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Файл:Ординатура / Хирургия / Библиотека им академика М.И. Перельмана / Книга_6022_Библиотеки_им_академика_М_И_Перельмана
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sinceinjury,andmeasuresofinjuryseverity,inadditiontospecificmeasuresof
functioning,selectionofwhichdependsonprogramtypeandtimeoffollowup.
The UDSMR, in which many inpatient rehabilitation facilities in the United
States participate, as well as some subacute facilities and nursing homes that
offerrehabilitation,isonesuchdataaggregator(41);eRehabData(42)isanother.
Comparisons between programs are only fair, of course, if their inputs
(admission status) are the same; programs that treat patients who are more
severelyinjured,orwhohavesignificantcomorbiditiesmayhaveasteeperhill
to climb than those with less demanding caseloads. Thus, UDSMR and other
aggregatorsproducereportsthatcomparelikewithlike,intermsofdiagnostic
group, comorbidities, age, and other factors considered relevant tochances of
programsuccess—therelevant“casemix.”
Resources in rehabilitation organizations are not infinite, and efficiencyis
oftenakeycomponentofprogramevaluation.Lengthofstay(LOS)istypically
usedasagrossindicatorofresourceuse,withfunctionalstatuschangeperday
interpretedasanindicatorofprogramefficiency.(Itmaybeworthrepeatingthat
afewassumptions,includinginterval-levelmeasurementoffunctionalstatus,are
madeincalculatingthisindex;theseassumptionsmaynotstanduptoscrutiny.)
PaymentforRehabilitationServices
FAdataalsohavesignificantimplicationsforthefinancingofhealthcare.Since
2002, the U.S. CMS has, under its Prospective Payment System (PPS), paid
inpatient rehabilitation facilities (IRFs) fixed amounts for each patient
discharged, rather than reimbursing based on (adjusted) charges, costs of
operations,or some otherformulaused inearlieryears and stillusedby some
otherpayors.Thefixedamountsarebasedinpartonthefunctionalstatusofthe
patientonadmission,combinedwithdiagnosticcategory(stroke,SCI,TBI,etc.)
and age category, together defining Function-Related Groups (FRGs). For
measuringfunctionalstatus,aminorvariationontheFIMhasbeenused,which
is embedded in the Inpatient Rehabilitation Facility-Patient Assessment
Instrument(IRF-PAI(43)). Thecombination ofdiagnosis,status,category,and
agedefinesagroupofpatientswhoserehabilitationrequiressimilarresources,as
acknowledged in the payment amount for each case. (This payment is further
adjusted for comorbidities [“tiers”], salary levels in the region the facility is
located,etc.)ThePPShasgivenIRFsfinancialincentivetohastenthepaceat
whichfunctionalimprovementandotheroutcomesareachieved,andtoperform
more complete and accurate admission FAs. Nursing homes and home health
agencies have been paid on a similar basis as IRFs, but have their own
measurement instruments. Third-party payors other than CMS also may use
functionalstatus(ratherthandiagnosis)asakeyelementindeterminingthelevel
ofpaymentto rehabilitationand other facilities, because functioning is such a
majordeterminantofresourceconsumption,andthusFAinformationaddsvalue
toreimbursementsystems.Therehasbeenapushinrecentyearstolinkpayment
forservices to the quality of theiroutcomes,and new assessment instruments,
such as the Continuity Assessment Record and Evaluation (CARE) Tool of
CMS,arebeingdevelopedforuseinsuchapplications(44).
Research
Program evaluation typically does not tackle what was done for individual
patients to explain changes in functional status (the “black box” aspect of
rehabilitation). It also does not systematically address alternative explanations
for outcomes and has no hard evidence for the effectiveness of traditional or
innovative treatments. This is where research comes in. Most research in this
areaconcerns: 1.the developmentofFAinstruments, includingassessing their
reliability, validity, sensitivity, and practicality; 2. the use of FA measures to
evaluate the effects of routine or experimental rehabilitative treatments; 3.
screeningsubjectsforsuchtreatmentprograms;4.evaluatingthelinksbetween
Impairment, Activity, and Participation; 5. describing the natural course of
disablement;or6.assessingthefinancialandsocialimpactsofdisability.
