefore proposed to use in burnrecovery studies [15] and has multiple cultural trans-lations. Disadvantages include the limited number ofitemsandpoorer descriptive capability ofQoL compared toother generic instruments; as a consequence, it suffersfrom ceiling effects.(d) Veterans RAND  36 item (VR-36) is a generic QoLinstrument that is similar to the SF36 with somemodifications of response choices enhancing reliabilityand validity compared to the former. There is the shortform version or VR-12 that is well established. The VR-12has key adaptations which increase precision andvalidity compared to the SF36 and SF-12 version 1.0. TheVR-6D is a utility metric derived from the 12 items of theVR-12 and also previously validated. The VR-36, VR-12and VR-6D are available free to readers together withdocumentation and scoring algorithms upon registrationwith the authors [56_TD$DIFF](with the exception of an administrationfee applied to for-profit organisations). The survey hasmultiple language/cultural translations, though less thanthe SF36 [16].(e) TheLife ImpactBurnRecoveryEvaluation (LIBREProfile) is aComputer Adaptive Test developed to assess the socialintegration of burn survivors in the community. Therecently established assessment has been validated forreliability and validity [17]. Benchmarks also have beenadvanced for interpretation of scores. The assessment isnowundergoing translationsof the fixedshort formversionin Spanish, Australian, Chinese and Japanese. The assess-ment is available from the senior authors on request.As our final word, we do value and encourage choosingadditional locally applicable measures, but we suggest that ifall burn facilities around the world were to commit tocollecting the same single QoL survey at least [54_TD$DIFF] -6 weeks and3 months after burns, we can begin to benchmark acrosscultures and jurisdictions. With a common, contemporarymeasure, burn clinicians could communicatemore effectivelyabout patient outcomes and support colleagues, in anyenvironment of operation, with a focus on education andtraining for improvement and progress towards One World,One Standard of Burn Care.Conflict of interest statementThere are no conflicts of interest to be reported for any authorswith the exception of Prof Lewis [57_TD$DIFF]Kazis. Co-author Kazis wasinvolved in the original development of the VR-36/12/6D andLIBREProfile survey instruments. These instruments are gratisfor non-profit users with acknowledgement and thus, ProfKazis does not have any direct financial gain throughpromoting these instruments.R E F E R E N C E S[1] Brown T, Mills S, Muller M. If it can’t be measured it can’t bemanaged. The paucity of outcome measures in burn care.Burns 2003;29(8):757.[2] van Zuijlen PP, Mokkink LB, Hoogewerf CJ, de Vet HC. Theofficial update of the POSAS: an invitation to shareexperiences to improve the POSAS in ‘Project POSAS 3.0’.Burns 2017;43(4):893.[3] Tyack Z, Ziviani J, Kimble R, Plaza A, Jones A, Cuttle L, et al.Measuring the impact of burn scarring on health-relatedquality of life: development and preliminary contentvalidation of the Brisbane Burn Scar Impact Profile (BBSIP) forchildren and adults. Burns 2015;41(7):140519.[4] WHOQOLGroup.TheWorldHealthOrganizationqualityof lifeassessment (WHOQOL): position paper from theWorldHealthOrganization. Soc Sci Med 1995;41(10):14039.[5] US Department of Health Human Services FDA Center for DrugEvaluation. Guidance for industry: patient-reported outcomemeasures: use in medical product development to supportlabelingclaims:draftguidance.QualLifeOutcomes2006;4:120.[6] Griffiths C, Armstrong-James L, White P, Rumsey N, Pleat J,Harcourt D. A systematic review of patient reported outcomemeasures (PROMs)used inchild andadolescentburn research.Burns 2015;41(2):21224.[7] GriffithsC, Guest E,White P, Gaskin E, RumseyN, Pleat J, et al. Asystematic reviewof patient-reported outcomemeasures usedin adult burn research. J Burn Care Res 2017;38(2):e52145.[8] Spronk I, Legemate C, Oen I, van Loey NE, Polinder S, van BaarME. Health related quality of life in adults after burn injuries: asystematic review. PLOS ONE 2018;13(5):e0197507.[9] Ware Jr. JE, Sherbourne CD. The MOS 36-item short-formhealth survey (SF-36): I. Conceptual framework and itemselection. Med Care 1992;47383.[10] Meirte J, Van LoeyNEE,MaertensK,Moortgat P, HubensG, VanDaele U. Classification of quality of life subscales within theICF framework in burn research: identifying overlaps andgaps. Burns 2014;40(7):13539.[11] Edgar D, Dawson A, Hankey G, Phillips M, Wood F.Demonstration of the validity of the SF-36 formeasurement ofthe temporal recovery of quality of life outcomes in burnssurvivors. Burns 2010;36(7):101320.