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The global incidence rate of traumatic SCI was estimated at 23 cases per
millionoratotalofabout179,000casesin2007(82).TheincidencerateofSCI
intheUnitedStates,documentedinTable4.1,isclosetowhatwasreportedin
Canada(41casesor53casesincludingpre-hospitaldeathspermillionin2010)
(72) but is much higher than the rate in other global regions defined by the
WorldHealthOrganization:Caribbean(19permillion),LatinAmerica-Andean
(19 per million), Latin America-Central (24 per million), Latin AmericaSouthern(25permillion),WesternEurope(16permillion),Australia(15–32per
million)(84), Asia-Central(25permillion), Asia-South (21 per million),SubSaharan Africa-Central (29 per million), and Sub-Saharan Africa-East (21 per
million)(82).Itisdifficultto comparedatafromdifferentcountriesduetothe
differences in reporting procedures, case definition, and completeness of case
ascertainment.Nevertheless, the international variations in SCI incidencerates
areanticipated because of thedifferencesin theriskof SCI by theunderlying
populationcharacteristics(age,sex,andrace)andexternalfactors(urbanization,
roadconditions,andpolicymeasuressuchasguncontrolandimplementationof
seatbeltrestraintlaws,etc.).Incountrieswithahighpre-hospitaldeathrate,the
exclusion of those who die at the scene of the accident might greatly
underestimatetheSCIincidencerateanditsimpact(85).
Regardingthedemographicprofile,thehigherriskofSCIformalesandthe
bimodal age distribution are nearly consistent throughout the world, with a
higherriskinpersonsaged15to 29and≥65years.Motorvehiclecrashesand
fallsarethemostcommoncausesofinjury.Inthedevelopedcountries,asnoted
inthe UnitedStates, thepercentage ofinjuriesdue tomotor vehiclecrashes is
decreasing or remains stable, while the percentage as a result of low falls is
increasingwithagingpopulations(82).Inthedevelopingcountries,theetiology
profile is different.The percentage of injuries due to motorvehicle crashesis
increasingasaresultofurbanization,increaseduseofmotorizedtransport,poor
infrastructure (such as road conditions), and regulatory challenges (80). Low
fallsarerelativelycommoninyoungpeoplewhilecarryingheavyloadsonthe
head in some developing countries (82). In most countries, except the United
States,Brazil,andregionsofconflictsorwars,thepercentageofSCIduetoacts
ofviolenceisloworzero(82)
DevelopingcountriesalsodifferfromtheUnitedStates,andotherdeveloped
countries in that complete injuries are slightly more commonthan incomplete
injuries (56.5% vs. 43.0%), and paraplegia is more common than tetraplegia
(58.7%vs.40.6%)inthedevelopingcountries(80).MortalityafterSCIhasalso
beendocumentedtovarysubstantiallybyregionandcountryincomelevels(62).
The in-hospital mortality rate is nearly three times higher in low-income
countries than in high-income countries, being 24.1%, 7.6%, and 7.0% in the
regionsofAfrica,theAmericas,andEurope,respectively.Developingcountries
alsohavehigher1-yearmortalityrates,particularlyintheSub-SaharanAfricaWestregion(29%)(82).
The limited data on prevalence estimates indicate that the prevalence rate
worldwide ranges from 236 cases per million in India in 1986 to 1,298 per
million in Canada in 2010(79,82). The prevalence rates are 490 to 886 per
million in Australia, 236 to 464 per million in the regions of Asia-South and
Asia-Southeast,and280to316permillioninWesternEurope.SCIprevalenceis
expectedtobehigherintheUnitedStatesthaninothercountriesbecauseofthe
relativelyhighincidenceand/orgoodsurvivalratesafterSCI.However,because
of the differences in research methodology,the comparison between estimates
andstudiesischallenging,anditisdifficulttodrawavalidconclusion.
COST
One of the most frequent inquiries that the National SCI Statistical Center
receivesfromthepublicconcernsthecostsofcareforsomeonewithSCI.For
example,familieswant to ensure adequate resources are set aside for care for
theirlovedones,lawyersseekreasonablecompensationfortheirinjuredclients,
and the media searches data for a report of financial burdens to the society.
Knowledgeoftheeconomicimpacttosocietyisalsoimportantforthepurpose
of resource allocation. Finding a perfect answer to this cost question is
challenginginpartbecausethecostsofcarevarysubstantiallybythecommunity
inwhichtheindividualresides,thecharacteristicsofthepersonwithSCI(age,
level and completeness of injury, health status), and the actual needs of the
individual.
Comparing cost studies and appropriately interpreting the results is also
difficult. First, it is critical to distinguish between charges and costs. For
example, hospital charges reflect the hospital’s retail price for covered and
noncovered services, while the costs reflect the amount paid by the payer.