Because functioning is the central interest of rehabilitation providers,
researchers,andtheirpatients/clients,itistobeexpectedthatmuchofresearch
uses FA information as either the “independent” (predictor) variable, the
“dependent”(outcome)variable,orboth.Itisworthwhiletoremember,though,
thatbeforeanyuseismadeoftheresultsofthisresearch,itneedstobeassessed
in terms of the applicability of the FA instruments selected and their
psychometricqualities.Theconclusionsofandrecommendationsbyresearchers
areonlyasgoodastheFAinstrumentstheyused.
SUBJECTIVEVALUATIONOFFUNCTIONAL
PERFORMANCE
AmajorcriticismofmostoftheFAmeasuresusedinSCIclinicalcare,program
evaluation,andresearchisthefactthattheydonotreflectthesubjectiveviewof
the person involved. “Normal functioning” may be alaudablegoal, but not if
thatfunctioningdetractsfromtheperson’ssubjectiveQOL.Severalstudieshave
shownthatParticipationrestrictionaccountsformuchmore ofthevariancein
lifesatisfaction orwell-being thando Impairments or Activitylimitations (45).
Thus,foratleastsomeapplications,thefitbetweenfunctionalactivitiesandthe
person’s values and preferences needs to be considered and reflected in some
wayinFAinstruments,especiallyinParticipationmeasures.Thepointofview
ofthe insider,theperson withSCI,to datehasnot beeninvestigatedwith any
degreeoftheattentionitdeserves.
Although most instruments designed to measure aspects of “functioning”
haveconcentratedonthe“howindependent”and“howmuch”ofacts,actions,
androles,afewhaveexploredadditionaldimensions.GoalAttainmentScaling
(GAS) and the Canadian Occupational Performance Measure (COPM) are
semistructured approaches by which rehabilitation service recipients and
clinicianstogetherformulateandprioritizeindividualizedgoalsfortherapy,and
upondischargepatientsprovideperceptionsoftheadequacyoftheirfunctional
performance,theirsatisfactionwithit,andtheimportanceofeachgoaltotheir
lives (46,47). The choice of goals reflects individual valuation, as does the
importancerating.Animportance-weightedsumofoutcomeitemscoresserves
asthekeyevaluationmeasure.Afewinstrumentswithstandardizedcontenthave
includedimportanceratings,includingmanyinstrumentstraditionallyclassified
asQOLmeasures(48).
NEW(ER)TECHNOLOGIESINFUNCTIONAL
ASSESSMENT
The field of FA is undergoing slow, but certain change resulting from the
introductionoftechnologiesfromotherscholarlyfields.Thissectionhighlights
sometechnologiesalreadyavailable,orabouttomovefromprototypetouseful
means of collecting and processing FA information in routine clinical and
researchapplications.
ElectronicAdministrationofTests
The wide availability of personal computers, tablets, smartphones, and other
electronic devices makes possible the administration of FA instruments to
patientsorresearchparticipantsusingadevice,ratherthanthetraditionalpaper
andpencil.Electronicdatacollectionhasseveraladvantages.Eliminationofthe
costsandpossibleerrorsresultingfromtranscriptionofthedatafrompapertoa
computerfileisonebenefit;moreimportantisthepotentialforbranching—the
capacity to offer different follow-up questions dependingon the nature ofthe
answertoaninitialone.Itistheequivalentof“skip”and“goto”instructionsin
self-administered paper questionnaires, but much more powerful, and is most
fully exploited in CAT (see later). Similar benefits may be reaped in otheradministered interviews; computer-assisted telephone interviewing (CATI) has
beenatoolofpublicopinionpollingformanyyears,eversincethedoor-to-door
surveyordisappeared.
Tabletsandothertypesofhandheldcomputerscanalsobeusedbyclinicians
and researchers to directly record and score observational data. Improving
qualityandeaseofdataentrycomesatthecostofextensiveprograming,which
often is performed by commercial entities that sell a particular FA system.
Lastly,capacitytestingmaybecompletedusingacomputer,especiallyfortests
thatrequiretiming,countingoferrors,orotheradministratorfunctionsthatare
arduous. It is expected that in the future, computer administration of FA
instrumentswillbecomeincreasinglycommonevenforapplicationswithsmall
samples.“Authoring”-typesoftwarewillmakeitpossibletoputtogethertheuser
interfaces and underlying algorithms in limited time, even by clinicians or
researchers lacking programing skills. In a sense, that time is here with such
web-basedquestionnairedesignandadministrationservicesasZoomerang(49).
