Adequacy of the Comprehensive Clinical Evaluation Program: a focused assessment
Transcript of Adequacy of the Comprehensive Clinical Evaluation Program: a focused assessment
AdequacyoftheComprehensiveClinicalEvaluationProgramAFocusedAssessment
CommitteeontheEvaluationoftheDepartmentofDefenseComprehensiveClinicalEvaluationProgram
DivisionofHealthPromotionandDiseasePrevention
INSTITUTEOFMEDICINE
NATIONALACADEMYPRESSWashington,D.C.1997
title:AdequacyoftheComprehensiveClinicalEvaluationProgram:AFocusedAssessment
author:publisher: NationalAcademiesPress
isbn10|asin: 0309059496printisbn13: 9780309059497ebookisbn13: 9780585002521
language: English
subject
PersianGulfWar,1991--Veterans--Diseases--UnitedStates,PersianGulfWar,1991--Veterans--Medicalcare--UnitedStates,PersianGulfWar,1991--Healthaspects--UnitedStates,UnitedStates.--Dept.ofDefense.--PersianGulfComprehensiveClinicalEvaluat
publicationdate: 1997lcc: DS79.744.H42A341997ebddc: 956.70442
PersianGulfWar,1991--Veterans--
subject:
Diseases--UnitedStates,PersianGulfWar,1991--Veterans--Medicalcare--UnitedStates,PersianGulfWar,1991--Healthaspects--UnitedStates,UnitedStates.--Dept.ofDefense.--PersianGulfComprehensiveClinicalEvaluat
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NOTICE:TheprojectthatisthesubjectofthisreportwasapprovedbytheGoverningBoardoftheNationalResearchCouncil,whosemembersaredrawnfromthecouncilsoftheNationalAcademyofSciences,theNationalAcademyofEngineering,andtheInstituteofMedicine.Themembersofthecommitteeresponsibleforthereportwerechosenfortheirspecialcompetencesandwithregardforappropriatebalance.
ThisreporthasbeenreviewedbyagroupotherthantheauthorsaccordingtoproceduresapprovedbytheReportReviewCommitteeconsistingofmembersoftheNationalAcademyofSciences,theNationalAcademyofEngineering,andtheInstituteofMedicine.
TheInstituteofMedicinewascharteredin1970bytheNationalAcademyofSciencestoenlistdistinguishedmembersofappropriateprofessionsintheexaminationofpolicymatterspertainingtothehealthofthepublic.Inthis,theInstituteactsunderboththeAcademy's1863congressionalcharterresponsibilitytobeanadvisertothefederalgovernmentanditsowninitiativeinidentifyingissuesofmedicalcare,research,andeducation.Dr.KennethI.ShineisthepresidentoftheInstituteofMedicine.
ThisstudywassupportedbytheUSDepartmentofDefenseunderContractNumberDASW01-96-K-007.TheviewspresentedarethoseoftheInstituteofMedicineCommitteeontheEvalutionoftheDepartmentofDefenseComprehensiveClinicalEvaluationProgramandarenotnecessarilythoseofthefundingorganization.
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COMMITTEEONTHEEVALUATIONOFTHEDoDCOMPREHENSIVECLINICALEVALUATIONPROGRAM
DanG.Blazer,*Chair,DeanofMedicalEducationandJ.P.GibbonsProfessorofPsychiatry,DukeUniversityMedicalCenter,Durham,NorthCarolina
RebeccaBascom,Director,EnvironmentalResearchFacility,UniversityofMaryland,Baltimore
MargitL.Bleecker,DirectoroftheCenterforOccupationalandEnvironmentalNeurology,Baltimore,Maryland
EvelynJ.Bromet,Professor,DepartmentofPsychiatry,StateUniversityofNewYorkatStonyBrook,StonyBrook,NewYork
GerardN.Burrow,*SpecialAdvisortothePresidentforHealthAffairs,YaleUniversitySchoolofMedicine,NewHaven,Connecticut
HowardKipen,AssociateProfessorandChief,OccupationalHealthDivision,UMDNJ,RobertWoodJohnsonMedicalSchool,Piscataway,NewJersey
AdelA.Mahmoud,*Chairman,DepartmentofMedicine,CaseWesternReserveUniversityandUniversityHospitalsofCleveland,Cleveland,Ohio
RobertS.Pynoos,ProfessorofPsychiatryandDirectoroftheTraumaPsychiatryService,UniversityofCalifornia,LosAngeles,California
GuthrieL.Turner,Jr.,ChiefMedicalConsultant,OfficeofDisabilityDeterminationServices,StateofWashington,Tummwater,Washington
MarkJ.Utell,ProfessorofMedicineandEnvironmentalMedicineandDirector,Pulmonary/CriticalCareandOccupationalMedicine
Divisions,UniversityofRochesterMedicalCenter,Rochester,NewYork
MichaelH.Weisman,Professor,DivisionofRheumatology,DepartmentofMedicine,UniversityofCaliforniaatSanDiego
BoardonHealthPromotionandDiseasePreventionLiaison
ElenaO.Nightingale,*Scholar-in-Residence,InstituteofMedicineandBoardonChildren,YouthandFamilies,Washington,DC
BoardonNeuroscienceandBehavioralHealthLiaison
WilliamE.Bunney,Jr.,*DistinguishedProfessorandDellaMartinChairofPsychiatry,UniversityofCalifornia,Irvine,California
*Member,InstituteofMedicine.
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Staff
LylaM.Hernandez,StudyDirector
SanjayS.Baliga,ResearchAssociate
DonnaM.Livingston,ProjectAssistant
KathleenR.Stratton,Director,DivisionofHealthPromotionandDiseasePrevention
ConstanceM.Pechura,Director,DivisionofNeuroscienceandBehavioralHealth
DonnaD.Thompson,DivisionAssistant
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ContentsEXECUTIVESUMMARY
1INTRODUCTION 11
2OVERVIEWOFTHEINSTITUTEOFMEDICINE'SPERSIANGULFACTIVITIES
15
3THECOMPREHENSIVECLINICALEVALUATIONPROGRAM17
Overview, 17
Signs,Symptoms,andIll-DefinedConditions(SSID), 18
ChronicFatigueSyndrome(CFS)andFibromyalgiaintheCCEPPopulation,
20
StressandPsychiatricDisorders, 21
4IOMREVIEW:DIFFICULT-TO-DIAGNOSEANDILL-DEFINEDCONDITIONS
25
ChronicFatigueSyndrome, 26
Fibromyalgia, 29
MultipleChemicalSensitivity, 31
ControversiesandOverlap, 34
5IOMREVIEW:STRESS,PSYCHIATRICDISORDERS,ANDTHEIRRELATIONSHIPTOPHYSICALSIGNSANDSYMPTOMS
37
StressorsandStress, 37
ConsequencesofStress, 39
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6 CONCLUSIONSANDRECOMMENDATIONS 45
MedicallyUnexplainedSymptomSyndromes, 46
Stress, 47
Screening, 48
ProgramEvaluation, 50
CoordinationwiththeVA, 51
REFERENCESANDSELECTEDBIBLIOGRAPHY 53
APPENDIXES
APresidentialAdvisoryCommitteeonGulfWarVeterans'Illnesses:FinalReportRecommendations
61
BHealthConsequencesofServiceDuringthePersianGulfWar:InitialFindingsandRecommendationsforImmediateAction
67
CHealthConsequencesofServiceDuringthePersianGulfWar:RecommendationsforResearchandInformationSystems
79
DEvaluationoftheU.S.DepartmentofDefensePersianGulfComprehensiveClinicalEvaluationProgram:OverallAssessmentandRecommendations
91
EWorkshopontheAdequacyoftheCCEPforEvaluatingIndividualsPotentiallyExposedtoNerveAgents:AgendaandSpeakersList
109
FAdequacyoftheComprehensiveClinicalEvaluationProgram:NerveAgents
113
GWorkshopAgendasandSpeakersLists 121
WorkshoponDifficult-to-DiagnoseandIll-Defined 121
Conditions,
WorkshoponStressandPsychiatricDisorders, 123
HOutlineoftheCCEPMedicalProtocol 127
I ScreeningInstrumentsforSubstanceAbuse 131
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AdequacyoftheComprehensiveClinicalEvaluationProgramAFocusedAssessment
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ExecutiveSummaryOnAugust2,1990,IraqinvadedKuwait.Within5daystheUnitedStateshadbeguntodeploytroopstothePersianGulfinOperationDesertShield.InJanuary1991,UNcoalitionforcesbeganintenseairattacksagainsttheIraqiforces(OperationDesertStorm),onFebruary24,agroundattackwaslaunchedandwithin4days,Iraqiresistancecrumbled.Almost700,000UStroopsparticipatedinthePersianGulfWar.Followingthefighting,thenumberofUSpersonnelbegantodeclinerapidly.
Mosttroopsreturnedhomeandresumedtheirnormalactivities.Withinarelativelyshorttime,anumberofthosewhohadbeendeployedtothePersianGulfbegantoreporthealthproblemstheybelievedtobeconnectedtotheirdeployment.Theseproblemsincludedthesymptomsoffatigue,memoryloss,severeheadaches,muscleandjointpain,andrashes.
In1992theDepartmentofVeteransAffairs(VA)developedaPersianGulfRegistrytoassistinaddressingquestionsabouthealthconcernsofPersianGulfveterans.Exposures,particularlythoseassociatedwithoilwellfires,wereincludedaspartofthehistorytaking.By1994,withcontinuingconcernaboutpotentialhealthconsequencesofserviceinthePersianGulf,theDepartmentofDefense(DoD)implementedaclinicalevaluationprogramsimilartotheVA'sandnamedittheComprehensiveClinicalEvaluationProgram(CCEP).
Alsoin1994,DoDaskedtheInstituteofMedicine(IOM)toassembleagroupofmedicalandpublichealthexpertstoevaluatetheadequacyoftheCCEP.Thiscommitteeconcludedthatalthoughoverall"theCCEPisacomprehensiveefforttoaddresstheclinicalneedsofthethousandsofactivedutypersonnelwhoservedintheGulfWar,"
specificrecommendedchangesin
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theprotocolwouldhelptoincreaseitsdiagnosticyield.(SeeAppendixDforacompletesetofrecommendations.)
Latein1995,DoDaskedtheIOMtocontinueitsevaluationoftheCCEPwithspecialattentiontotheadequacyoftheprotocolasitrelatedto(1)difficult-to-diagnoseindividualsandthosewithill-definedconditions;(2)thediagnosisandtreatmentofpatientswithstressandpsychiatricconditions;and(3)assessmentofthehealthproblemsofthosewhomayhavebeenexposedtolowlevelsofnerveagents.Itisimportanttonotewhatwasnotincludedinthecommitteecharge.Itwasnotthecommittee'schargetodeterminewhetherornotthereissuchanentity(orentities)as"PersianGulfIllness"norwasitthiscommittee'schargetodeterminewhetherornottherearelong-termhealtheffectsfromlow-levelexposuretonerveagents.Thesequestionsaremoreproperlythesubjectforextensivescientificresearch.
Giventheurgencysurroundingthelastquestionthehealthproblemsofindividualswithpossibleexposuretolowlevelsofnerveagentsthecommitteeaddressedthisissuefirstandseparately,releasingitsreport,AdequacyoftheComprehensiveClinicalEvaluationProgram:NerveAgents,inApril1997.ThecommitteeconcludedthatalthoughtheCCEPcontinuestoprovideanappropriatescreeningapproachtothediagnosisofdisease,certainrefinementswouldenhanceitsvalue.AcompletesetofrecommendationsisfoundinAppendixF.
Tocompletetheremainingportionsofitscharge,thecommitteeconvenedtwoworkshopsontherelevanttopics,heardpresentations,reviewedwrittenmaterial,andreceivedcommentsfromleadingscientificandclinicalexperts,representativesofDoDandtheVA,thePresidentialAdvisoryCommittee,theGeneralAccountingOffice,andrepresentativesofveteransgroups.
AgreatdealoftimeandefforthasbeenexpendedevaluatingDoD's
ComprehensiveClinicalEvaluationProgram.IthasbeenreviewedbythePresident'sAdvisoryCommittee,theGeneralAccountingOffice,theOfficeofTechnologyAssessment,theInstituteofMedicine,andmanyotherorganizations.Asmoreislearned,itbecomeseasiertofocusonthekindsofquestionstheCCEPshouldbeasking.AsDr.PenelopeKeylsaidinherworkshoppresentationonthedevelopmentofgoodscreeninginstruments,progressmadeovertimewillnecessitatenewgenerationsofscreeninginstruments.Thisdoesnotimplythatthefirstinstrumentdevelopedisbad,butratherthattimeleadstonewknowledge,whichleadstotheabilitytoimprovetheinstrument.
SuchisthecasewiththeCCEP.Overtime,theCCEPandotherprogramshavegeneratedinformationthathasincreasedourunderstandingandledustofocusonareasofimportanceforthoseconcernedaboutthehealthconsequencesofPersianGulfdeployment.Thisinformationhasenabledustotakeacloserlook,tomakeamorethoroughexaminationofthesystem,andtoidentifyareasinwhichchangewillbeofbenefit.Thecommitteebelievesthatsuchchangeis
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healthy,thatitreflectsgrowth,andthatitshouldbeanaturalpartofanysystemhavingasoneofitsgoalsthedeliveryofhigh-qualityhealthcareservices.
Changealsooccurswithindividuals.Itmaybethatastimepassesornewinformationisreleased,someofthosewhohavealreadyparticipatedintheCCEPwilldevelopnewconcernsorproblems.ThecommitteehopesthatDoDwillencouragetheseindividualstoreturntotheCCEPforfurtherevaluationanddiagnosisiftheysodesire.
CONCLUSIONSANDRECOMMENDATIONS
MedicallyUnexplainedSymptomSyndromes
Thecommitteespenttimedeliberatingontheprecisemeaningof"difficulttodiagnose"or"illdefined"asadescriptionofacategoryofconditions.Difficulttodiagnoseisgenerallyusedtodescribeaconditionforwhichspecialexpertiseisrequiredtoarriveatadiagnosis,butsomeoftheconditionsunderconsiderationdonotrequiresuchexpertise.Chronicfatiguesyndrome(CFS),fibromyalgia,andmultiplechemicalsensitivityaresymptomcomplexesthathaveagreatdealofoverlapinthesymptomspresentineachcondition.Theyaresymptom-based,withoutobjectivefindings.However,theyareactuallyfairlywelldefinedbyoperationalcriteria,eveniftheyaremedicallyunexplained.Despitethefactthattheyaremedicallyunexplained,theymaycausesignificantimpairment,andtheyareconditionsthatarebetterunderstoodthroughtime(i.e.,adequateevaluationofthesedisordersrequiresalongitudinalperspectivethatincludesknowledgeofpreviousservicesandresponsestotreatment).Thecommitteedecided,therefore,torefertothisspectrumofillnessesasmedicallyunexplainedsymptomsyndromes.Thisspectrumofillnessesmayincludethosewhichareetiologicallyunexplained,lackcurrentlydetectable
pathophysiologicalchanges,and/orcannotcurrentlybediagnosticallylabeled.