[12] Coons SJ, Rao S, Keininger DL, Hays RD. A comparative reviewof generic quality-of-life instruments. Pharmacoeconomics2000;17(1):1335.[13] Meirte J, Van Daele U, Maertens K, Moortgat P, Deleus R, VanLoeyNE.Convergent anddiscriminant validityofqualityof lifemeasures used in burn populations. Burns 2017;43(1):8492.[14] Brooks R. EuroQol: the current state of play. Health Policy1996;37(1):5372.[15] Öster C, Willebrand M, Dyster-Aas J, Kildal M, Ekselius L.Validation of the EQ-5D questionnaire in burn injured adults.Burns 2009;35(5):72332.[16] Kazis LE, Selim A, Qian S, Rothendler J. About the VR-36/VR12and VR-6D.. 2020 Available from: [58_TD$DIFF][46_TD$DIFF]https://www.bu.edu/sph/about/departments/health-law-policy-and-management/research/vr-36-vr-12-and-vr-6d/ [accessed 05.15.20].[17] Dore EC, Marino M, Ni P, Lomelin-Gascon J, Sonis L, Amaya F,et al. Reliability & validity of the LIBRE Profile. Burns 2018;44(7):17508.1722 b u r n s 4 6 ( 2 0 2 0 ) 1 7 0 7 1 7 2 8D.W. Edgara,b,c,*aState Adult Burn Unit, Fiona Stanley Hospital, Murdoch, AustraliabBurn Injury Research Node, The Institute for Health Research, TheUniversity of Notre Dame Australia, Fremantle, AustraliacFionaWoodFoundation, FionaStanleyHospital,Murdoch,AustraliaU. Van Daelea,baDepartment of Rehabilitation Sciences and Physiotherapy (REVAKI-MOVANT), Faculty of Medicine and Health Sciences, University ofAntwerp, Antwerp, BelgiumbOscare, Organisation for Burns, Scar After-Care and Research,Antwerp, BelgiumI. Spronka,bM. van Baara,baAssociation of Dutch Burn Centres, Maasstad Hospital, Rotterdam,The NetherlandsbErasmus MC, University Medical Center Rotterdam, Department ofPublic Health, Rotterdam, The NetherlandsN. van Loeya,baAssociation of Dutch Burn Centres, Department Psychological andNursing Research, Beverwijk, The NetherlandsbUtrecht University, Department of Clinical Psychology, Utrecht, TheNetherlandsF.M. Wooda,b,caFiona Wood Foundation, Fiona Stanley Hospital, Murdoch,AustraliabBurn Service ofWesternAustralia, Fiona StanleyHospital and PerthChildren's Hospital, Perth, AustraliacBurn Injury Research Unit, University of Western Australia,Crawley, AustraliaL.B. KazisaaHealth Outcomes Unit and Center for the Assessment ofPharmaceutical Practices (CAPP), Department of Health Law, PolicyandManagement; Boston University School of Public Health, Boston,MassachusettsJ. Meirtea,baOscare, Organisation for Burns, Scar After-Care and Research,Antwerp, BelgiumbDepartment of Rehabilitation Sciences and Physiotherapy (REVAKI-MOVANT), Faculty of Medicine and Health Sciences, University ofAntwerp, Antwerp, Belgium* Corresponding author at: State Adult Burn Unit, Fiona StanleyHospital, Murdoch, Australia.E-mail address: dale.edgar@health.wa.gov.au (D. Edgar).http://dx.doi.org/10.1016/j.burns.2020.05.024© 2020 Elsevier Ltd and ISBI. All rights reserved.Letter to the EditorComments on “Comparative efficacyof intralesionalverapamil hydrochloride and triamcinoloneacetonide in hypertrophic scars and keloids”Dear [10_TD$DIFF]Editor,With great interest, we read the study by Ahuja et al. in 2014 [1]. It concluded that verapamil was almost as effective astriamcinolone acetonide (TAC), which provided more options for the treatment of hypertrophic scars and keloids. Moreover, itsuggested that verapamil could be an alternative of TAC or used in more or larger scars to reduce the side effects of TAC,simultaneously. Furthermore, a lot of interesting contents were mentioned in the discussion section.While reading the discussion section, we noticed that they cited a Chinese study and considered that the 5-FU and TAC wereweekly delivered intralesionally [11_TD$DIFF] 2]. Unfortunately, when we viewed the original paper, we found that the injection regimen wasevery 4 weeks, rather than weekly delivery as mentioned in Ahuja et al. [12_TD$DIFF] 1].Additionally, in the evaluation of the treatment effect, the author used the Vancouver Scar Scale (VSS). However, they onlycompared the scores of each category and did not calculate the total score. Although the scores of some categories were zero, westill thought it was necessary to calculate the total VSS score as Abedini et al. when evaluating the final treatment effect [3].Through this article, there is a question worth to considering, whether it is necessary to conduct a research on the injectionfrequency or whether a more frequent intralesional injection will get a better result.b u r n s 4 6 ( 2 0 2 0 ) 1 7 0 7 1 7 2 8 1723

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

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

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