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4
EpidemiologyofSpinalCordInjury
YuyingChenandMichaelJ.DeVivo
INTRODUCTION
Spinal cord injury (SCI), typically definedas an acute traumatic lesionof the spinal cord resulting in any degree of sensory/motor deficit or bladder/bowel dysfunctiontemporarilyorpermanently(1),onlyaccountsforasmallproportion of all injuries; but the associated disabilities, life changes, and economic consequencesmakeSCIoneofthemostcatastrophicinjuries.Asdisabilitiesare typically permanent and there is currently no cure, the importance of primary prevention of SCI cannot be stressedenough. Understanding the risk and risk factorsofSCIisessentialforinjurypreventionandcontrol.Knowledgeoftrends inSCIepidemiologycanalsohelpassessfuturehealthcareneedsthroughoutthe regionandcountry.InformationoncostsofcareisvaluabletopersonswithSCI, lifecareplanners,casemanagers,lawyers,andinsurancecompanies,whomust ensurethatadequateresourcesaresetasidetomeettheneedsofanindividual withSCIovertheremainderofhisorherlifetime.
Thegoalofthischapteristoprovideanoverviewofthedemographic,injury, and clinical profiles of people with acute SCI and the characteristics of those currentlylivingwithSCI.TheeconomicimpactsofSCIarediscussedaswell.In additionto reviewing literature worldwide, data from the National SCI Model SystemsDatabase(NSCID)intheUnitedStates(2)havebeenutilizedtofurther illustratethetrendsindemographicandinjuryprofilesoverthelastfivedecades.
The NSCID contains baseline and follow-up information on persons with traumaticSCIwhoreceivedinitialhospitalcarefromoneofthe29SCIModel Systems Centers since the early 1970s; it currently captures data from approximately6%ofnewSCIsintheUnitedStates(2).AsofNovember2017, thereare32,727personswhowere injuredbetween1972 and2017enrolledin theNSCID.
INCIDENCE:HOWMANYPEOPLESUSTAINSCI EVERYYEAR
Annualincidenceisameasureofthenumberofnewcasesthatoccurduringa1­yearperiod. To betterestimate theimpactofSCI,during the1980s and1990s many states in the United States established a population-based surveillance systemandmandated by law the reporting of new caseswithSCIto the state healthdepartment(1). Hospitals were the primary sources of information, but some states also required reporting from public/private health and social agencies, physicians, emergency medical services staff, and chief medical examiners.BasedonreportspublishedbythesestateSCIregistries(3–14),the annual incidence of SCI varies from a low of 25.0 new cases per million populationinWestVirginiain1985to1988(3)toahighof83.0newcasesper millionpopulationinAlaskain1991to1993(14)(Table4.1).Otherpopulation­based studies conducted in the United States from the 1970s to 1990s at the regional(15–18)andnationallevel(19,20)showedasimilarrangeofvariation (Table4.1).Differencesintheseincidenceestimatesareduetoacombinationof factors, including regional differences in population characteristics (e.g., age, sex, and race) and research methodology (e.g., case definition, eligibility, reporting procedures, and completeness of case ascertainment). Overall, SCI incidencewasknownformanyyearstoaverageabout40newcasespermillion populationperyearuntilmostrecently.
Anestimate derived from an ongoingstatewidetraumaticSCI surveillance and follow-up registry indicates an overall incidence rate of 70.8 per million populationperyearfrom1998through2012amongpersonsolderthan21years inSouthCarolina (23).Given theincreasingavailabilityofadministrativedata setsandimprovedanalytictechniques,SCIincidencefigureswerealsorecently updatedwithdatafromlargenationwidesamples(Table4.1).Basedonthedata from the Nationwide Emergency Department Sample, the largest all-payer
emergency department database in the United States (21), it is estimated that between 2007 and 2009, 56 per million adults (aged ≥ 18 years) visited emergency departments for acute SCI each year. Another study utilizing data from the Health Care Cost and Utilization Project—Nationwide Inpatient Sample(22)—reportsacomparablefigure,54cases(95%CI:53–55cases)per millionpeople aged ≥ 16 years received inpatient care for acute SCIin 2012. This corresponds to approximately 17,700 new SCI cases eachyear giventhe current population size of 327 million people in the United States. Because administrativedataareoriginallyintendedforbillingpurposes,multipleinherent limitations(24,25)cannotbeoverlookedininterpretingtheabovereportssolely onthebasisoftheadministrativedata.Forexample,giventhatthesetwostudies heavilyrelied onprincipaldiagnosis codestoidentify SCIcases,it ispossible that people with chronic SCI receiving emergency or inpatient care for other reasonswere giventheprincipal diagnosisof SCI byclinicians if theSCI had morefinancialincentivesthanthelessseveresecondaryconditions.Asaresult, theSCIincidenceratesmighthavebeenoverreported.