Medicallyunexplainedsymptomsyndromesareoftenassociatedwithdepressionandanxiety,yetthisdoesnotimplythatthesyndromesarepsychiatricdisorders.Thereremainsadebateabouthowtodistinguishthesesyndromesfrompsychiatricdiagnoses.However,sincemostoftherecommendedtreatmentsformedicallyunexplainedsymptomsyndromesoverlapwiththepharmacologicalandbehavioraltreatmentsforpsychiatricdiagnoses,thecommitteebelievesthatitisimportanttoidentifyandevaluatethesymptomsassociatedwiththeseconditionsandthentreatthosesymptoms.
Thecommitteerecommendsthatwhenpatientspresentingwithmedicallyunexplainedsymptomsyndromesareevaluated,theprovider
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musthaveaccesstothefullandcompletemedicalrecord,includingprevioususeofservices.
Intheareaofmedicallyunexplainedsymptomsyndromes,itissometimesnotpossibletoarriveatadefinitivediagnosis.Itmaybepossible,however,totreatthepresentingcomplaintsorsymptoms.
Thecommitteerecommendsthatincaseswhereadiagnosiscannotbeidentified,treatmentshouldbetargetedtospecificsymptomsorsyndromes(e.g.,fatigue,pain,depression).
ThecommitteerecommendsthattheCCEPbeencouragedtoidentifypatientsinthisspectrumofillnessesearlyintheprocessoftheirdisease.Inaddition,primarycareprovidersshouldidentifythepatients'functionalimpairmentssoastobeabletosuggesttreatmentsthatwillassistinimprovingthesedisabilities.
Stress
Stressisamajorissueinthelivesofpatientswithinthisspectrumofillness.Stressneednotbelookedatsomuchasacausativeagent,butratherasapartoftheconditionofthepatientthatcannotbeignored.Withmedicallyunexplainedsymptomsyndromes,thepotentialforstressproliferationisgreatamongboththepersondeployedtothePersianGulfandthefamilymembers.
Researchhasshownthatstressorshavebeenassociatedwithmajordepression,substanceabuse,andvariousphysicalhealthproblems.ThosedeployedtotheGulfwereexposedtoavastarrayofdifferentstressorsthatcarrywiththemtheirownpotentialhealthconsequences.Thecurrentcollectionofexposureinformationdoesnotadequatelyaddressaninvestigationoftraumaticeventstowhichthedeployedsoldiermayhavebeenexposed.Inaddition,mediaattentionandreportsbythemilitarytoGulfWarveteransthattoxicexposurecouldhaveoccurredareverystressfulevents.Thestressassociatedwith
thesereportsneedstoberecognizedandaddressed.
ThecommitteerecommendsthattheCCEPcontainquestionsontraumaticeventexposuresinadditiontotheexposureinformationcurrentlybeingcollected.Thiswouldincludetheadditionofopen-endedquestionsthataskthepatienttolisttheeventsthatweremostupsettingtohimorherwhiledeployed.Positiveresponsestoquestionsregardingsuchevents,aswellastootherexposurequestions,shouldbepursuedwithanarrativeinquiry,whichwouldaddresssuchitemsasthespecificnatureoftheexposure;theduration;thefrequencyofrepetition;thedoseor
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intensity(ifappropriate);whetherthepatientwastakingprotectivemeasuresand,ifso,whatthesemeasureswere;andthesymptomsmanifested.
ThecommitteerecommendsthatDoDprovidersacknowledgestressorsasalegitimatebutnotnecessarilysolecauseofphysicalsymptomsandconditions.
Everysoldierwhogoestowarwillbesubjectedtomajordisturbingeventssincewarinvolvesdeathanddestruction.Therearecertainjobsundertakeninthemidstofwarthat,bytheirverynature,resultinhighstress(e.g.,graveregistrationduty).Theeffectofstressassociatedwiththesejobscanbemitigatedifapproachedproperly.Suchefforts,however,requiretimefortheproviderandthepatienttointeract.Itisnotpossibletohandthepatientapamphletoraquestionnaireandexpectthatallnecessaryinformationwillberevealedorunderstood.
ThecommitteerecommendsthatDoDprovidespecialtraininganddebriefingforthosewhoareengagedinhigh-riskjobssuchasjobsassociatedwiththePersianGulfexperience.
ThecommitteerecommendsthatDoDprovidetoeachabout-to-bedeployedsoldier,riskorhazardcommunicationthatiswelldevelopedanddesignedtoprovideinformationregardingwhattheindividualcanexpectandthepotentiallytraumaticeventstowhichheorshemightbeexposed.
ThecommitteerecommendsthatadequatetimemustbeprovidedduringinitialinteractionswithpatientsintheCCEPinordertoinsurethatallpertinentinformationisforthcoming.
Screening
Depressionisaconditionthatiscommoninprimarycare.Mostindividualswhoexperiencedepressioncontinuetofunction,butif
theyareleftuntreated,theirconditionmaydeteriorate.Unlikemanyofthemedicallyunexplainedsymptomsyndromes,thereareacceptedandeffectivetreatmentsfordepression.
Thecommitteerecommendsthattherebeincreasedscreeningattheprimarycarelevelfordepression.
Everyprimarycarephysicianshouldhaveasimplestandardizedscreenfordepression.Ifapatientscoresinthesignificantrange,thispersonshouldbereferredtoaqualifiedmentalhealthprofessionalforfurtherevaluationandtreatment.
Ifdepressionisidentified,therehastobemorequestioningonexposuretotraumaticsituations.
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Thecommitteerecommendsthatanyindividualwhoreportsanysignificantsymptomsofposttraumaticstressdisorder(PTSD)and/orasignificanttraumaticstressorshouldbereferredtoaqualifiedmentalhealthprofessionalforfurtherevaluationandtreatment.
Substanceabuseormisuseproblemsareprevalentinprimarycare.Inaddition,individualsunderstressand/orwithuntreateddepressionormedicallyunexplainedsymptomsyndromesmaybeatincreasedriskforsubstanceabuse.
Thecommitteerecommendsthateveryprimarycarephysicianhaveasimple,standardizedscreenforsubstanceabuse.Everyindividualwhoscreenspositiveshouldbereferredforfurtherevaluationandtreatment.
Therearecertainareasinwhichbaselineassessmentsareofimmensevalueintheclinicalevaluationofanindividualpatient'sstatus(e.g.,pulmonaryfunctionandneurobehavioraltesting).Changesinneurocognitiveandperipheralnervefunctionaremeasuredbycomparingtheindividual'scurrentstatustoabaselinemeasure.Individualbaselineinformationisnecessarybecausethevariabilityacrossindividualsistoogreattoidentifyageneralized''normal"screeninglevel.
ThecommitteerecommendsthatDoDexplorethepossibilityofusingneurobehavioraltestingatentryintothemilitarytodeterminewhetheritisfeasibletousesuchteststopredictchangeinfunctioningortrackchangeinfunctionduringasoldier'smilitarycareer.
ProgramEvaluation
MostpatientsintheCCEPreceiveadiagnosisaftercompletingaPhaseIexamination;somearereferredtoPhaseIIforevaluation;andafewhavegoneontoparticipateintheprogramattheSpecializedCareCenter(SCC).Informationpresentedtothecommitteeindicates
thatthereisgreatvariationacrossregionsinthepercentageofpatientswhoarediagnosedwithprimarypsychiatricdiagnosesandmedicallyunexplainedsymptomsyndromes.Adeterminationshouldbemadeastowhythisvariationexists.Althoughtheremaybemanyreasons,oneexplanationcouldrelatetotheconsistencywithwhichproceduresfordiagnosisandreferralareimplementedfromfacilitytofacility.
Thecommitteerecommendsthatanevaluationbeconductedtoexamine(1)theconsistencywithwhichPhaseIexaminationsareconductedacrossfacilities;(2)thepatternsofreferralfromPhaseItoPhaseII;and
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(3)theadequacyoftreatmentprovidedtocertaincategoriesofpatientswherethereisthepotentialforgreatimpactonpatientoutcomeswheneffectivetreatmentisrendered(e.g.,depression).
TheSCChasprovidedevaluationandtreatmentto78patientssinceitwasbegun.Agreatdealofeffortandthoughthasgoneintothedevelopmentofaprogramdesignedtohelpthepatientunderstandhisorherconditionsandengageinbehaviorsmostlikelytoresultinimprovement.Thecommitteewasaskedtoassesstheeffectivenessofthiscenter,butrealizedthatsuchanassessmentdependedonanumberoffactorsthathavenotbeenwelldefined.Whatisthegoalofthecenterisittreatment,research,oreducation?Shouldamajorconsiderationinthecenter'sevaluationbecost-effectiveness?Shouldthenumbersofthosereceivingcarebetakenintoconsiderationand,ifso,whatarethebarrierstopatientsaccessingthislevelofcare?WhatisthetriageprocessbywhichindividualsgetreferredtotheSCC?
Thecommitteerecommendsthatashort-term(perhaps5-year)planbedevelopedfortheSpecializedCareCenterthatwouldspecifygoalsandexpectedoutcomes.
CoordinationwiththeVA
GiventhatmanynowreceivingservicesintheDoDhealthcaresystemwilleventuallymovetotheVAhealthcaresystem,itisimportantfortheretobegoodcommunicationbetweenDoDandtheVA.Thismaybeparticularlytrueintheareasofmedicallyunexplainedsymptomsyndromesandpsychiatricdisorders,whereaccuratediagnosisand/orassessmentofresponsetotreatmentisimportantforpositivepatientoutcomes.
ThecommitteerecommendsthatDoDexplorewaystoincreasecommunicationwiththeVA,particularlyasitrelatestotheongoingtreatmentofpatients.
BothprovidersandpatientswouldbenefitfromincreasededucationalactivityregardingPersianGulfhealthissues.ProviderturnoverwithinDoDisafactorthatmustbetakenintoconsiderationwhenexaminingthespecialhealthneedsandconcernsofactive-dutypersonnelwhoweredeployedtothePersianGulf.AlthougheffortstoeducateproviderswereextensiveatthetimetheCCEPwasimplemented,3yearshavepassedandmanynewprovidershaveenteredthesystem.Theseindividualsshouldbeorientedtothespecialneeds,concerns,andproceduresinvolved,andallprovidersshouldbeupdatedregularly.
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TheVAhasdevelopedanumberofapproachestoprovidereducationwhichcouldserveasusefulmodels.Interactivesatelliteteleconferencesareavailableformedicalcenterstafftodiscussparticularissuesofconcern.TheVAconductsquarterlynationaltelephoneconferencecalls,directsperiodiceducationalmailingstoPersianGulfRegistryprovidersineachhealthfacility,andconductsanannualconferenceonthehealthconsequencesofPersianGulfservice.
Inadditiontoproviders,thereisagreatneedforeducationofandcommunicationwithindividuals(andtheirfamilies)whoweredeployedtotheGulf.TheseindividualsareconcernedaboutthepotentialimpactofPersianGulfdeploymentontheirhealth,whetherornottheirhealthconcernswillaffecttheirmilitarycareers,theirabilitytoobtainhealthinsuranceoncetheyleavetheservice,andanumberofotherissuesthatneedtobeaddressed.
ThecommitteerecommendsthatDoDexaminetheactivitiesandmaterialsforprovidereducationdevelopedbytheVAtodetermineifsomeoftheitemsmightbeusedaseducationalapproachesforDoDproviders.
ThecommitteerecommendsthatDoDmountaneffortdesignedtoeducateproviderstothefactthatconditionsrelatedtostressarenotnecessarilypsychiatricconditions.Thecommitteerecommendsthatdepressionbeatopicofeducationforallprimarycareproviders,withemphasisonthefactsthatdepressioniscommon,itistreatable,andindividualswhoexperiencedepressioncancontinuetofunction.
ThecommitteerecommendsthatCCEPinformationbeusedtodevelopcasestudiesthatwillhelpeducateprovidersaboutPersianGulfhealthproblems.
ThecommitteerecommendsthatDoDdevelopapproachesto
communicationandeducationthataddresstheconcernsofindividualsdeployedtothePersianGulfandtheirfamilies.
Determiningtheetiology(ies)ofhealthproblemsexperiencedbythosedeployedtothePersianGulfWarmaynotalwaysbepossible.However,itispossiblethattreatmentcanbeprovidedformanyofthesymptomsorconditionsassociatedwithsomeoftheseproblems.Thecommitteewishes,therefore,toemphasizetheimportanceofadequateassessmentofmedicallyunexplainedsymptomsyndromesandoftraumaticeventexposure,aswellasscreeningfordepressionandforsubstanceabuse.SuchadditionstotheCCEPwillenhanceitsabilitytoidentifyand,ultimately,treatthehealthproblemsbeingexperiencedbythosewhoservedinthePersianGulfWar.
Table1providesasummaryofthecommittee'srecommendations.
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TABLE1SummaryofCommitteeRecommendationsTopic RecommendationMedicallyunexplainedsymptomsyndromes
Theproviderevaluatingthesepatientsmusthaveaccesstothecompletemedicalrecordincludingpriortreatment.
Ratherthanattemptingtofitatreatmenttoadiagnosis,treatmentshouldtargetspecificsymptomsorsyndromes(e.g.,pain,fatigue,depression).Apatient'sfunctionalimpairmentsshouldbeidentifiedearlytofacilitatetreatment.
Stress TheinitialCCEPexaminationshouldincludequestionsregardingtraumaticeventexposure.Anypositiveresponseshouldbefollowedupwithanarrativeinquiry.Stressorsmustbeacknowledgedasalegitimatebutnotnecessarilysolecauseofphysicalsymptomsandconditions.DoDshouldprovidespecialtraininganddebriefingforthoseengagedinhigh-riskjobsduringdeployment,e.g.,gravesregistration.DoDshouldprovideriskorhazardcommunicationtoeachabout-to-bedeployedsoldier.Adequatetimemustbeprovidedforprovider/patientinteractionduringCCEPexaminations.
Screening Thereshouldbeincreasedscreeningfordepressionattheprimarycarelevel.Everyphysicianshouldemployasimple,standardizedscreenfordepression(e.g.,BDI,ZungScale,CES-D,IDD).Patientswhoscreenpositivefordepressionshouldbereferredforscreening,furtherevaluation,andtreatment.Patientsdiagnosedwithdepressionshouldbeinterviewedregardingtraumaticexposure.PatientsidentifiedwithanysignificantPTSDsymptomsand/orasignificanttraumaticstressorshouldbereferredtoaqualifiedmentalhealthprofessionalforfurtherevaluationandtreatment.Everyphysicianshouldemployasimplestandardizedscreenforsubstanceabuse(e.g.,CAGE,briefMAST,TACE,TWEAK,
substanceabuse(e.g.,CAGE,briefMAST,TACE,TWEAK,AUDIT).Everypatientwhoscreenspositiveforsubstanceabuseshouldbereferredforfurtherevaluationandtreatment.DoDshouldexplorefeasibilityofneurobehavioraltestingatentryintomilitaryforusefulnessinmeasuringchangeinfunction.