Chargesandcosts donot takeinto accountthe needsof personswith SCI,but
ratherarebasedongoodsandservicesactuallyreceived,andthusunderestimate
thecostsofoptimalcare.Second,itis importanttoknow whether the studies
captureonlytheincrementalcharges,itemsthataredirectlyrelatedtoSCI,such
thatothermedicalexpensesthatwouldbeencounteredintheabsenceofSCIare
not included. Lastly,the indirectand intangible costs (e.g.,loss of wages and
productivity, psychological stress,andcaregiver’sburden, etc.) arenotusually
includedintheestimatesofeconomicburden.
UsingthelimitedliteratureavailableanddatafromtheNSCID,thissection
willtrytoaddressthefollowingconcernsaboutthedirectcostsofSCI:1)costs
toanindividualonanannualbasis,2)coststoanindividualovertheirlifetime,
3)coststosocietyofnewcasesofSCIarisinginaparticularyear,and4)coststo
society of all persons with SCI in a particular year. These estimates are not
perfectbutprovideageneralguideforlifecareplanningandalsoimproveour
understandingofthefinancialimplicationsofpreventionofSCIandassociated
complications.AbetterunderstandingofthetotalcostsofSCIandthecostsof
componentsthatmakeupthistotalwillimprovethechancesofminimizingthese
costsandimprovingthequalityoflifeofindividualswithSCI.
Thelateststudiesthatcomprehensivelyandgeographicallycoverallservices
andactualchargesincurredbypersonswithSCIofawiderangeofdemographic
and clinical characteristics in the United States were conducted in the early
1990s(86–88).OneofthethreestudieswasrecentlyupdatedwithNSCIDdata
obtainedduring2000to2006,includingdataregardingacuteandrehabilitation
hospital charges, rehospitalization, and nursing home and attendant care (89).
However,the NSCID does not contain newinformationon the following cost
categoriesincludedintheoriginalstudy:emergencymedicalservices,outpatient
services and physician fees, medications, supplies, vocational rehabilitation,
environmentalmodifications,durableequipment,andothermiscellaneouscosts.
Therefore,thecostsforthesecategoriesthatwereestimatedintheoriginalstudy
in1992U.S.dollars(USD) wereadjustedforinflationto 2009USD usingthe
consumerpriceindexforallitems.Table4.6summarizesthefindingsofaverage
first-yearandannualexpensesthereafterin2017USDforpersonswithSCIover
theirremaininglifetimebyneurologiclevelandextentofinjury.
Theaveragefirst-yearchargeis$604,866,andtheaverageannualchargefor
theremainderoflifeisestimatedat$92,228butvariesconsiderablybyleveland
completenessofinjury.Duringthefirstyear,mostchargesresultfrominpatient
acute care and rehabilitation. Significant charges are also often incurred for
attendantcare,durableequipment,andenvironmentalmodifications,particularly
forpersonswithcervicalinjuriesduringthefirstyearafterdischargefromacute
hospital care. Recurrent annual charges are mostly for attendant care and
rehospitalizations.Adetailedcategorizationofthesechargeshasbeen reported
previously(89).
Giventheadvancesinmedicaltechnologyandimprovedacutesurvivalrates,
thedirectcostsofSCIarelikelytoincreaseatarapidpace,andasaresult,these
estimates(Table 4.6) derived from data in the early 1990s and updated in the
early2000sarelikelytobeconservative.Forexample,arecentpopulation-based
study conducted in South Carolina noted a consistent increase in acute care
chargeovera15-yearperiod,withoutacorrespondingincreaseinthelengthof
stay(23).Theacutecarechargeincreasedfromapproximately$50,000in1998
to$225,000in2012,risingfasterthaninflation.Asimilarupwardtrendinacute
careandrehabilitationchargesisalsonotedinpreviousNSCIDstudies(90).
Arecentreviewofthehealthcarecostsforthemanagementofveteranswith
traumaticand nontraumaticSCIindicates that theaverage annual costsranged
from$30,770to$62,563in 2016 USD (or $31,426 to $63,896 in 2017 USD)
(91), generally lower than the costs of caring for civilians with SCI. These
studies,however,werelimitedtothecostsofservicesprovidedbytheVeterans
Administrationhealthcaresystemandthusdidnotincludethecostofattendant
care and other services provided byother providers. Conversely, thesestudies
didnotseemtoincludeinthedenominatorindividualswhowerehealthyanddid
not receive any services, and therefore, possibly overstate average costs per
person.