Becausechildrenwereexcludedfromtherecentincidencestudiesmentioned earlierandalsobecausetheriskofSCIislowerinchildren,theoverallincidence rate of SCI (including all ages) in the United States might have been overestimated by these reports that were based on the adult population. The incidence rate of SCIis typically less than10 new cases permillion children aged0to15yearsandabout20to25newcasespermillionchildrenaged0to 19yearseachyearintheUnitedStates.(3,9–14,19,26–28)Childrenyoungerthan 16yearsaccountforabout3%to5%oftotalSCIsthatoccureachyear.
Mostof the SCIincidenceestimates didnotinclude those whodiedat the siteofthe incidentthat causedtheSCI.Theincidence rateof pre-hospitalSCI deaths,reportedbyalimitednumberofstudies(12,13,17,18),rangesfromfour casespermillion(9.3%oftotalSCIs)inUtahin1989to1991to21cases per
million(39.7%oftotalSCIs)inNorthernCaliforniain1970to1971.
ExternalCausesofInjury
External causes of SCI are often grouped into five categories: motor vehicle crashes, violence, sports/recreational activities, falls,and all other causes. The NSCID also records the impairment of spinal cord function resulting from adverseeffectsofmedical,surgical,ordiagnosticproceduresandtreatmentsfor nonspinal cord conditions as the sixth category. The NSCID’s 2017 Annual StatisticalReport(29)andTable4.2showthatmotorvehiclecrashescontinueto betheleadingcauseofSCI,althoughthepercentagedeclinedfrom47.0%inthe 1970sto 38.3% during 2015to2017. The percentageofSCIs due to fallshas increased gradually and persistently over the last five decades and currently (2015–2017) accounts for 31.6% of all SCIs reported to the NSCID. Acts of violence,primarilyfirearminjuries,arealsoarelativelycommoncauseofSCI (13.8%),followedbysports/recreationalactivities(8.2%),medicalandsurgical complications (4.6%), and all others (3.5%), including hit or stuck by objects/othersandpedestrianinjuries.
ComparedwiththeNSCIDreports,recentstudiesusingadministrativedata reportedfewercategoriesofinjuryetiologiesandnotedslightlydifferentfigures.
AmongadultsvisitingtheemergencydepartmentsforacuteSCIduring2007to 2009,the most commoncauseof injury wasfalls(41.5%), followed bymotor vehicular collision (35.5%), other unclassed (14.9%), struck by others/objects (4.3%),andfirearms(3.8%)(23).Datafromthe2012inpatientsampleshowed that40.4%ofSCIswerecausedbyunintentionalfalls,31.0%bymotorvehicle crashes,and5.4%byfirearms(21).
ThepercentageofviolentetiologiesintheNSCIDishigherthanwhat was reportedbystudiesofadministrativedatabecauseoftheurbanlocationofmany of the SCI Model Systems Centers that contribute data to the database. The under-representation of fall etiology in the NSCID is partly explained by the NSCID eligibility criteria that call for neurological deficits and completed rehabilitation with some exceptions. In other words, those with minimal neurologicaldeficitswho neverreceivedrehabilitationareexcluded,andmany of them are likely to be older patients with fall etiologies. The National SCI StatisticalCenterwebsiteprovidesaninteractivetoolforthepublictobuildan NSCID etiology profile by demographics and multiple timeframes (www.nscisc.uab.edu/Public_Pages/LeadingCauses).
RiskFactors
Age-SpecificRiskandCauseofInjury TheincidenceofSCIwashistoricallyknowntobe thelowestforthepediatric group(youngerthan16years)andhighestforpersonsintheirlateteensand20s, withthisknowledgesupportedbyvirtuallyallincidencestudiesconductedinthe 1970sto1990s(Figure4.1A).Recentreportslookedintotheolderagegroups(≥ 65 years) in further detail and noted an increased risk with advancing age (Figure 4.1B) (21–23). This change in age-specific incidence rates over time suggeststhatpersons65to84yearsoldarecurrentlymoreactivethanthosewho wereinthatagegroupinthe1970sto1990s,andincreasedactivitycontributes totheincreasedriskofSCIinthisagegroup.
FIGURE4.1 Annualincidence rate ofSCI(per million)byage and sex in Oklahoma 1988–1990 (A) and based on the Nationwide InpatientSamplein2012(B).
SCI,Spinalcordinjury.
External causes of injury vary substantially by age (9,11,30,31). Injuries resultingfrom recreationalsport mishaps arecommon amongpersonsyounger than15years(29).Violentetiologiesdeclinewithadvancingage,whereasSCIs resultingfrom fallsand medical/surgicalcomplicationsincreaseproportionally.