Continued
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TABLE1ContinuedTopic RecommendationProgramevaluation
Anevaluationshouldbeconductedtoexamine:(1)theconsistencyofPhaseIexaminationsacrossfacilities;(2)thepatternsofreferralprogramfromPhaseItoPhaseII;and(3)theadequacyoftreatmentprovidedtocertaincategoriesofpatientswherethepotentialforpositiveimpactisgreat(e.g.,depression).DoDshoulddevelopashort-termplanfortheSpecializedCareCenterthatspecifiesgoalsandexpectedoutcomes.
EducationDoDshouldexplorewaystoincreasecommunicationwiththeVA,particularlyasitrelatestotheongoingtreatmentofpatients.DoDshouldexaminetheprovidereducationmaterialsandprogramsdevelopedbytheVAtodetermineiftheymightserveasmodelsforDoDapproaches.Educationisneededtoemphasizethatconditionsrelatedtostressarenotnecessarilypsychiatricconditions.Educationshouldemphasizethatdepressioniscommonandtreatable,andthatpatientswithdepressioncancontinuetofunction.CCEPinformationshouldbeusedtodevelopcasestudieswhichwillhelpeducateprovidersaboutPersianGulfhealthproblems.DoDeducationaleffortsshouldalsoaddresstheconcernsofPersianGulf-deployedindividualsandtheirfamilies.
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1IntroductionAlargeIraqiforceinvadedtheindependentnationofKuwaitonAugust2,1990.Within5days,inresponsetoUnitedNationsResolution678,theUnitedStatesbegandeployingtroopstothePersianGulfinOperationDesertShield.OnJanuary16,1991,UNcoalitionforcesbeganintenseairattacksagainsttheIraqiforces(OperationDesertStorm).ByFebruary1991,morethan500,000UStroopswerepresentandreadytoengagetheIraqiarmy.AgroundattackwaslaunchedonFebruary24,andwithin4daysIraqiresistancecrumbled.Afterthefighting,thenumberofUStroopsintheareabegantodeclinerapidly.ByJune1991,fewerthan50,000UStroopsremained.
Almost700,000UStroopsparticipatedinOperationsDesertShieldandDesertStorm.ThecompositionofthesetroopsdifferedfromanypreviousUSarmedforce.Overall,theywereolder;alargeproportion(about17%)werefromNationalGuardandReserveunits;andalmost7%ofthetotalforceswerewomen.
TheUScasualtieswerelowduringthePersianGulfWar.Therewere148combatdeaths,withanadditional145deathsduetodiseaseoraccident.Despitethelownumberoffatalitiesandinjuries,servicepersonnelinthePersianGulfwereexposedtoanumberofstressors.Theseincludedenvironmentalfactorssuchasoilsmoke,dieselandjetfuel,solventsandotherpetrochemicals,CARC(chemicalagentresistantcoating)paint,depleteduranium,chemicalwarfareagents,sand,andendemicinfectionssuchasleishmaniasis.Inaddition,somesoldiersweregivenanthraxandbotulinumvaccinesandingestedpyridostigminebromidepillstoprotectagainstchemicalwarfare
agents.
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Otherstressorsincludedtherapidmobilizationformilitaryservice,withanaccompanyingdisruptionofnormalpatterns;theunfamiliarcharacteroftheregionandtherequirementthatUSmilitarypersonnelhavevirtuallynointeractionwiththeindigenouspopulations;theprimitivelivingconditionsofUStroops;andtheimmensedestructionvisitedonthewholenationofIraq.
Afterthewar,mosttroopsreturnedhomeandresumedtheirnormalactivities.Withinarelativelyshorttime,anumberofactive-dutymilitarypersonnelandveteransreportedvarioushealthproblemsthattheybelievedwereconnectedtotheirPersianGulfdeployment.Symptomscommonlydescribedincludefatigue,memoryloss,severeheadaches,muscleandjointpain,andrashes(Schwartsetal.,1997).Asreportsofapurported"PersianGulfillness"circulated,publicconcerngrew.
In1992,theDepartmentofVeteransAffairs(VA)developedandimplementedthePersianGulfRegistrytocreateamechanismfortrackingmedicalandotherdataonPersianGulfveterans.ItwasthoughtthatinformationintheRegistrywouldassistinaddressingquestionsaboutpossiblefutureeffectsofexposuretoairpollutantsandotherenvironmentalagents.Inaddition,thisRegistrywastoserveasthebasisforfuturemedicalsurveillanceofPersianGulfveterans.Exposures,particularlythoseassociatedwiththeoilwellfires,wereincludedaspartofthehistorytaking.
Asconcerncontinuedtoescalate,theDepartmentofDefense(DoD)alsodecidedtodevelopandimplementaPersianGulfclinicalprogram.DoDandtheVAmet,usedexpertstodevelopclinicalprotocols,andby1994,hadimplementedsimilarclinicalevaluationprograms.DoDnameditsprogramtheComprehensiveClinicalEvaluationProgram(CCEP).ThestatedpurposeoftheCCEPistodiagnoseandtreatactive-dutymilitarypersonnelwhohavemedical
complaintsthattheyattributetoserviceintheGulf.
Inadditiontotheclinicalprograms,researchinvestigationswerelaunchedtodiscoverwhetherornotthereissuchanentity(orentities)asPersianGulfillness.OtherexaminationsofPersianGulfissuesandthegovernment'sresponsewereundertakenbytheGeneralAccountingOfficeandtheOfficeofTechnologyAssessment.InMay1995,PresidentClintonannouncedtheestablishmentofaPresidentialAdvisoryCommitteeonGulfWarVeterans'Illnesses.ThisAdvisoryCommitteewaschargedwithanalyzingthegovernment'scoordinationandactivitiesregardingoutreach,medicalcare,research,andchemicalandbiologicalweapons,pertinenttoGulfWarveterans'illnesses.Italsoinvestigatedtheshort-andlong-termhealtheffectsofGulfWarriskfactors.
ThePresidentialAdvisoryCommitteereport,releasedonDecember31,1996,concludedthatitisvitaltocontinuetoprovideclinicalcaretoevaluateandtreattheillnessesthatmanyveteransareclearlyexperiencinginconnectionwiththeirserviceintheGulfWar.TheAdvisoryCommitteedidnot,however,discoveranyresearchorevidencedocumentingacausallinkbetweenanysingle
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factorandthesymptomsreportedbyGulfWarveterans.Althoughseveralrecommendationsweremadeto"fine-tune"thegovernment'sprogramsonGulfWarhealthmatters,theAdvisoryCommitteeconcludedthatonlyintheareaofDoD'seffortsrelatedtochemicalweaponswerethereseriousquestions.ForacompletesetofPresidentialAdvisoryCommitteerecommendations,seeAppendixA.
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2OverviewoftheInstituteofMedicine'sPersianGulfActivitiesTheInstituteofMedicine(IOM)hasundertakenseveralactivitiesfocusingonthepotentialhealthimplicationsofdeploymentinthePersianGulfWarandtheeffortsofDoDandtheVAtorespondtohealthconcerns.TheIOMMedicalFollow-upAgencyconductedaprojectfocusedonthehealthconsequencesofserviceintheGulfanddevelopedrecommendationsforresearchandinformationsystems.Thefirstreportofthisgroup(IOM,1995b)concludedthattherehadbeenafragmentedattempttosolvethehealthproblemsofPersianGulfveteransandthat"sustained,coordinated,andseriouseffortsmustbemadeintheneartermtofocusboththemedical,social,andresearchresponseoftheGovernmentandofindividualsandresearchers."(SeeAppendixBforacompletesetofrecommendations.)ThesecondreportoftheMedicalFollow-upAgency(IOM,1996b)detailed16recommendationswithaccompanyingfindingsconcerningresearchandinformationsystemsneededregardingthehealthconsequencesofserviceduringthePersianGulfWar(AppendixC).
In1994,DoDaskedtheIOMtoassembleagroupofmedicalandpublichealthexpertstoevaluatetheadequacyoftheCCEP.ThefirstcommitteemetfourtimesandpreparedthreereportsbetweenOctober1994andJanuary1996(IOM,1994,1995a,1996a).Thecommitteeconcludedthatalthoughoverall"theCCEPisacomprehensiveefforttoaddresstheclinicalneedsofthethousandsofactive-dutypersonnelwhoservedintheGulfWar,"specificrecommendedchangesintheprotocolwouldhelptoincreaseitsdiagnosticyield.ThecommitteealsoconcludedthattheCCEPisnotappropriateasaresearchtoolbut
thattheresultscouldandshouldbeusedtoeducatePersianGulfveteransandthephysicianscaringforthem,toimprovethemedical
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protocolitself,andtoevaluatepatientoutcomes.AcompletelistofthefirstCCEPcommittee'srecommendationsappearsinAppendixD.
Latein1995,DoDaskedtheIOMtocontinueitsevaluationoftheCCEPwithspecialattentiontothreeissues:(1)difficult-to-diagnoseindividualsandthosewithill-definedconditions;(2)thediagnosisandtreatmentofpatientswithstressandpsychiatricconditions;and(3)assessmentofthehealthproblemsofthosewhomayhavebeenexposedtolowlevelsofnerveagents.ThecommitteewasalsotoconsiderwhethertherearemedicaltestsorconsultationsthatshouldbeaddedsystematicallytotheCCEPtoincreaseitsdiagnosticyield.Anewcommitteewasconvenedtoaddresstheseissues.MostmembersofthenewlyformedcommitteewerealsomembersofthefirstIOMCCEPcommittee.
Indefiningthetasksincludedinthisreview,thecommitteenotedwhatwasnotincludedinitscharge.Itwasnotthiscommittee'schargetodeterminewhetherthereissuchanentity(orentities)asPersianGulfIllness,norwasitthiscommittee'schargetodeterminewhethertherearelong-termhealtheffectsfromlow-levelexposuretonerveagents.Thesequestionsaremoreproperlythesubjectofextensivescientificresearch.
Aseriesofworkshopswasplannedtoobtaininformationonthesetopics.Giventheurgencysurroundingthequestionofhealthproblemsofthosewhomayhavebeenexposedtolowlevelsofnerveagents,DoDaskedthecommitteetoaddressthistopicfirst,separatelyandasrapidlyaspossible.A1-dayworkshopwasheldonDecember3,1996,duringwhichinformationwasgatheredfromleadingresearchersandcliniciansabouttheeffectsofexposuretonerveagentsandchemicallyrelatedcompounds,aswellasabouttestsavailabletomeasurethepotentialhealtheffectsofsuchexposures.(SeeAppendixEfortheworkshopagendaandlistofparticipants.)
Thecommitteereviewedextensiveclinicalandresearchresultsregardingtheeffectsofnerveagents,includingthosepresentedattheworkshopaswellasintheliterature.InitsreportAdequacyoftheComprehensiveClinicalEvaluationProgram:NerveAgents(1997),thecommitteeconcludedthatalthoughtheCCEPcontinuestoprovideanappropriatescreeningapproachtothediagnosisofdisease,certainrefinementswouldenhanceitsvalue.Foracompletesetofrecommendations,seeAppendixF.
Overthecourseoftheproject,thecommitteeheardpresentations,reviewedwrittenmaterial,andreceivedcommentsfromleadingscientificandclinicalexperts;representativesoftheDepartmentofDefenseandtheDepartmentofVeteransAffairs;thePresidentialAdvisoryCommittee;theGeneralAccountingOffice;andrepresentativesofveterans'groups.Thecommitteealsoheldtwopublicworkshops(seeAppendixGforworkshopagendasandparticipantlists).
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3TheComprehensiveClinicalEvaluationProgram*
OVERVIEW
InJune1994,DoDinstitutedtheCCEPtoprovideathorough,systematicclinicalevaluationprogramforthediagnosisandtreatmentofPersianGulfveteransatmilitaryfacilitiesintheUSandoverseas.
TheCCEPwasdesignedto(1)strengthenthecoordinationbetweenDoDandtheVA;(2)streamlinepatientaccesstomedicalcare;(3)makeclinicaldiagnosesinordertotreatpatients;(4)provideastandardized,stagedevaluationandtreatmentprogram;and(5)assesspossibleGulfWar-relatedconditions.(VeteranswhohaveleftmilitaryserviceentirelyareeligibleforevaluationsfromtheVA;personnelstillonactiveduty,intheReserves,orintheNationalGuardmayrequestmedicalevaluationsfromDoD.)PhaseIoftheCCEPconsistsofamedicalhistory,physicalexaminations,andlaboratorytests.Thesearecomparableinscopeandthoroughnesstoanevaluationconductedduringaninpatientinternalmedicinehospitaladmission(seeAppendixH).AllCCEPparticipantsareevaluatedbyaprimarycarephysicianattheirlocalmedicaltreatmentfacilityandreceivespecialtyconsultationsifthesearedeemedappropriatebytheirprimarycarephysician.Evaluationatthisphaseincludesasurveyfornonspecificpatientsymptoms,includingfatigue,jointpain,diarrhea,difficultyconcentrating,memoryandsleepdisturbances,andrashes.
*Thematerialinthissectionisbased,inpart,onpresentationsanddiscussionbyLt.Col.TimCooper,M.D.,MAJCharlesEngel,M.D.,COLKurtKroenke,M.D.,MAJCharlesMagruder,M.D.,andMAJMichaelRoy,M.D.
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TheprimarycarephysicianmayreferpatientstoPhaseIIforfurtherspecialtyconsultationsifheorshedeterminesthatitisclinicallyindicated.ThesePhaseIIevaluationsareconductedataregionalmedicalcenterandconsistoftargeted,symptom-specificexaminations,labtests,andconsultations.Duringthisphase,thepotentialcausesofunexplainedillnessesareassessed,includinginfectiousagents,environmentalexposures,socialandpsychologicalfactors,andvaccinesorotherprotectiveagents.BothPhaseIandPhaseIIareintendedtobethoroughforeachindividualpatientandtobeconsistentamongpatients.
EverymedicaltreatmentfacilityhasadesignatedCCEPphysiciancoordinatorwhoisaboard-certifiedfamilypractitionerorinternalmedicinespecialist.ThecoordinatorisresponsibleforoverseeingboththecomprehensivenessandthequalityofPhaseIexams.Atregionalmedicalcenters,CCEPactivitiesarecoordinatedbyboard-certifiedinternalmedicinespecialistswhoalsooverseeprogramoperationsofthemedicaltreatmentfacilitiesintheirregion.
InMarch1995,DoDestablishedtheSpecializedCareCenteratWalterReedArmyMedicalCentertoprovideadditionalevaluation,treatment,andrehabilitationforpatientswhoaresufferingfromchronicdebilitatingsymptoms.Seventy-eightpatientshavegonethroughtheSpecializedCareProgram,whichconsistsofanintensive3-weekevaluationandtreatmentprotocoldesignedtoimprovetheirhealthstatus.
TheSpecializedCareCenterhasthreeteamsthatoverlap:(1)thephysicalteam(physiatrist,physicaltherapist,occupationaltherapist,fitnesstrainer);(2)themedicalteam(internist,physiatrist,specialists,nutritionist);and(3)thepsychosocialteam(psychologist,socialworker,wellnesscoordinator).Physicaltraining,individualizedtothepatient,isanimportantpartoftheprogram,asiseducation.The
programworkswiththepatientonissuesthatresultindysfunctionorimpairment.Thefocusisnotonthecauseoftheproblems,butratheronhowthepatientcangetbetter.