Thelifetimedirectcosts,definedastotaldirectchargesovertheremaining
life,canbedeterminedbythedirectchargeseveryyearandprobabilitiesthatan
individualwillstillbealiveeachyeartoincurthosecharges.Theseestimatesare
usuallycalculatedasthepresentvalueoffuturecosts,whichcanbeinterpreted
asfunds setaside atpresent inescrowfor usethroughout thelifetime. Asone
dollartodayisworthmorethan1dollarinthefutureduetotheinterestearned
between now and then, the discount rate reflects the real rate of return on
investments over and above inflation. The estimated present value of average
lifetimedirect costs of SCI in 2017USDusinga real discount rate of 2% for
personsinjuredatage25and50,byneurologiclevelandextentofinjury,also
appearsinTable4.6.Atage25,thelifetimedirectcostofcareisestimatedtobe
$4,891,398forpersonswithaC1–C4AISA,B,orCinjuryand$1,634,139for
personswithanAISDinjuryatanylevel(92).Estimatesoflifetimecostsatage
50arelowerbecauseofthelowerlifeexpectancyforthesepersons.
Because of the assumptionthat the annual recurrent chargesafter the first
post-injuryyear are constant over time in calculating the lifetimecosts (Table
4.6),therealcostsmighthavebeenunderestimated,asthereisevidencethatthe
directcostsincreasesubstantiallyduringthelastfewyearsoflifeinpersonswith
SCI.InastudyoncostsofSCIcarein theVeteransAdministration healthcare
system,theaveragecost ofservicesprovidedinthelastyear oflife,excluding
pharmacycosts,is$61,900in2001USD(or$85,674in2017USD),whereasthe
averagecost is$24,900 (or$34,464 in2017USD) inthe previousyear oflife
(93).
Dataderivedfromthe NationwideEmergencyDepartmentSampleindicate
anaverage$1.6billionin2009USD(or$1.8billionin2017USD)wascharged
annually for treatment of acute SCI for all emergency department visits and
subsequent inpatient encounters in 2007 to 2009 (21). Another study of the
NationalInpatientSample reported a total of 11,848weighted hospitalizations
occurrednationallywithaprimarydiagnosisofSCIin 2009andestimated the
totalnationalhospitalchargesrelatedtoSCI,acute,andchronic,at$1.7billion
in 2009 USD (or $1.9 billion in 2017 USD) (94). The total number of
hospitalizations related to SCI seems low, given the knowledge of the annual
SCIincidenceandthefrequencyofrehospitalizationafterSCI(~30%).Thus,the
nationalhospitalization burden isprobablyunderstated. Totalannualaggregate
directcosts,includinghospitalizationcharges,attendantcare,andotherservices,
estimatedby theNSCID samplein the1990s,is$7.7billion in1995 USD(or
$12.4billionin2017USD)(95).
CONCLUSION
With the increasing availability of nationwide administrative data sets and
advancedanalyticmethodology,ourunderstandingof theepidemiology ofSCI
intheUnitedStateshasgreatlyimprovedoverthelastfewyears,particularlyin
theincidencerateandhospitalcharges.ThesupportfromtheNationalInstitute
on Disability, Independent Living, and Rehabilitation Research allows the
NSCID to continue updating the trends in demographic, injury etiology, and
clinicalprofilesofpeoplewithSCIreportedsincetheearly1970s.Thankstothe
recentinternationaleffortsinassemblingandsummarizingdata,muchisknown
aboutthedescriptiveworldwideepidemiologyofSCI.Currenteffortsdirectedto
standardize data collection (96) make it possible to combine different data
sourcesinwaysthattakefulladvantageoftheuniquestrengthsofeachavailable
databasetoaddresscommonquestionsacrosstheglobe,suchasthedevelopment
ofcost-effectiveprimarypreventionprograms.
Substantial variations of specific etiologies of injury by age, sex,
race/ethnicity, day, and month highlight the need for prevention strategies
tailored to the targeted population and major causes of SCI to increase the
impactonreducing the incidence of SCI. In light of the aging population and
fallsasthemostcommoncausesofSCIintheelderlyintheUnitedStatesand
otherdeveloped countries, there is an urgentneed for effectivefallprevention
programstoreduceSCIinthisexpandingpopulation.Educationalmaterialsthat
portraySCIcases asmen intheirteensandearly20salso needtobeupdated.
Demographic and injury trends in new SCIs call for greater involvement of
experts in gerontology and geriatrics and intercultural competency of clinical
teamsduringacuteandrehabilitationcareforSCI.
A strong relationship between etiologies and level/completeness of injury
alsoprovidesinsightregardingthemechanismsofinjury,whichwillaidinthe
design of equipment and other safety measures for reducing the incidence of
SCI. In addition to personal characteristics and mechanical causes, specific
behavioralandenvironmentalfactorsneedtobeconsideredinthedevelopment
and coordination of prevention efforts, for instance alcohol use, seat belt use,
distracteddriving,roadconditions,andlawsandlawenforcement.
Future epidemiology efforts should focus on developing a more accurate
profileofpersonswithSCIwhoarealivetodayaswellasthedirectandindirect
costsofSCI.Thiswillallowclinicalandotherlifelongsupportiveservicestobe
betterorganizedandcoordinated.
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