The completion of web-based questionnaires and other instruments by
patients/researchsubjects,withinstantscoringofinstrumentsandinstantreturn
ofatotalscoreorevenaninterpretivereport,isanothercurrentapplicationthat
isexpectedtogrowinimportance(50).
ComputerAdaptiveTesting
Onceitisknownthatapatientorresearchsubjectcanwalk2miles,itdoesnot
makemuch sense askinghimif he canwalk 1 mile,orget around inhisown
home. The answer will not provide any useful information, and it is more
informative to next ask whether he can walk 2 miles on uneven ground or
carrying a 10-pound load. This is the premise underlying CAT: based on the
knownrelative ordering offunctionaltasks in termsoftheir difficulty, we can
limitourselvestoaskingonlythosequestionsthatareinformativeastotheexact
positionofthepersonalongtheinability–abilitycontinuum.
CATsarecreatedthroughanalysisofdatafromalargesampleofpeoplewho
answer questions regarding all functional tasks included in one’s battery (the
“item pool”). Rasch analysis or another method of IRT then can be used to
determineiftheentiresetdefinesasingledimension(e.g.,physicalability)and
the relative difficulty of each of the items. Then, for every new individual
interviewed,wecanusethatinformationtodetermine,withaminimumnumber
of questions, his or her ability. First, ability on a moderately difficult task is
determined; based on the result, the questioning shifts to more difficult or to
easiertasks,untilherabilityisknownwithapredeterminedmarginoferror,or
basedonapresetnumberofitemstobeused(22).Computeralgorithmsareused
toestimatetheabilitylevelaftereachindividualitemhasbeencompletedandto
selecttheoptimalnextquestiontoask.ItcanbedemonstratedthatCATcreates
setsofitemsthatproducethe sameprecisionand qualityofinformationasthe
moreexpansiveitembanksfromwhichthesesetsaredrawn.
Insituations where administering a CATis notlogistically feasible,“short
forms” that include a fixed number of items representing various levels of
difficulty can be administered instead, using various means (hard copy form,
interview,etc.),andproducescoresthatareconsideredtobedirectlycomparable
tothoseoftheCAT(51).In2016,theshort-formversionoftheSCI-FImeasure
wasadoptedaspartoftheSpinalCordInjuryModelSystems’longitudinaldata
collection.WhiletheapplicationofCATisinitsearlystages,themethodology
haspromiseasameansofachievingmorepreciseandmoreeffectiveassessment
ofActivitylimitations,Participation,andpossiblyImpairment.
EcologicalMomentaryAssessment
Self-report of one’sfeelings, experiences, and behaviors over an elapsed time
period, unless they are part of a fixed daily routine, is notoriously unreliable.
Ecologicalmomentaryassessment(EMA)referstoasetoftechniquestobring
the reporting of information desired by a clinician or researcher closer to the
timepointthebehaviororfeelingoccurs,andtohavethereportproducedwhile
thesubject iswithinthe relevantsetting rather thanin aresearchoffice.EMA
can be used to answer questions like: In what activity are you currently
engaged?;Howoften in the past hour have you thought about issue X?; With
which people, if any, are you currently interacting? By means of appropriate
methods of aggregating these discrete reports over a day,and individual days
over a longer period, the researcher can obtain a more reliable overview of a
person’sActivitiesandParticipation,providedcompliance withcompletingthe
recordings is adequate (52). In many EMA studies, the subject is alerted at
multiple pre-set or random times a day, using a pager, special pre-programed
wristwatch, or smartphone, and then is requiredtoreport a few key pieces of
informationusingasmallcarry-alongdiary,orasmartphone,tablet,oranother
type of palmtop computer. Because times are sampled, the method is also
referredtoastheexperiencesamplingmethod(ESM),especiallyifthefocusis
onsubjectiveexperiences.ImportantconsiderationsforstudiesusingEMA/ESM
are reducing participant burden and maximizing compliance, which may be
achievedthroughcarefulselectionandprogramingofelectronicdatacollection
methods. To date, EMAmethods have been used in FAresearch on a limited
basis(53,54), andnot yet inSCI. Variousbooks and articlesare available that
providedetailsonthisapproachandthatpresentappropriatemethodstoprocess
andanalyzethecomplexandoftenvoluminousdatathatareproduced(55,56).