SIGNS,SYMPTOMS,ANDILL-DEFINEDCONDITIONS(SSID)
TheDepartmentofDefensereportedtothecommitteethatapproximately17%ofthe21,579patientsintheCCEPhadaprimarydiagnosisofSSID,whileabout42%had''anydiagnosis"ofSSID.ThesubcategoriesofSSIDaresymptoms,nonspecificabnormalfindings,andill-definedandunknowncausesofmorbidityandmortality.OfthepatientswithSSID,96.6%(3,591patients)ofthediagnoseswereinthesymptomsubcategory,3%(112)inthenonspecificabnormalfindingsubcategory,and0.4%(16)intheremainingsubcategory(Table3.1).
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TABLE3.1DiagnosesWithintheSymptomGroup(percentage)
SymptomPrimaryDiagnosis
AnyDiagnosis
Fatigue 27 30
Sleepdisturbance 18 24
Headache 14 21
Memoryloss 10 16
Chestpain 5 7
Rash 4 5
DoDreportedthatacomparisonofpatientsinthediagnosticcategoriesofprimarySSID,anySSID,non-SSID,andhealthyfoundessentiallynodifferencesinpercentagesofmalesandfemales,nosignificantagedifferences,andnosignificantethnicdifferences.Forbranchofservice,theMarinesareslightlymorerepresentedinthenon-SSIDpopulation.Inacomparisonofactive-dutyversusreservestatus,theactivedutyareslightlymorelikelytobeinthenon-SSIDdiagnosticcategory,whereasthereservesareslightlymorelikelytobeinanSSIDcategory(Table3.2).
TABLE3.2MostCommonPrimarySSIDDiagnosisbyPhaseofCCEP(percentage)
Symptom PhaseI PhaseII
Fatigue 28 18.0
Sleepdisturbance 17 37.5
Headache 14 17.0
Memoryloss 10 6.5
Chestpain 5 2.5
Chestpain 5 2.5
Rash 4 1.5
Ofthe21,579patientsseeninPhaseI,4,012(18.6%)initiallyreceivedanSSIDdiagnosis.Ofthese,703(17.5%)werereferredtoPhaseII;only239(34%)ofthisgroupcontinuedtobediagnosedwithSSID,whereas464(66%)receivedanalternativediagnosisthatdidnotincludeSSID.About40%ofthesechangedtoaprimarydiagnosiswithinthepsychologicalcategory.However,3,309patientswhoreceivedanSSIDdiagnosisatPhaseIwerenotreferredtoPhaseII.
Ofthe17,567patientswhodidnotreceiveadiagnosisofSSID,1,603werereferredforaPhaseIIexam.Ofthese,171receivedanSSIDdiagnosis,whereas1,432hadnoSSIDdiagnosisassigned.Insummary,DoDreportednodemographicdifferencesbetweenSSIDandnon-SSIDpatients;fatigueisthe
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mostcommonchiefcomplaintinSSIDpatients;jointpainisthemostcommonchiefcomplaintinnon-SSIDpatients;themostcommonprimarySSIDdiagnosisdiffersbyphase;andadiagnosisofprimarySSIDmadeinPhaseIiscommonlychangedinPhaseII.
CHRONICFATIGUESYNDROME(CFS)ANDFIBROMYALGIAINTHECCEPPOPULATION
TheCentersforDiseaseControlandPrevention(CDC)consensusdefinitionforCFSandtheAmericanCollegeofRheumatology(ACR)definitionoffibromyalgiawerecommunicatedtoallmedicaltreatmentfacilitiesinMarch1995.ThoseperformingPhaseIandPhaseIIexaminationswereencouragedtousethesedefinitions.
OfthetotalpopulationseenintheCCEP,12.4%,or3,078,individualsreceivedanydiagnosisoffatigue(ICD-9780.7).Aprimarydiagnosisoffatiguewasgivento4.5%,or1,120individuals.Ofthe1,120individualsreceivingaprimarydiagnosisoffatigue,48(4%)werediagnosedwithCFS,8(1%)withidiopathicchronicfatigue,242(22%)withchronicfatigue,and822(73%)withfatigue.Ifsecondarydiagnosesareincluded,atotalof74individualsreceivedadiagnosisofCFS.Thus,CFSwasdiagnosiedin2.4%ofthepopulationwhoreceivedanydiagnosisoffatiguebutonlyin0.3%ofthetotal24,8231CCEPparticipants.
TheprevalenceofCFSinthegeneralpopulationrangesfrom0.007%to0.037%;inmedicalclinics,from0.13%to0.3%,andinfatigueclinicsitis5.0%.Forfibromyalgia,accordingtotheACRdefinition,ofthe24,823CCEPparticipants,141(0.57%)hadaprimarydiagnosisoffibromyalgiaandanadditional177(0.71%)hadanysecondarydiagnosisoffibromyalgia.Forthetotalnumber(318)ofpatientswitheitheraprimaryorasecondarydiagnosisoffibromyalgia,thenumberofpatientswiththecomorbiddiagnosesareshowninTable3.3.
1IndividualswithinDoDconductedanalysesofCCEPdatabasedoncommitteerequestsforinformation;therefore,theseanalyseswereperformedatdifferenttimes.Asaresult,thetotalnumberofCCEPparticipantsvaried.AnalysisofSSIDwasconductedonatotalCCEPpopulationof21,579patients,whereasanalysisofCFSandfibromyalgiaincluded24,823CCEPparticipants.Sincethecommitteefocusednotonnumbersofcasesbutratherongeneralpatterns,membersdidnotfeelitwasnecessarytoaskforupdatedfigures.
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TABLE3.3NumberofComorbidDiagnosesinPatientswithPrimaryorSecondaryDiagnosisofFibromyalgiaIrritablebowelsyndrome 57(17.9%)Tensionheadaches 44(13.8%)Sleepdisturbances 65(20.4%)Depression 77(24.2%)Posttraumaticstressdisorder 54(17.0%)
Table3.4showsthesymptomsassociatedwithCFSandfibromyalgia.Thefirstcolumnliststhesymptom;theCCEPcolumnreferstothepercentageofCCEPpatientscomplainingofthatsymptom;thefibromyalgiaandCFScolumnsrepresentpercentagesofpatientsdiagnosedwiththeseconditionswhocomplainofthatsymptom.
TABLE3.4PercentageofPatientsDiagnosedwiththeConditionTheyComplainAbout
Sympton CCEP(%) Fibro(%) CFS(%)Difficultyconcentrating 26.8 53.8 59.5Headache 39.6 60.4 55.4Jointpain 51.2 76.4 68.9Memorydeficit 34.6 59.7 62.2Musclepain 21.8 62.3 44.6Sleepdisturbance 33.6 60.7 52.7Abdominalpain 16.4 36.2 28.4Bleedinggums 8.5 18.6 12.2Depression 22.1 46.9 45.9Diarrhea 22.1 46.9 45.9Hairloss 12.5 17.9 14.9Rash 29.9 40.6 50.0Dyspnea 19.2 29.9 32.4
STRESSANDPSYCHIATRICDISORDERS
PatientswhoarereferredtoPhaseIIaremuchmorelikelytoreceivea
PatientswhoarereferredtoPhaseIIaremuchmorelikelytoreceiveapsychologicaldiagnosisthanthosewhoarediagnosedinPhase1.Itisalsothecasethatpsychologicaldiagnosesseemtobemorecommonintheenlistedpopulation.Inlookingattheprevalenceofpsychologicaldiagnoses,whetherprimaryorsecondary,somatoformdisordersaccountfor14.3%andmooddisordersfor12.8%.Theprevalenceofposttraumaticstressdisorder(PTSD)is5.5%;anxietydisorders,3.2%;substanceabuse,4.2%;andotherpsychologicaldiagnoses,8.5%.
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MooddisordersandPTSDarealmostequallylikelytobeprimaryorsecondary,whereassomatoformdisorders,substanceabuse,andotheranxietydisordersaremuchmorelikelytobesecondarydiagnoses.Inexaminingthedistributionofprimarypsychologicaldiagnosesovertime,ithasbeenfoundthatdepressionincreasedfromaboutone-thirdofthediagnosesinthelasthalfof1994toalmost50%oftheprimarypsychologicaldiagnosesinthelasthalfof1996,withthegreatestportionofthisincreaseoccurringinthelast6months.Depressionisalsomorecommonamongolderpatients.
Womenaremorelikelytobediagnosedwithsomatoformandmooddisorders,whereasPTSDandsubstanceabusearemorecommonamongmen.Intermsofdutystatus,mooddisordersandPTSDtendtobemorecommonamongguardsorreservistsandretiredparticipantsthanamongthoseonactiveduty,whereassomatoformdisordersaremorecommonamongtheactive-dutypopulation(Table3.5).
Iftensionheadacheisincludedasasomatoformdisorder,itisbyfarthemostcommonat19.4%ofthe24.6%withaprimarydiagnosisofsomatoformdisorder.Forthosewithaprimarydiagnosisofsubstanceabuse,themostcommondisorderisgenerallyalcoholmisusefollowedbymisuseoftobacco.Anyothersubstanceabuseproblemsweredistinctlyrare,withonly4individuals(0.1%)inthiscategory.
Forthoseinthecategoryofprimaryotherpsychiatricdiagnosis,7.9%areadjustmentdisordersand3.7%organicmentaldisorders(Note:someofthesearereportedasactuallybeingpsychosisduetoalcoholorsubstanceabuse);sleepdisordersrepresent3.2%;schizophreniaorunspecifiedpsychosisamountto0.2%,andotherdisordersconstitute2.5%.
Forthe7,564individualswhoreceivedasecondarypsychiatricdiagnosis,themostcommondiagnosiswassomatoformdisorders(39.2%)followedbymooddisorders(26.9%),substanceabuse
(14.1%),PTSD(11%),anxietydisorders(8.9%),andotherpsychiatricdisorders(22.1%).
Sinceitisimportanttoexaminecomorbidity,patientsintheCCEPhaveacodedprimarydiagnosisanduptosixadditionaldiagnoses.ForCCEPpatientswithaprimarypsychiatricdiagnosis,thecomorbidityofotherdiagnoses(secondtoseventh)arefoundinTable3.6.
Anexaminationofonlytheseconddiagnosisforcomorbiditywithaprimarypsychiatricdiagnosisrevealsthatpsychologicaldisordersarethemostcommonat18.0%,followedbymusculoskeletaldisordersat11.1%,ill-definedconditionsat8.2%,digestivediseasesat6.0%,neurologicaldisordersat4.3%,skindiseasesat3.7%,respiratorydiseasesat2.9%,infectiousdiseasesat1.9%,andneoplasmsat0.6%.
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TABLE3.5DistributionofDiagnosesforthe4,304PatientsReceivingaPrimaryPsychiatricDiagnosisDiagnosis Percentage No.ofPatientsMooddisorders 34.0 1,461Somatoformdisorders 24.4 1,059PTSD 14.9 640Anxietydisorders 5.5 237Substanceabuse 3.5 152Otherdiagnoses 17.5 755
Mooddisorderscanbebrokenintothefollowingcategories:Otherdepressivesyndromes 16.0 715Majordepression 8.9 838Dysthymia 7.4 319Bipolardisorder 0.7 30Othermooddisorders 0.3 14
TABLE3.6ComorbidityofOtherDiagnosesforPatientswithPrimaryPsychiatricDiagnosis
Diagnosis Percentage No.ofPatientsPsychologicaldisorders 40.1 1,735Neurologicaldisorders 17.1 740Musculoskeletaldisorders 48.4 2,091Ill-definedconditions 32.9 1,422Digestivediseases 23.0 995Skindiseases 17.6 762Respiratorydiseases 13.8 596Infectiousdiseases 8.2 356Neoplasms 2.4 104
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4IOMReview:Difficult-to-DiagnoseandIll-DefinedConditions*ThecommitteereviewedinformationonthedevelopmentofscreeninginstrumentsinordertocontributetotheunderstandingandassessmentoftheadequacyoftheCCEPprotocol.Theroleofscreeningintheareaofill-definedconditionsistobeabletoidentifyasubsetofindividualsfromalargergroupwhoclearlyfitadescriptionofinterest.Screeningisnotsynonymouswithdiagnosis.Therefore,thecriteriaforagoodscreeninginstrumentarenotthesameasthecriteriafordiagnosis.
Screeningincludesthesystematiccollectionofinformation.Itdiffersfromasurveyinthatthegoalofasurveyistomakeinferences,whereasthegoalofascreeninginstrumentistoidentifyaparticulargroupofpeople.Itisalsoimportanttonotethatscreeningdoesnottakeplaceunderstaticconditions.Overtime,progressmadeintheunderstandingoftheseconditionswillnecessitatedifferentgenerationsofthescreeninginstrument.Thisdoesnotimplythatthefirstinstrumentdevelopedisbad,butratherthattimeleadstonewknowledge,whichleadstotheabilitytoimprovetheinstrument.
Ascreeninginstrumentshouldbesystematic,quantitative,standardized,andcontaintestsandprocedureswhichthepopulationtobescreenediswillingtoundergo.Theproceduresshouldbespecifiedinadvance,oneshouldbeabletoassignnumericalvaluestononnumericalcharacteristics(e.g.,theseverityof
*Thematerialinthissectionisbased,inpart,uponpresentationsanddiscussionbyDedraS.Buchwald,M.D.,DanielClauw,M.D.,Lt.Col.TimCooper,M.D.,NelsonGantz,M.D.,PenelopeKeyl,M.D.,Howard
Kipen,M.D.,RobertSimms,M.D.,andFrederickWolfe,M.D.
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symptoms),andtheremustbestandardizedquestionsandresponses.Inaddition,agoodscreeninginstrumentdoesnotjustaskaboutthepresenceorabsenceofsymptoms,italsoasksaboutthepresentationofthesymptoms;underwhatcircumstancestheyoccur;andtheirintensity,severity,frequency,andduration(howlongbeforeasymptomresolvesaswellashowlongthepatienthasbeenexperiencingit).
Withthedevelopmentofagoodscreeninginstrument,onecanelicitimportantinformationthatwillhelpidentifyagroupofpatientsaboutwhomonewishestoanswerfurtherquestionsregardingdiagnosisandtreatment.
CHRONICFATIGUESYNDROME
Chronicfatiguesyndromeisaclinicallydefinedconditioncharacterizedbysevere,disablingfatiguethatpersistsforatleast6monthsandhasadefiniteonset.Thesymptomsincludeself-reportedproblemsinconcentration,shorttermmemory,sleepdisturbances,andmusculoskeletalpain.Adiagnosisismadeonlyafteralternativemedicalandpsychiatriccausesoffatiguingillnessareexcluded.Therearenodiagnosticteststhatcanvalidateitsdiagnosis,nopathognomicmedicalcharacteristicthatiscommontoallpatients,andnodefinedtreatmentthatalleviatesthesymptomsforallpatients.AmajorquestionsurroundingdiagnosisofCFSconcernswhetherCFSoranyofitssubsetisapathologicallydiscreteentityasopposedtoadebilitatingbutnonspecificconditionsharedbymanydifferententities.
In1994,theCDCconvenedtheInternationalChronicFatigueSyndromeStudyGrouptodevelopaconceptualframeworkandasetofresearchguidelinesforuseinstudiesofCFS.Thisgroupdevelopedthefollowingcriteriafordefiningchronicfatiguesyndrome(Fukuda
etal.,1994).
Apersoncanbeclassifiedashavingchronicfatiguesyndromeifbothofthefollowingcriteriaaremet:
1.clinicallyevaluated,unexplained,persistent,orrelapsingfatigueofnewordefiniteonsetthatisnotduetoongoingexertion,isnotsubstantiallyrelievedbyrest,andresultsinasubstantialreductioninpreviouslevelsofoccupational,educational,social,orpersonalactivities;and
2.theconcurrentoccurrenceoffourormoreofthefollowingsymptoms,allofwhichmusthavepersistedorrecurredforatleastsixmonths:
impairedshorttermmemoryorconcentrationsevereenoughtocausesubstantialreductioninpreviouslevelsofactivity;
sorethroat;
tendercervicaloraxillarylymphnodes;
musclepain,multijointpainwithoutjointswellingorredness;
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headachesofanewtypeorseverity;
unrefreshingsleep;
postexertionalmalaiselastingmorethan24hours.
TheminimumlaboratoryevaluationofpatientswithsuspectedCFSincludescompletebloodcountwithdifferential;electrolytes,BUN(bloodureanitrogen),creatinine,calcium,glucose,andthyroidfunctiontests;erythrocytesedimentationrate;antinuclearantibodies;andurinalysis.Althoughmanypatientshavesignificantabnormalitiesonroutinelabtests,uniformityofabnormalitiesislacking,andthereforeroutinelaboratorytestscannotbeusedtodeterminewhetherapatienthasCFS.
NosinglecauseofCFShasbeenidentified.OfthepatientsdiagnosedwithCFS,80%ormorereportedthatitstartedwithaviralillness.ManysuspectedagentswerereviewedincludingtheEpstein-Barrvirus,butnonehavebeenfoundtobecausativeforCFS.From60%to70%ofCFSpatientsreportedallergies,comparedto20%ofthegeneralpopulation.Avarietyoftestsindicatedthattheredoesseemtobeheightenedreactivitytoallergensandahigherprevalenceofallergiesinpatientswithchronicfatiguesyndrome.
Sinceallergiesareimmunologicphenomena,scientistsstartedinvestigatingotherpotentialimmunologicalproblems.Findingsincludeddecreasednaturalkillercellnumberandactivity,alteredlymphocytesubsetnumbersandpercentage;andincreasedexpressionofactivationmarkersonlymphocytesubsets.However,noneofthesefindingswasultimatelyfoundtobeadequatelyconsistenttobeusedasadiagnosticmeasure.Otherareasinvestigatedincludedneuroendocrineandmetabolicabnormalities.AlthoughabnormalitiesdoexistinsomepatientswithCFS,thereisdisagreementovertheirrelevance.
Arecenttheoryisoneofdysfunctionoftheautonomicnervoussystem.Someofthesymptomsofchronicfatiguesyndromecanmimicconditionsassociatedwithautonomicdysfunction,forexample,neurallymediatedhypotension.Thisisaconditioninwhichthegeneralsymptomsincludelightheadedness,sweating,abdominaldiscomfort,blurredvision,andthenpresyncopeandfainting.TheTiltTabletestisusedtodiagnoseneurallymediatedhypotension.WhenTiltTabletestingwasappliedinastudybyBouHolaigahetal.(1995),anabnormalresponsetouprighttilt(i.e.,developmentofsyncopeorseverepresyncopewithatleasta25mmHgdecreaseinsystolicbloodpressureandnoassociatedincreaseinheartrate)wasobservedin22of23patientswithCFSversus4of14controls.TheauthorsofthestudyconcludedthatCFSisassociatedwithneurallymediatedhypotensionandthatitssymptomsmaybeimprovedinasubsetofpatientsbytherapydirectedatthisabnormalcardiovascularreflex.
Thereareconditionsthatexplainthepresenceofseverefatigueand,therefore,precludethediagnosisofCFS.Theseincludepastorcurrentpsychiatricconditionsofmajordepressionwithmelancholicorpsychotic
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features;delusionaldisordersofanysubtype;bipolaraffectivedisorder;schizophreniaofanysubtype;dementiasofanytype;anorexianervosa;andbulimia.
ThefollowingcomorbidconditionsdonotexcludeCFS:
Anyconditiondefinedprimarilybysymptomsthatcannotbeconfirmedbydiagnosticlaboratorytests(e.g.,fibromyalgia,anxietydisorders,somatoformdisorders,nonpsychoticornonmelancholicdepression,neurasthenia,panicdisorder,andmultiplechemicalsensitivitydisorder).
Anyconditionunderspecifictreatmentsufficienttoalleviateallsymptomsrelatedtotheconditionforwhichtheadequacyoftreatmenthasbeenwelldocumented(e.g.,hypothyroidisminwhichtheadequacyofreplacementhormonehasbeenverifiedbynormalthyroid-stimulatinghormonelevelsandasthmainwhichtheadequacyoftreatmenthasbeendeterminedbypulmonaryfunctionandothertesting).
Anyconditionthatwaspreviouslytreatedwithdefinitivetherapybeforethedevelopmentofchronicsymptomaticsequelae(e.g.,Lymediseaseorsyphilis).
Anyisolatedandunexplainedphysicalexaminationfindingorlaboratoryorimagingtestabnormalitythatisinsufficienttostronglysuggesttheexistenceofanexclusionaryconditions(e.g.,anelevatedantinuclearantibodytiterthatisinadequatetostronglysupportthediagnosisofadiscreteconnectivetissuedisorderwithoutotherlaboratoryorclinicalevidence,Fukudaetal.,1994).
TheobjectivesoftherapyforCFSaretohelpthepatientdeveloprealisticgoalsandexpectationsthrougheducation,toprovidesymptomaticrelief,andtopreserveandimprovethepatient'sabilitytofunction(FukudaandGantz,1995).Anecessarycomponentofthis
therapyisfortheprovidertoacknowledgethatthepatient'ssufferingisreal.
TherapyforCFSpatientsincludesprovisionofsymptomatictreatmentsuchasmedicationsfordepression,anxiety,pain,sleepproblems,andallergies.Topreventfurtherdisabilityitisimportantforthepatienttoengageingradedexerciseandphysicaltherapy.Cognitivebehavioraltherapy(CBT)isalsousedinanattempttoalterattitudes,perceptions,andbeliefsthatcancontributetomaladaptivebehavior.Patientsneedtoestablishrealisticgoalsformanagingtheirlives,toapplystressreductiontechniques,andtorestructuretheiractivitiestobetteraccommodatetheirneedsandcondition.ThelongerapatienthasbeenillwithCFS,thelesslikelyheorsheistogetbetter.Therefore,earlydiagnosisandtreatmentareextremelyimportant.
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FIBROMYALGIA
Fibromyalgia(FM)isadisorderofwidespreadpain,tenderness,fatigue,sleepdisturbance,andpsychologicaldistress(Wolfeetal.,1995).Additionalclinicalfeaturesmayincludeirritablebowelsyndrome,paresthesias,headache,irritablebladder,somatization,andsocialdysfunction.
ProblemswiththeclassificationanddiagnosisoffibromyalgialedtodevelopmentofthefollowingcriteriabytheAmericanCollegeofRheumatology.
Theremustbeahistoryofwidespreadpain.Painisconsideredwidespreadwhenallofthefollowingarepresent:
painintheleftsideofthebody,painintherightsideofthebody,painabovethewaist,andpainbelowthewaist.
Inaddition,axialskeletonpain(cervicalspineoranteriorchestorthoracicspineorlowback)mustbepresent.Shoulderandbuttockpainisconsideredpainforeachinvolvedside.''Lowback"painisconsideredlowersegmentpain.
Thereispainondigitalpalpationin11ofthe18followingsitesoftenderpoints:
1.Occiput:bilateral,atthesuboccipitalmuscleinsertions.
2.Lowcervical:bilateral,attheanterioraspectsoftheintertransversespacesatC5-C7.
3.Trapezius:bilateral,atthemidpointoftheupperborder.
4.Supraspinatus:bilateral,atorigins,abovethescapularspinenearthemedialborder.
5.Secondrib:bilateral,atthesecondcostochondraljunctions,justlateraltothejunctionsonuppersurfaces.
6.Lateralepicondyle:bilateral,2cmdistaltotheepicondyles.
7.Gluteal:bilateral,inupperouterquadrantsofbuttocksinanteriorfoldofmuscle.
8.Greatertrochanter:bilateral,posteriortothetrochantericprominence.
9.Knee:bilateral,atthemedialfatpadproximaltothejointline.
Fibromyalgiapatientscanbedifferentiatedfromcontrolsbytestingtheirpainthresholdortoleranceanywhereonthebody,notjustontenderpoints(Clauw,1995).Fibromyalgiapatientshaveallodynia,areductioninpainthreshold,aswellashyperalgesia,whichmeansthatthingsthathurtaremore
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hurtful.Patientswithfibromyalgiamayreportpainonlyincertainareas,however,becausethoseareasarethemosttroublesome.Partofthediagnosticprocessmust,therefore,carefullyelicitinformationaboutallpainfulareas.Thismaybeaccomplishedbyusingapaindiagramorbyaskingrepeatedlyaboutvariousbodyregions.
Themajorfeaturedistinguishingfibromyalgiafromotherdisordersistenderness(orsensitivity).Thetwomethodsformeasuringtendernessaredigitalpalpationanddolorimetry.Theamountofforceusedinpalpationisimportantbecausetoolargeaforcewillelicitpaininsomeonewithoutfibromyalgia,whereastoolittleforcemaymisspaininsomeonewithfibromyalgia.Ithasbeensuggestedthatthebestmethodfordeterminingtheamountofpressurerequiredistopalpate"normal"individualsofthesamebuildandstatureasthesuspectedfibromyalgiapatient.Althoughquestionsaboutthevalidityofpalpationcanberaised,studieshaveshownthattrainedexaminerscanreachhighlevelsofagreementintheidentificationofpatientswithandwithoutfibromyalgia(Wolfeetal.,1992).
Dolorimetryisatechniquethatusesarubberendplatewithaspring-loadedforcegauge.Thisgaugeispressedonthetenderpointsite.Asthepressureischanged,patientsareaskedtonotewhentheyfeelachangefrompressuretopain.Althoughdolorimetrywouldappeartobeamorereliableapproachthandigitalpalpationtomeasuringthepainthresholdbecauseiteliminatesexaminervariabilityinboththeamountofpressureusedandtheinterpretationofpatientresponse,dataanalysesindicatethatbothdigitalpalpationandmanualpalpationaremoreaccuratediagnosticapproaches.Thismaybebecausethegaugeispressedononesiteatatime,whereasduringpalpation,theexaminercanfeelaroundfortheexactplacetoexertpressure.Inaddition,therollingmotioninvolvedinfeelingforthecorrectsitemayfindatendernessnotnotedbydirectpressurealone(Wolfe,1994).
Inadditiontopain,thereareothersignsandsymptomscommontopatientswithfibromyalgia.Ina1990ACRstudyofcriteriafortheclassificationoffibromyalgia,81%ofthepatientscomplainedoffatigueand74%complainedofsleepdisturbance.Psychologicalfactorsarealsoimportant.Ofpatientswithfibromyalgia,30%reportthesymptomofdepression(Wolfe,1994).Itisimportanttopointoutthatfibromyalgiacannotbeexplainedsolelyasapsychiatricillnesslikedepression,however.
Familymembersoffibromyalgiapatientshaveahigher-than-expectedrateoffibromyalgia.Inaddition,trauma,eitherphysicaloremotional,mayprecipitateone-thirdofthecasesoffibromyalgia.InfectionssuchasLymediseaseandHIVandconnectivetissuedisorderssuchassystemiclupuserythematosusandrheumatoidarthritisfrequentlycoexistwithfibromyalgia.Aerobicfitnessmaybeapositivemodulatingfactor,thatis,itmaylessenthenegativeeffectsofthecondition(Clauw,1995).
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Manyinvestigatorsnowagreethataberrantcentralnervoussystemmechanismsarelikelytoberesponsibleforthemajorityofclinicalfindingsinfibromyalgia.Acentralnervoussystemgenesisexplainsnotonlythehighincidenceofnonmusculoskeletalsymptomsinawidevarietyoforgansandtissues,butalsotheaffectivedisordersandneurologicalfeatureswhichoccurinthiscondition(Clauw,1995).
Availabletreatmentsforfibromyalgiarangefromconventionalmedicationtherapywithtricyclicantidepressantstononconventionalinterventionssuchasbiofeedback.Itappearsthatthereisshort-termbenefitinthetreatmentoffibromyalgiasyndromewithtricyclicagents,butthishasnotprovedlonglastinginplacebo-controlledtrials.Arelativelysmallproportionofpatients(about25%to30%)havesignificantimprovement.Themajorityhavelittleornoimprovement.
Inadditiontocommonlyusedpharmacologictherapies,patienteducation,reassurance,andanexerciseprogramcaneachplayanimportantroleinrelievingthesymptomsassociatedwiththismusculoskeletalsyndrome.Patienteducationisimportantinassuringpatientsthattheyhaveacommon,nonthreateningcondition.Sucheducationshouldincludeadescriptionofhowthediagnosiswasmade,whattheconditionrepresents,andtheentiretherapeuticplan.Inadditiontoeducation,exercisehasbeenshowntocontributetoimprovementinpainthresholdscores.
Electromyography(EMG)biofeedbackhasbeentestedincontrolledtrialsettings.Ferracciolietal.(1987)conductedacontrolledstudyofbiofeedbackin12patientsandreporteda50%clinicalimprovementin9ofthosepatients,sustainedforsixmonths.Astudyofelectroacupunctureshowedimprovementintheactivetreatmentgroup,butlimitationstothestudyincludenomeasureoffunctionalorpsychologicalstatus,lackofspecificationoftimeoffollow-upassessment,thefactthatpatientsmaynothavebeenoptimally
blinded,andnodeterminationofwhetherelectroacupunctureisequivalenttoacupuncture.
Itappearsthatwhereasthemosteffectiveshort-termtreatmentforfibromyalgiaisantidepressanttherapy,thelong-termefficacyoftreatmentremainselusive.
MULTIPLECHEMICALSENSITIVITY
Multiplechemicalsensitivity(MCS)isadiagnosisgiventopatientswho,inresponsetoachemicalexposurethatistoleratedbymostindividuals,exhibitavarietyofsymptomsthathavenoapparentorganic(orphysiologic)basis.MCSisreportedtoresultfromasingleepisodeorrecurringepisodesofachemicalexposure,suchassolventorpesticidepoisoning,butitalsoariseswithoutreportsofuntowardinitialexposure.Thereisverylittleagreementonwhatthesymptomsrepresent,andnodefinitionhasyetbeenendorsedforclinicaluseby
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abodyofphysicians.TheAmericanMedicalAssociation(AMA)andtheAmericanCollegeofPhysicianshavebothconsideredthegeneraltopicbuthavenotyetrecognizedaspecificdiseaseentityordefinition.