InstrumentedRecording
A wide varietyoftechnologies areavailableto gather quantitativeinformation
onfunctional activities (57). Pedometers and other wearable “fitness trackers”
arecommerciallyavailableforusebythepublic,includingdevicescustomized
forwheelchair users (58). Pedometers have been shown to correlate well with
direct observation of activity, but less so with energy expenditure (59).
Accelerometers can similarly record overall activity levels (60), but have
potential to assess the frequency and duration of specifically lower or upper
extremity activity (61), including tracking when, how intensely, and for how
long activity occurred (62), time spent in different postures (sitting, lying,
standing),andwhat specifictype ofactivitytookplace(walking, cycling,etc.)
(63,64). “Data loggers” attached to a wheelchair that utilize GPS make it
possibletodeterminethedistancetheusercoverseachday,andwhatareasshe
frequents (65). Motion capture technology, force sensors, and videography
provide methods for detailed study of mobility (66). Lastly, researchers have
begun to embed sensors into the walls of residences, another method of
capturing signals that can be decoded to make deductions about the level of
functioningofpersonslivingtherein(67).
VirtualReality
Virtual reality (VR) is the name for a collection of technologies allowing
immersion of a person in an environment that is computer generated and
interactive,inthatitchangesinresponsetobehaviorsandactionsbytheperson.
Thesimulatedworldcanbepresentedusingaflat-screendisplay,head-mounted
display,oreven3Dprojectionrooms,andthefeedbackis inresponsetogazetrackingdevices,gesture-sensinggloves,orothermechanismsusedtodetermine
howthepersoninteractswiththeworldsheispresented.VRwasdevelopedfor
treatment purposes, but more and more assessment opportunities are realized,
takingadvantageofthefactthatVRismidwaybetweenthecomplexitiesofthe
natural world and the oversimplifications of the testing laboratory.VR allows
datatobecollectedontheclient’s/patient’s/subject’s response to a naturalistic
environmentwhilethatenvironmentismanipulated(speed,numberororderof
stimuluspresentations—e.g.,carsonavirtualhighwaythepersonisrequiredto
cross) to challenge whatever skills and abilities are of interest to the test
administrator. Researchers are examining the role that VR may play in
facilitatingtraining inwheelchairmobility and manyother skill areasrequired
forlivingwithadisability.Therenowarewheelchairmobilityevaluations(68)
andassessmentsofupper limbfunction(69)tonameafew.Asthetechnology
continuestoadvance,VRmayplayanincreasingroleinFA.
SELECTIONOFAFUNCTIONALASSESSMENT
MEASURE
TheselectionofanFAmeasuretoapplyinaclinical,administrative,orresearch
situation is not straightforward; guidance is available, however (70). A first
questionalwaysshouldbewhatonewantstomeasure:Activity(limitation)only,
or(aspectsof)ImpairmentandParticipation(restriction)inaddition.Although
there are instruments such as the Disability Rating Scale (71) used in TBI
research that covers allthree domains, they oftendo that poorly andofferno
separate scores for the two or three domains. As the correlations between
Impairment,Activity limitation, and Participation restriction are typicallylow,
useoftwoorthreeseparateinstrumentsmaybepreferable.
Asecondquerylikelyiswhethertherearespecificsubdomainswithinthese
three that are of interest. Even within a “narrow” subdomain like hand/arm
function, there may be multiple sub-subdomains (e.g., various grasps,
proprioception,sensation,ADLtasksrequiringhand/armmanipulation)thatmay
ormaynotberepresentedinthenumeroushand-functiontestsavailable(72).If
one’sinterestisinActivity(limitation),aquestionis:whataspectoffunctioning
is of interest, capacity or performance, and consequently, what type of
administration should be selected: testing in a laboratory or other setting,
observation,orreportbythepatientoraproxy?Thislimitschoices,andoptions
mightbeevenmorerestrictedifthepopulationonedealswithhascharacteristics
that make application of the most common instruments impossible—for
example,lackofEnglishproficiency.Theresourcesavailableforadministration
—aspeciallaboratory,administratortraining,timeofadministratorandsubject
—typicallyplayakeyroleininstrumentselection.Lastly,metriccharacteristics
—reliability,validity,sensitivity—shouldinformtheselection,althoughinsome
situations the choice of instruments is so limited that one needs to accept a
measurewithlessthanstellarfeatures.