Cullen'sdefinitionofMCS,primarilyforresearchpurposes,appearstobethemostwidelyaccepted.ThedefinitionallowsphysicianstodistinguishMCSfromotherclustersofcommonlyexperiencedsymptoms(Sparksetal.,1994a.Thisdefinitionhasfourcharacteristics:
1.MCSisacquiredinrelationtosomedocumentableenvironmentalexposurethatmayinitiallyhaveproducedademonstrabletoxiceffect.Thisaspectexcludespatientswithlong-standinghealthproblemswholaterattributecertainsymptomstochemicalexposure.
2.Symptomsinvolvemorethanoneorgansystem,andtheyrecurandabateinresponsetopredictableenvironmentalstimuli.
3.Symptomsareelicitedbyexposurestochemicalsthataredemonstrablebutverylow(perhapsseveralstandarddeviationsbelowtheaverageexposuresknowntocausetoxicorirritanthealtheffectsinhumans).
4.ThemanifestationsofMCSaresubjective.Nowidelyavailabletestoforgansystemfunctioncanexplainthesymptoms,andthereisnoobjectiveevidenceoforgansystemdamageordysfunction.Thesyndromemaybeseverelydistressingandfunctionallydisabling,however,becausepatientsincreasinglyattempttoavoidchemicalexposures.
Thechemicalsmostcloselyassociatedwiththemajorityofinitiatingepisodesareorganicsolvents,pesticides,andrespiratoryirritants.Thiscouldbebecauseofthewidespreaduseofthesematerials.Theothercommonsettinginwhichmanycasesarereportedisinbuildingswith
indoorairproblems(Cullen,1997).
Therearemanytheoriesoftheetiologyofmultiplechemicalsensitivity.Oneperspectivehasfocusedontherelationshipbetweenthemucosaeoftheupperrespiratorytractandthelimbicsystem,especiallythelinkageinthenose.MCSpatientstypicallyreportheightenedodorsensitivity.FindingssuggestthatMCSpatientsdonotdetectodorsatlowerthresholdsthanothers,buttheymayrespondmoremarkedlyonceodorsaredetected.Therelationshipofthisfindingtoreportsofinflammatorynasalpathologyandincreasednasalresistanceisunexplored,butthepathologicfindingsrequireconfirmationwithcontrolledstudies.
OthershavesuggestedthatMCSmightberelatedtoadisturbanceoftheimmunesystem.NocontrolledandblindedstudieshavebeenpublisheddemonstratingaconsistentpatternofalterationinimmuneparametersinMCSpatientsafterchemicalexposure(Sparksetal.,1994a).Anotherhypothesisisthatchemicalexposuresproducetoxicfreeradicalsthatcausecellmembranesto
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releaseinflammatorymediators.Noscientificdatahavebeenputforthtosupportthistheory,however(Sparksetal.,1994a).
AnothertheoryisthatpsychologicalmechanismsexplainMCS.IthasbeenproposedthatMCSmaybeamanifestationofthehumanresponsetostressoraconditionedresponsetoaninitialtoxicexperience(Jewett,1992).SomehavehypothesizedthatMCSisalate-liferesponsetoearlychildhoodtraumassuchassexualabuse.SomeinvestigatorsarguethatMCSisamisdiagnosedpsychiatricdiseasesuchasdepression,anxietydisorders,somatizationdisorders,orothercommonpsychiatricdisorders(Sparksetal.,1994a).
Manyscientists,physicians,andothershavepostulatedthatMCSis,inmanyways,abeliefsystempromotedbyclinicalecologistsandthosesympathetictotheirviewsandfollowedbymedicallyunsophisticatedpersons.Aspartofthisscenario,MCSpatientsviewthemselvesasvictimsofexternalanduncontrollablefactors,andtheyrejecttheconceptthatsymptomsarenotindicativeofseverediseaseandmayhavepsychologicalcomponents.Afactorthatmaycontributetothisbeliefsystemistheincreasingconcernofthepublicregardingenvironmentalpollutionandthehealtheffectsofexposuretomanmadechemicals(Sparksetal.,1994a).
AlthoughagreatdealofliteraturecanbefoundonthepathogenesisofMCS,thereislittleclinicalorexperimentalevidencethatsupportsstronglyanyoftheviewsputforth.TheavailableevidenceshowsthatpatientsdiagnosedwithMCSareveryheterogeneousandthatparticularhealthbeliefmodels,concurrentpsychiatricillness,andpsychologicstresscharacterizeavulnerablegroupofpeoplewhothendevelopasensitivitytoodorsorlow-levelchemicalirritants(Sparksetal.,1994b).Despitethelackofagreementonetiology,clinicianscanstillhelpaffectedpatientswiththeirsymptoms.
TherearenolaboratoryfindingsthatarecharacteristicofMCS.To
considerthisdiagnosis,onemusttakeahistoryandelicitboththesymptomsandthefactthattheywaxandwanewithexposuretorealagentsthataretoleratedbymostpeople.Diagnostictestingisdoneprimarilytoruleoutotherillnessinthedifferentialdiagnosis.DiagnosticevaluationofthesuspectedMCSpatientincludesthefollowing:
A.History
Detailedexposurehistory(workplaceandotherenvironmentalexposures)
Industrialhygienedata(MaterialSafetyDataSheets,resultsofexposuremonitoring,etc.)
Currentandpastmedicalillnessesandresultsofpreviousdiagnosticwork-upsandtreatments
Reviewofpriormedicalrecords
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B.Physicalexaminationtoruleoutotherillnessesinthedifferentialdiagnosis
C.Consultation
Occupationalandenvironmentalmedicinespecialist
Psychiatrist
Otherspecialistsasappropriatetoruleoutothermedicalconditionsinthedifferentialdiagnosis
D.Other
Symptomdiary(thiscancausepeopletobeoverlyfocusedonthingstheymightotherwiseignore)
Short-termremovalfromexposure
Thefocusoftreatmentistoacknowledgethatthesymptomsarerealanddistressingevenifthereisnoevidenceofobservableorganicpathology.Thegoaloftherapyisthecontrolofsymptoms.Successdependsonthepatient'simprovedunderstandingoftherolestressplaysinexacerbatingsymptomsandontheacquisitionofskillsforcopingwiththeimpactoftheillnessondailylife(Sparksetal.,1994b).Treatmentshouldbeindividualizedbutshouldincludeenhancingthepatient'ssenseofcontroloverworkplaceorhomestressors.Approachestoreducingstresshaveincludedmassage,physicaltherapy,meditation,orregularexercise.ThepatientshouldbereassuredthatMCSisnotfatalandisnotassociatedwithsignsofprogressivedisease.
Arecommendationforcompleteavoidanceofchemicalexposuresisnotindicatedbecausethereisnoevidenceforacumulativetoxicinjuryanditisimpossibletoaccomplish.Treatmentcouldalsoincludemedicationtocontrolsymptoms,anincreaseinphysicaland
socialactivity,andtreatmentofothercoexistingmedicalillnesses.Itisveryimportanttotreatcoexistingpsychiatricmanifestationssuchasdepressionandpanicattacks.Suchtreatmentsmaybehelpfulincontrollingsymptomsnomatterwhattheetiology.
CONTROVERSIESANDOVERLAP
PatientswithCFS,fibromyalgia,andMCShavemanysymptomsincommon.Accordingtosomeinvestigations,theseconditionsmayrepresentoverlappingclinicalsyndromes.InastudybyBuchwaldandGarrity(1994),itwasfoundthat70%ofpatientswithfibromyalgiaand30%ofthosewithMCSmetthecriteriaforCFS.AstudybyHudsonetal.foundthat42%offibromyalgiapatientshavemetthecriteriaforCFS(1992),andresearchconductedbyWysenbeeketal.(1991)foundthat21%ofFMpatientsmetCFS
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criteria.Goldenbergetal.(1990)foundthat70%ofpatientsdiagnosedashavingCFSmettheACRcriteriaforfibromyalgia.
ThereareotherdisordersthatoverlapwithCFS.ForpatientswithTMD,ortemporomandibulardisorder(alsoknownasTMJarthritis),almost60%havetheCFSsymptomoffatigueformorethansixmonths(BuchwaldandGarrity,etal.,1994)and30%meetthesecondpartofthedefinition,whichisreducedactivity.AnotheroverlappingsyndromeonwhichlittlehasbeenpublishedisSjögren'ssyndrome,anautoimmunedisorder.Onestudy(Calabreseetal.,1994)producedresultsthatseemedtoindicatetherewasasubsetofCFSpatientswhohaveaSjögren's-likesyndrome,withdryeyes,drymouth,andatleastsomeofthelaboratoryabnormalitiesseeninSjögren'ssyndrome.
Thecardinalfeaturesoftheseillnessesarechronicregionalorchronicwidespreadpainintheabsenceofnociceptiveinput,fatigue,anddysfunctionofvisceralorgansorsensoryamplification.Individualswhohavemultiplechemicalsensitivity,forexample,sometimesfindthattheyaresensitivetomanykindsofsensoryinputsuchasbrightlightsandloudnoises.Therefore,ifonedefinesagroupofindividualsinthepopulationthathasahighdegreeofpainorthathasahighdegreeoffatigueoranyofthesesymptoms,manyoftheindividualswillalsohaveanumberofothersymptoms.However,itisdifficulttodefinethedegreeofpainortoratethepainastointensity.
Fatigueislikewiseaproblem.Accuratetoolstoquantifyfatiguehaveyettobedevelopedandaccepted.Thereforeitisdifficulttodefineapathologicaldegreeoffatigue.Anywhereonedecidestodrawthelineresultsinanarbitrarydistinction.Theminorsymptoms(headaches,constipation,etc.)arealsoproblematic.Anumberofpopulation-basedstudieshaveshownthatthemoreofthesesymptomsindividualshave,themorelikelytheyaretohavepsychologicalorpsychiatriccomorbidities.
Whateverdiagnosticlabelisarrivedat,patientsinthisspectrumofillnesswillhaveahigherthannormalincidenceofthingssuchastensionandmigraineheadaches,affectivedisorders,TMD,irritablebowelsyndrome,andsoon.Fibromyalgiaisadiagnosiswhichdefinesanextremeofpainandtendernessexperiencedby3%to4%ofthegeneralpopulation.CFSdefinesasmallerpercentageofthepopulationthatismostfatigued.Inreality,fatigueandpainortendernessinthepopulationoccuronacontinuum.Whatisseenforallofthesedifferentsymptomsisthattheyoccuroverawidecontinuuminthepopulationandthatcurrentdefinitionsattempttodrawalinesomewhereandsaythatonesideofthelinerepresentsillnessandtheother,wellness.
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5IOMReview:Stress,PsychiatricDisorders,andTheirRelationshiptoPhysicalSignsandSymptoms*InMay1997,thecommitteeconvenedaworkshopofresearchandclinicalexpertsintheareasofstress(includingmilitarystress),theeffectsofstressontheendocrineandimmunesystems,substanceabuse,posttraumaticstressdisorder(PTSD),depression,andsubthresholddepression.PresentationswerefocusedonprovidingthelatestinformationintheseareasthatcouldassistthecommitteeinitsreviewoftheadequacyoftheComprehensiveClinicalEvaluationProgramindiagnosingstressandpsychiatricdisordersandindeterminingwhetherornoteffectivetreatmentsexistedfortheseconditions.
STRESSORSANDSTRESS
Asdiscussedearlier,individualsdeployedtothePersianGulfwereexposedtoanumberofstressors.Thetermstressorsgenerallyreferstotheexternalcircumstancesthatchallengeorobstructanindividual.Stress,ontheotherhand,isthestateofarousalresultingfromthepresenceofsocioenvironmentaldemandsthattaxtheordinaryadaptivecapacityoftheindividual.Productionofstressisanenvironmentpersoninteractionandisinfluencedbysuchcharacteristicsasneeds,values,perceivedabilitytorespond,andcopingskills.
*Thematerialinthissectionisbased,inpart,onpresentationsbyHagopAkiskal,M.D.,CarolAneshensel,Ph.D.,FirdausDhabhar,Ph.D.,MAJCharlesEngel,M.D.,DavidFoy,Ph.D.,WalterLing,M.D.,MAJMichaelRoy,M.D.,andJohnD.Wynn,M.D.
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Therearetwobroadtypesofstressors:(1)eventfulchangesthathaveadiscreteonsetandadiscretecessationand(2)chronicstressorsthatemergefromongoingsituationsuntilitbecomesapparentthatthereisaproblem.Mostchronicstressorsarerelatedtotheongoingnatureofsocialorganizationandsocialroles.Otherchronicstressorsincludedailyhassles(e.g.,aslowdownonthefreeway)andambientstressors(e.g.,deterioratingaspectsofaneighborhood).
Lifeeventstressorsrefertoobjectivechangesinlifecircumstancesthatareofsufficientmagnitudetochangeaperson'susualactivities(e.g.,acutephysicalillness).Thesecanbeexpectedtooccurthroughoutthelifecourse,anditistheundesirableeventsthatarestressfulforpeople.
Stressproliferationreferstothenotionthataparticularstressfulcircumstanceisusuallynotconfinedinaperson'slifebuttendstospreadoutandcreateadditionalproblemsinotherareasoflife(i.e.,aprimarystressormayproduceasecondarystressor).Primarystressorsareprimaryinthesensethattheyaretherootoriginofaseriesofotherproblematiclifecircumstancescalledsecondarystressors.Thesesecondarystressorsarenotnecessarilysecondaryintheirpotencyandrefertothespilloveroftheprimarystressorintootheraspectsofaperson'slife(e.g.,interferencewithjob,disruptionofrelationshipswithfamilyandfriends,constrictionofsocialactivities).
Fortraumaticevents,ifsecondaryadversitiesorotherstressorsarise,theeffectsmaybeadditive,thatis,theymayproliferate.
Oncetheseadditionalorsecondarystressorshavebeencreated,theythenserveasanindependentsourceofstress.Stressmayproliferatefortheindividualwhoistheprimarytargetofinterestandalsoforthefamilyandfriendsofthatindividual.
Ingeneral,thedurationofanexposureisrelatedtotheeffectsof
stress.Themorelongtermtheexposure,themorelongtermaretheeffects.Inaddition,justbecauseapersonisremovedfromastressfullifecircumstance,theeffectsofhavingbeeninthatconditionorcircumstancepersist,eventhoughthestressorisabsent.
TheGulfWarhadmanyverystressfulexperiences,despitethefactthatitwasamilitarysuccess.ThereweremanymonthsleadinguptothewarinwhichtheUStroopswereuncertainaboutthestrengthofIraqitroops,whetherchemicalorbiologicalweaponswouldbeused,andwhethertheywouldbeinjuredorkilledintheengagement.Inaddition,troopswererapidlyandunexpectedlydeployed,separatedfromfamilyandfriends,facedwithaharshdesertenvironmentandenvironmentalhazards,andexposedtoadirectlifethreat;theyalsowitnesseddeathanddestruction.
WhenindividualsdeployedtotheGulfreturnedhome,itwasassumedthatsincethewaritselfwasbriefandtheleveloflossofUSliveswaslow,problemsassociatedwiththewarwouldbefew.TheDepartmentofVeteransAffairsdiddevelopaPersianGulfRegistryasameansofaddressingquestionsabout
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possiblefutureeffectsofairpollutantexposureandotherenvironmentalagents,particularlythoseassociatedwiththeoilwellfires.However,astimepassed,itbecameapparentthattherewereconcernsaboutanumberofexposureissues.
Informationonexposuresandtheirhealthconsequenceswascontradictoryand,assuch,potentiallyworsenedthealreadystressfulsituationbymakingitambiguous.Becausetheperceptionthatonehassomethingwrongwithone'sbodyisitselfasourceofstress,theveryvaguenesssurroundingtheinformationthatwasforthcomingaboutagentstowhichonewasexposedandthelackofknowledgeofhealthconsequencesofsuchexposureshaveexacerbatedtheimpactofthestressassociatedwithhealthcomplaints.
Indeterminingthenegativeeffectscreatedbyexposuretostress,itisnecessarytolookbeyondtheoneprimarystressortothecreationofproblemsinotherareasofaperson'slifeand,additionally,inthelivesofpeoplewithwhomheorsheisincloseassociation.
CONSEQUENCESOFSTRESS
Researchhasshownthatstressorshavebeenassociatedwithmajordepression,symptomsofdepressionandanxiety,alcoholabuseanddependence,andsubstanceabuseanddependence.Manyoftheseconditionsareundiagnosedinprimarycarepopulationsforanumberofreasonsincludingthetrainingandexperienceoftheexaminer,thetimepressureforcompletingexaminations,stigmatizationandsocialattitudes,andthemisperceptionthattreatmentdoesnotwork.
Depression
Thediagnosisofdepressionintheprimarycaresettingisfrequentlymissed,andwhenproperlydiagnosed,depressionisofteninadequatelytreated.A4yearlongitudinalstudyofmedicaloutcomes
wasbeguninthelate1980sandinvolvedmorethan20,000patientsinthreecenters(Boston,LosAngeles,andChicago)anddifferentfinancingsystems.Generalmedicalclinicianssaw364patientsandwereawarethatthefocusofthestudywasdepression.Despitethisfact,theseprimarycarephysiciansmissedthediagnosisofdepression50%ofthetime(WellsandBurnham,1991).
Ofthepatientsfoundbyscreeningduringtheprimarycarevisittohaveamajorongoingdepression,59%receivednomedicationandwerenotinpsychotherapy.Ofthosewhoreceivedmedication,19%receivedonlyaminortranquilizer,and12%onlyanantidepressant,andoftheonesreceivingantidepressants,39%receivedhomeopathicdoses.Theunderdiagnosis,then,wascompoundedbyundertreatment.
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Tofacilitatethetaskofdiagnosingmentaldisorders,primarycareprovidersmustbecomefamiliarwithdiagnosticcategories,historicalfeatures,andinterviewtechniques.
Therearethreediagnosticcategoriesofmajormentaldisorders:(1)mooddisorders,(2)anxietydisorders,and(3)psychoticdisorders.Amooddisorderisadiagnosisestablishedonthebasisofarecurrentpatternofmoodepisodes.Moodepisodesareagroupofsignsandsymptomsthatco-occurforaminimaldurationoftime.Theycanbepartofamooddisorder,apsychoticdisorder,orageneralmedicaldisorder.Kindsofmoodepisodesincludemajordepressive,manic,mixed,andhypomanic.
Toidentifyamajordepressiveepisode,onelooksforeitherapersistentdepressedmoodthatoccurseverydayormostofthedayandlastsatleasttwoweeks,ordiminishedinterestorpleasureinalloralmostallactivitiesandfiveofthefollowing:significantweightlossorchangeinappetite;insomniaorhypersomnianearlyeveryday;psychomotorretardationoragitation(observable);fatigueorlossofenergy;feelingsofworthlessnessorexcessive(orinappropriate)guilt;diminishedabilitytothink,concentrate,ormakedecisions;recurrentthoughtsofdeathorsuicide,orasuicideattempt.
Amanicepisodeincludesadistinctperiodofabnormallyandpersistentlyelevated,expansive,orirritablemoodnecessitatinghospitalizationorlastingatleastoneweekandthreeormoreofthefollowing:inflatedself-esteemorgrandiosity;decreasedneedforsleep;greatertalkativenessthanusualorpressuretokeeptalking;flightofideasorracingthoughts;distractibility;orriskymeasurableactivitiesorendangerment.
Therearedifferentkindsofmania.Thedysphoricormixedepisodeisacombinationofmaniaanddepression,characterizedbymarkedimpairment.Thehypomanicepisodeisnotsevereenoughtoshow
impairmentinsocialoroccupationalfunctioningortonecessitatehospitalization,andtherearenopsychoticfeatures.
Thelanguageofepisodescanbetranslatedintothelanguageoftheprimarycareclinician.Anepisodeisasyndrome(i.e.,acollectionofsignsandsymptoms).Syndromesleadtoclinicalevaluation;todifferentialdiagnosis,andultimately,toclinicaldiagnosis,prognosis,andtreatment.Disordersarediagnoses.
Mooddisordersaredividedintodepressivedisordersandbipolardisorders.Thedepressivedisordersincludemajordepression(oneormoremajordepressiveepisodes),minordepression(sadnessand/oranhedonia,atleastonemoresymptomofmajordepression,andtwoweeksimpairmentand/ordistress),anddysthymia(2yearsormoreofadepressedmoodfor''moredaysthannot,"twoormoreneurovegetativesymptoms,andhasnevermetcriteriaformajordepressiveepisode).
Depressionisfurtherdividedintomelancholic,chronic,andothertypes.Melancholicdepressionsoftendonotrespondwelltotreatment,andresultin
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decreasingactivityandmarkedsleepdisturbanceswithaworseprognosis.Thechronictypeofdepressionlastsatleast2yearsinarowwithoutanyremissionofmorethan2months,andlaterinterventionresultsinslowerrecovery.Thisisnotdysthmia.
Misdiagnosisisoftentoduetothefactthatthereisanoverlapinthesignsandsymptomsofdepressionwithmanymedicalconditions.Acommonerrorbeginswiththeidea,"Wellwouldn'tyoubedepressedifyouweresosick?"Inaddition,theclinicalpresentationofdepressionincludesconfusingorambiguous(non-mood)complaintssuchaspervasiveboredom,decreasedenergy,insomnia,andfatigue.Anotherpresentationisirritability.Patientsmaysaytheyfeelsadallthetime-ordepressed,hopeless,pessimistic,orblue.Therearesomepatientswhoseekcarebecausetheyhavevagueornonspecificphysicalcomplaintssuchasfatigue,lossofenergy,sleepdifficulties,orunexplainedsomaticsymptoms.
Anumberofinstrumentscanbeusedtoscreenfordepression.TheseincludetheBeckDepressionInventory,theZungSelf-ratingDepressionScale(SDS),theCenterforEpidemiologicalStudies-DepressionScale(CES-D),andtheInventorytoDiagnoseDepression(IDD).Whenindoubtaboutadiagnosisofanymentaldisorder,aphysicianshouldscheduleearlyfollow-uptoconfirmordenythediagnosisandtoletthepatientknowthatthephysicianisconcerned.Ithasbeenshownthatasmanyas15%ofpatientswithinadequatelytreateddepressionkillthemselves.
Indiagnosingdepressioninprimarycare,itisimportanttoscreenpopulationsatelevatedrisk,toincreasetheclinicalsensitivityofprimarycareproviders,toensurethatthereisadequatetimetoperformtheevaluation,toremovebarrierstospecialtycare,toencouragemultidisciplinarymanagement,toassesscomorbidity,andtoovercomestereotypes.
PosttraumaticStressDisorder
Posttraumaticstressdisorder(PTSD)appearedasanofficialdiagnosisintheAmericanPsychiatricAssociation's1980publicationoftheDiagnosticandStatisticalManualofMentalDisorders(DSM-III).PTSDwasrecognizedasanewdisorder,linkedtoexternalstressorsthatareoverwhelmingandextreme.PTSDhasbeenfoundtobefrequentinveteransofmilitarycombatandrepresentsanimportantconcerninprovidingcaretotheveteranpopulation.IntheNationalVietnamVeteransReadjustmentStudy,investigatorsfoundthatanestimated15.2%ofallmaleVietnamWartheaterveterans(about479,000Americanmen)metthecriteriaforcurrentPTSDatthetimethedatawerecompiled(RundellandUrsano,1996).AstudybySouthwicketal.(1995)foundthatina2-yearfollow-uptoastudyofPersianGulfveteransconducted6monthsafterthewar'send,"althoughsymptomswererelativelymild,therewas
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anoverallincreaseinPTSDsymptomsat2years,andnotbefore."Theygoontosuggestthatitmaytaketimefortheconsequencesoftraumaticexposuretobecomeapparent.
TherequiredfeaturesofPTSDareatraumaticeventthatprecipitatessymptomsofacrisisreactionintheindividual(i.e.,theindividualwasoverwhelmedphysiologicallyandshowedsignsofextremehorror,helplessness,orgrief,inthecaseofatragicloss).ThisisfrequentlyreferredtoasCriterionA.Otherrequiredfeaturesarethatthetraumabereexperiencedindreamsorthoughtsorthatitbereenacted,thattherebeanumbingofresponsiveness,andthatatleasttwoofthefollowingsymptomsoccur:hyperalertness(exaggeratedstartleresponse),sleepdisturbance,guilt,troubleconcentrating,avoidanceofactivitiespromptingrecalloftheoriginalevent,andworseningofsymptomsbyexposuretoeventsresemblingtheoriginalevent(Helzeretal.,1987).
ForprovidersnotexperiencedinthediagnosisofPTSD,themostcommonerroristomaketheassumptionthattheonlyrequirementforsatisfyingCriterionAistodeterminewhethertheindividualpersonallyexperiencedatraumaticevent(e.g.,servedinahostilefirezone).However,theprovidermustgobeyondthistoelicittheindividual'sresponsetothetrauma(i.e.,theextenttowhichheorsheexperiencedreactionssuchasintensefear,helplessness,andhorror).
Althoughdirectexposureisprobablythemostpotent,observationalexperiences(e.g.,observinghorrificthingshappeningtoothers)cannotbedisregardedastraumaticevents.Vicariousexposure,especiallyinthecaseofclosesocialdistancetothevictim,isalsocapableofproducingPTSDsymptoms.
Ithasbeenwelldocumentedfrombothclinicalandepidemiologicaldatathatcombat-relatedPTSDisfrequentlyassociatedwithotherpsychiatricmorbidity,andithasbeensuggestedthatalcoholand
substanceusehavearoleinprecipitatinganxietyandmood-relatedsymptoms(Mellmanetal.,1992).Inaddition,individualswithPTSDareatriskfordevelopingsecondaryaffective,alcoholandsubstanceabuse,aswellaspanicandphobicdisorders.TreatmentofthesecomorbidconditionsisessentialtothemanagementofPTSD(Marmaretal.,1993).AccordingtoMarmaretal.,theseverityandcourseofPTSDareinfluencedbytheinteractionofthetraumaticstressexposurewithabackgroundofindividualpsychologicalandbiologicalvulnerability.
SubstanceAbuse
Substanceabuseproblemsarefairlyprevalentinprimarycare.About20%to30%ofpatientswhovisitprimarycarephysiciansdosoforproblemsthatrelateinsomewaytosubstanceabuseormisuse.Substanceabuseresultsfromaddiction,whichisadiseaseprocesscharacterizedbythecompulsiveuseofa
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specificpsychoactivesubstance.Anindividualengagesinasetofbehaviorsregardingthesubstancethatcanleadtoadependencedisorderoranabusedisorder.
Intermsofsubstanceabuse,theroleoftheprimarycarephysicianistwofold.First,theprimarycarephysicianmustassessandtreatthemedicalproblemsrelatedtosubstanceabuse.Thereare,forexample,anumberofmedicaldiseasesrelatedtoparenteraldrugusesuchasendocarditis,acutehepatitis,cirrhosis,bleedingulcers,pancreatitis,stroke,seizures,amnesia,dementia,andcertaincardiovascularandpulmonarydiseases,aswellasoverdose,trauma,andhormonalabnormalities.Medicalproblemsthatresultfromalcoholabuseincludeneurologicalproblems,liverdisease,pancreaticdisease,andhematologicdiseases.Thereisalsoagreatdealofcomorbiditybetweensubstanceabuseandpsychiatricdisorderssuchasschizophrenia,affectivedisorders,anxietydisorders,andantisocialpersonalitydisorders.
Thesecondmajorresponsibilityoftheprimarycarephysicianistoconductsubstanceabusescreening.Ifapatientpresentswithamedicalproblemrelatedtosubstanceabuse,theprimarycarephysicianshouldscreenforabuseasacauseoftheproblem.Averyimportantcomponentofthisscreeningistodeterminetheseverityoftheproblemandtheriskofcomplications.Toconducteffectivescreening,thephysicianmustinterviewthepatientconcerninghisorhergeneralhealthhabits,dietandexercise,useofprescriptions,useofover-thecounterandhomeremedies,smoking,drinking,anduseofmarijuanaandotherdrugs.Inaddition,theprimarycarephysicianshoulduseoneofthesubstanceabusescreeninginstruments(e.g.,CAGE,MAST/DAST,AUDIT,HSS,andtheT-ACE/TWEAK;seeAppendixIforcopiesoftheinstruments).
OtherConsequences
Stresshasalsobeenassociatedwithvariousphysicalhealthproblems,particularlyimmunesystemfunctioning.AstudybyCohenetal.(1991)showedthatforindividualsinoculatedwithacoldvirus(rhinovirustype2,9,or14,respiratorysyncytialviruses,orcoronavirustype229E),therewasanincreasedinfectionrateinthosewhoreportedahighlevelofrecentstress.AccordingtoworkconductedrecentlyatRockefellerUniversity,itappearsthatmoderatestress(i.e.,stressthatiscircumscribedbothinitsphysicaldurationanditsperception),maintainedinahealthyindividual,seemstoenhancecellmediatedimmunity.Thereisalsoevidencethatitmightenhancehumoralorantibody-dependentimmunity.However,chronicstressdisruptsequilibriumanddecreasescellmediatedimmunity(Dhabharpresentation,1997).
Thereareotherpotentialconsequencesofstressforhealthoutcomes,forexample,theeffectsofstressonhealthbehavior.Somebehaviorsmayproducepositiveeffects(e.g.,runningasacopingmechanism),whereasmanyare
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unhealthy(e.g.,smoking,drinking,overeating).Stressexertsanindirecteffectonhealthviathesekindsofbehaviors.
Therearealsostresseffectsonillnessbehavior,thatis,whatapersondoeswhoperceiveshimorherselfashavingsomesortofsickness.Ithasbeenacceptedformanyyearsthatpersonswhoengageincertaintypesofstressfulbehaviorareathigherriskofdevelopingcoronaryheartdisease(Williams,1995).Lesswellknownisthefactthatthosewhosufferfromclinicaldepressionexperiencea5-foldhighermortalityfollowingmyocardialinfarctionthannondepressedpatients.