Evenifallclinicians,researchers,orprogramevaluatorsselecthigh-quality
FAmeasurestouseintheirwork,thedatastillmaynotbecompatiblebecause
theyselecteddifferentmeasures.Inrecentyears,pressurehasdevelopedfordata
creators to adopt consistent measures to make integration ofdatasets feasible.
CliniciansandresearchersassociatedwiththeInternationalSpinalCordSociety
(ISCoS)haveinitiatedaprocessofcreatingSCI“datasets”(73).Thesedatasets
specifyboththecontentandformatofinformationthatneedstobeincludedin
clinicalrecords(basicdatasets)andresearchrecords(basicandexpandeddata
sets)inaparticulararea(74).Todate,acoredatasethasbeenpublished,aswell
asdatasets for sexual function, bowel function, urinary tract function, among
otherareasof Impairment(73). AbasicActivity and Participation datasethas
been published; (75) but an expanded one is still under development. The
NationalInstituteonNeurologicalDisordersandStroke(NINDS)haspublished
acomprehensivesetofCommonDataElements(CDEs)foruseinSCIclinical
research(76). These consist of variables and measures forquantifyingvarious
characteristicsrecommendedbasedonexpertconsensusandprovidecasereport
forms.ManyoftheISCoSInternationalSCIDataSetshavebeenincorporatedin
wholeorinpartintotheNINDSSCICDEs.
Overtheyears,manypapershavebeenpublishedthatreviewFAmeasures,
eitherin general (17,23,46,71,77–83) or specificallyas applicable in SCI care
andresearch(84–100).Morerecently,SRsofFAmeasuresforuseinSCIhave
beenpublishedthatoffercliniciansandresearchersasimplewayofidentifying
relevantmeasuresandbecomingawareofallpublishedresearchrelevanttotheir
psychometriccharacteristics.
TheCanadianSCIRE(SpinalCordInjuryRehabilitationEvidence)initiative
has reviewed many outcome measures, including measures that operationalize
componentsof functioning as traditionallydefinedin FAas they relate to SCI
(98).IntheUnitedStates,asimilarinitiativehasbeendevelopedbytheShirley
Ryan AbilityLab (formerly the Rehabilitation Institute of Chicago): the
RehabilitationMeasuresDatabase(RMD)(101).WhilenotfocusingonSCI,the
RMD reviews measures based on published primary literature and indicates
which ones are appropriate to SCI. While the SRs sometimes offer direct
comparisons of measures of a particular domain, the two websites have the
advantageofnotbeinglimitedbyspacelimitationsandareabletogivecomplete
psychometricdata,sometimesfollowedbyacopyofameasureifthecopyright
holder permits such. As they are accessible without a fee, they are a quick
starting point for the selection of ameasure to be used in researchorclinical
care.
Table 8.1 offers a listing of selected SCI-relevant FA measures in seven
categories.Assignmenttothesecategoriesisbasedonthepresentauthors’view
of what construct each measure primarily operationalizes; they concede that
othersmightmakedifferentchoices,andmanymeasurescouldbelistedinmore
thanonecategory.Prioritywasgiventomeasuresthathavebeenincludedinan
SR;afewnewermeasuresthatdonotappearinaSRarepresentedbecausethe
high quality of their development suggests they likely will receive positive
comments from reviewers in the future. We provide information on the SCI
SR(s)inwhich themeasure isincludedwhereapplicable.Given theunceasing
interestresearchersandclinicianshaveinFAmeasures,newonesareconstantly
being developed, and new metric information on existing ones is being
published. When looking for outcomes measures for a research or clinical
evaluationproject,thereadershouldconsultwebsitesthatareregularlyupdated
(98,101) and/or do a bibliographic database search for reviews of FA
instruments.
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