AccordingtoChrousosandGold(1992),astresssystemwithinthebodyproducespathophysiologicstatesthatcanmakeapersonvulnerabletoarangeofdisorders,includingendocrine,inflammatory,andpsychiatricdisorders.Ithasalsobeenshownthatjobsthatplacehighdemandsonaworkerwhileallowinglittlelatitudeindecidinghowthedemandsaremetcreatehighjobstrain.Employmentinhigh-strainjobshasbeenassociatedwithincreasedambulatorybloodpressurelevels(Schnalletal.,1992).
FriedmanandSchnurr(1995)conductedareviewoftheliteratureonphysicalhealthoutcomesassociatedwithtraumaticeventsincludingexposuretoawarzone,sexualorothercriminalvictimization,naturalorhuman-madedisasters,andseriousaccidents.Theyconcludedthat"thetraumaandhealthliteratureisimpressivefortheconsistencyofresultsshowingthatexposuretocatastrophicstressisassociatedwithadversehealthreports,medicalutilization,morbidity,andmortalityamongsurvivors."Althoughthereissomeconcernthatthisliteratureincludesworkwithmethodologicalflaws,FriedmanandSchnurr(1995)emphasizedthattherewas"generalconsistencyoffindingsacrossdiversetraumapopulationsandoutcomes...,"includingmorbidityandmortalitydatathatsupportedself-reportandutilizationdata.
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6ConclusionsandRecommendationsAgreatdealoftimeandefforthasbeenexpendedevaluatingDoD'sComprehensiveClinicalEvaluationProgram.IthasbeenreviewedbythePresident'sAdvisoryCommittee,theGeneralAccountingOffice,theOfficeofTechnologyAssessment,theInstituteofMedicine,andmanyotherorganizations.Asmoreislearned,itbecomeseasiertofocusonthekindsofquestionstheCCEPshouldbeasking.AsDr.PenelopeKeylsaidinherworkshoppresentationonthedevelopmentofgoodscreeninginstruments,progressmadeovertimewillnecessitatenewgenerationsofscreeninginstruments.Thisdoesnotimplythatthefirstinstrumentdevelopedisbad,butratherthattimeleadstonewknowledge,whichleadstotheabilitytoimprovetheinstrument.
SuchisthecasewiththeCCEP.Overtime,theCCEPandotherprogramshavegeneratedinformationthathasledustofocusonareasofimportanceforthoseconcernedaboutthehealthconsequencesofPersianGulfdeployment.Thisinformationhasenabledustotakeacloserlook,tomakeamorethoroughexaminationofthesystem,andtoidentifyareasinwhichchangewillbeofbenefit.Thecommitteebelievesthatsuchchangeishealthy,thatitreflectsgrowth,andthatitshouldbeanaturalpartofanysystemhavingasoneofitsgoalsthedeliveryofhigh-qualityhealthcareservices.
Changealsooccurswithindividuals.Itmaybethatastimepassesornewinformationisreleased,someofthosewhohavealreadyparticipatedintheCCEPwilldevelopnewconcernsorproblems.ThecommitteehopesthatDoDwillencouragetheseindividualstoreturntotheCCEPforfurtherevaluationanddiagnosis.
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ThecommitteewishestoemphasizethatitisimpressedwiththededicationandconcernexhibitedbyDoDpersonnelwithwhomcommitteemembersmet.TheseindividualsareknowledgeableregardingPersianGulfissuesandwillingtolearnmoreaboutidentifyingandresolvingareasofconcernforimprovingthehealthofactive-dutypersonneldeployedtotheGulf.
MEDICALLYUNEXPLAINEDSYMPTOMSYNDROMES
Thecommitteespentsometimedeliberatingontheprecisemeaningof"difficulttodiagnose"or"illdefined"asadescriptionofacategoryofconditions.Whenlabelingsomethingasdifficulttodiagnose,oneusuallymeansthatspecialexpertiseisrequiredtoarriveatadiagnosis,butmanyoftheseconditionsdonotrequiresuchexpertise.Chronicfatiguesyndrome,fibromyalgia,andmultiplechemicalsensitivityaresymptomcomplexesthathaveagreatdealofoverlapinthesymptomspresentineachconditionbutarewelldefinedclinically,eveniftheyaremedicallyunexplained.Despitethefactthattheyaremedicallyunexplained,theymaycausesignificantimpairmentandtheyareillnessesthatareonlyunderstoodthroughtime,thatis,itrequiresthepassageoftimeandtheevaluationofresponsestotreatmenttoarriveatthesediagnoses.Thecommitteedecided,therefore,torefertothisspectrumofillnessesasmedicallyunexplainedsymptomsyndromes.Thisspectrumofillnessesmayincludethosewhichareetiologicallyunexplained,lackcurrentlydetectablepathophysiologicalchanges,and/orcannotcurrentlybediagnosticallylabeled.
Thesemedicallyunexplainedsymptomsyndromesareoftenassociatedwithdepressionandanxiety.Thereremainsadebateabouthowtodistinguishthesesyndromesfrompsychiatricdiagnoses,butitisclearthattheyarenotsimplypsychiatricdiagnoses.However,sincemostoftherecommendedtreatmentsformedicallyunexplained
symptomsyndromesoverlapwiththepharmacologicalandbehavioraltreatmentsforpsychologicalconditionsorpsychiatricdiagnoses,thecommitteebelievesthatitisimportanttoidentifyandevaluatethesymptomsassociatedwiththeseconditionsandthentreatthosesymptoms.
Thecommitteerecommendsthatwhenpatientspresentingwithmedicallyunexplainedsymptomsyndromesareevaluated,theprovidermusthaveaccesstothefullandcompletemedicalrecord,includingprevioususeofservices.Thepresenceofsuchinformationisimportantbecauseadequateevaluationofthesedisordersinvolvesalongitudinalperspectivethatincludesresponsetotreatment.
Intheareaofmedicallyunexplainedsymptomsyndromes,itissometimesnotpossibletoarriveatadefinitivediagnosis.Itmaybepossible,however,totreatthepresentingcomplaintsorsymptoms.Thecommitteerecommendsthatincaseswhereadiagnosiscannotbeidentified,treatmentshouldbe
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targetedtospecificsymptomsorsyndromes(e.g.,fatigue,pain,depression).Ifthesesymptomsandconditionsareleftuntreated,theycanbecomechronicandpotentiallydisabling.ThecommitteerecommendsthattheCCEPbeencouragedtoidentifypatientsinthisspectrumofillnessesearlyintheprocessoftheirdisease.Inaddition,primarycareprovidersshouldidentifythepatients'functionalimpairmentssoastobeabletosuggesttreatmentsthatwillhelpimprovethesedisabilities.
STRESS
Inthisgroupofmedicallyunexplainedsymptomsyndromesitisimportanttorecognizeandacknowledgethattheproblemsandstressfacingthepatientwillcontinuetobedifficult.Stressisamajorissueinthelivesofpatientswithinthisspectrumofillness.Stressneednotbelookedatsomuchasacausativeagent,butratherasapartoftheconditionofthepatientthatcannotbeignored.Withthesemedicallyunexplainedsymptomsyndromes,thepotentialforstressproliferationisgreatamongboththepersondeployedtothePersianGulfandthefamilymembers.
MediaattentionandreportsbythemilitarytoGulfWarveteransthattoxicexposurecouldhaveoccurredareverystressfulevents,regardlessofanyone'seffortstoexplainwhathappened.Suchannouncementscarrywiththemstressfulburdensfortheveteran.Thestressassociatedwiththesereportsofandworryovertoxicexposuresneedstoberecognizedandaddressed.
Researchhasshownthatstressorshavebeenassociatedwithmajordepression,substanceabuse,andvariousphysicalhealthproblems.ThosedeployedtotheGulfwereexposedtoavastarrayofdifferentstressorsthatcarrywiththemtheirownpotentialhealthconsequences.Currentcollectionofexposureinformationdoesnotadequately
addressaninvestigationoftraumaticeventstowhichthedeployedsoldiermayhavebeenexposed.ThecommitteerecommendsthattheCCEPcontainquestionsontraumaticeventexposuresinadditiontotheexposureinformationcurrentlybeingcollected.Thiswouldincludetheadditionofopen-endedquestionsthataskthepatienttolisttheeventsthatweremostupsettingtohimorherwhiledeployed.Positiveresponsestoquestionsregardingsuchevents,aswellastootherexposurequestions,shouldbepursuedwithanarrativeinquiry,whichwouldaddresssuchitemsasthespecificnatureoftheexposure;theduration;thefrequencyofrepetition;thedoseorintensity(ifappropriate);whetherthepatientwastakingprotectivemeasuresand,ifso,whatthesemeasureswere;andthesymptomsmanifested.
OthersuggestionsforquestionsthatcouldbeaddedtotheCCEPincludethefollowing:Whendidyoufirsthavequestionsorworriesaboutbeingexposed?Whendidyoufirsthearotherinformationonpossibleexposures?
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Whatwereyourresponsestothatinformation?ProvidersintheCCEPneedtotakeahistorythatincludessomenarrativetoallowtheveterantoexpresshowheorshefeels.
Itisalwaysimportanttounderstandandacknowledgethatthepatients'complaintsarereal.ItiscertainlyimportantforprovidersintheCCEPtodosowhenattemptingtoidentifyandaddressthehealthconcernsofPersianGulfveterans.Furthermore,nomatterwhatadditionalinformationmaybeforthcomingaboutpotentialexposurestotoxinsandtheireffects,thecommitteerecommendsthatDoDprovidersacknowledgestressorsasalegitimatebutnotnecessarilysolecauseofphysicalsymptomsandconditions.
Thecommitteebelievesthattherearecertainjobsundertakeninthemidstofwarthat,bytheirverynature,resultinhighstress(e.g.graveregistrationduty).Theeffectofstressassociatedwiththesejobscanbemitigatedifapproachedproperly.ThecommitteerecommendsthattheDoDprovidespecialtraininganddebriefingforthosewhoareengagedinhigh-riskjobssuchasthoseassociatedwiththePersianGulfexperience.Everysoldierwhogoestowarwillbesubjectedtomajordisturbingeventssincewarbyitsverynatureinvolvesdeathanddestruction.ThecommitteerecommendsthatDoDprovidetoeachabout-to-bedeployedsoldierriskorhazardcommunicationwhichiswelldevelopedanddesignedtoprovideinformationregardingwhattheindividualcanexpectandthepotentiallytraumaticeventstowhichheorshemightbeexposed.
Thecommitteewishestoemphasizethattheaccuratediagnosisofpatientswithmedicallyunexplainedsymptomsyndromesand/orconditionsinducedorexacerbatedbyupsettingeventsrequirestheexpenditureoftime,timeinwhichtheproviderandthepatientinteract.Itisnotpossibletohandthepatientaquestionnaireandexpectthatallnecessaryinformationwillberevealed.Inaworldof
timeconstraintsandtightlyscheduledappointments,thecommitteerecommendsthatadequatetimemustbeprovidedduringinitialinteractionswithpatientsintheCCEPinordertoensurethatallpertinentinformationisforthcoming.Thecommitteebelievesthatthepatient-physicianinteractionshouldbefostered,andtheperceptionthatevaluationisdirectedbytheclockshouldbeavoided.
SCREENING
Depressionisaconditionthatiscommoninprimarycare.Mostindividualswhoexperiencedepressioncontinuetofunction,butiftheyareleftuntreated,theirconditiondeteriorates.Unlikemanyofthemedicallyunexplainedsymptomsyndromes,thereareeffectivetreatmentsfordepression.ThedatapresentedindicaterisingratesofdepressionamongthoseexaminedintheCCEP
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butnoevidencethatindividualsarebeingproperlydiagnosedortreatedaccordingtocurrentlyacceptedclinicalpracticeguidelines.Therearemanyself-ratedscreeningtests(e.g.,theBeckDepressionInventory[BDI],theZungScale,theCenterforEpidemiologicalStudies-DepressionScale[CES-D],theInventorytoDiagnoseDepression[IDD])thatcouldbeusedasafirst-levelscreenattheprimarycarelevel.
Thecommitteerecommendsthattherebeincreasedscreeningattheprimarycarelevelfordepression.Everyprimarycarephysicianshouldhaveasimplestandardizedscreenfordepression.Ifapatientscoresinthesignificantrange,thispersonshouldbereferredtoaqualifiedmentalhealthprofessionalforfurtherevaluationandtreatment.Ifdepressionisidentified,therehastobemorequestioningonexposuretotraumaticproblems.
TherehasbeenagreatdealofconcernevincedaboutthepossibilityofwidespreadPSTDinthosedeployedtothePersianGulf.MostoftheindividualsidentifiedashavingPTSDarediagnosedfollowingastructuredinterviewatPhaseII.However,thecommitteebelievesthattherearethosewhohavesomeofthesymptomsofPTSDorofdepressionbutarenottruePTSDcasesyetmightbehelpedwithtreatmentoftheirsymptoms.
ThecommitteerecommendsthatanyindividualwhoreportsanysignificantPTSDsymptomsand/orasignificanttraumaticstressorshouldbereferredtoaqualifiedmentalhealthprofessionalforfurtherevaluationandtreatment.
Substanceabuseormisuseproblemsareprevalentinprimarycare.Inaddition,individualswithuntreateddepressionorwithmedicallyunexplainedsymptomsyndromesmayhaveanenhancedriskofsubstanceabuse.(SeeAppendixIforexamplesofscreeninginstruments.)Thecommitteerecommends,therefore,thatevery
primarycarephysicianshouldhaveasimple,standardizedscreenforsubstanceabuse.Everyindividualwhoscreenspositiveshouldbereferredforfurthertreatmentandevaluation.
Therearecertainareasinwhichbaselineassessmentsareofimmensevalueintheclinicalevaluationofanindividualpatient'sstatus(e.g.,pulmonaryfunctionandneurobehavioraltesting).Changesinneurocognitiveandperipheralnervefunctionaremeasuredbycomparingtheindividual'scurrentstatustoabaselinemeasure.Thisisalsotrueformeasuringcomplaintsofmemoryimpairment.Individualbaselineinformationisnecessarybecausethevariabilityacrossindividualsistoogreattoidentifyageneralized"normal"screeninglevel.
ThecommitteerecommendsthatDoDexplorethepossibilityofusingneurobehavioraltestingatentryintothemilitarytodeterminewhetheritisfeasibletousesuchteststopredictchangeinfunctioningortrackchangeinfunctionduringasoldier'smilitarycareer.
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PROGRAMEVALUATION
MostpatientsintheCCEPreceiveadiagnosisaftercompletingaPhaseIexamination;somearereferredtoPhaseIIforevaluation;andafewhavegoneontoparticipateintheprogramattheSpecializedCareCenter.Informationpresentedtothecommitteeindicatesthatthereisgreatvariationacrossregionsinthepercentageofpatientswhoarediagnosedashavingprimarypsychiatricdiagnoses.Adeterminationofthereasonsforthisvariationshouldbemade.Althoughtheremaybemanyreasons,oneexplanationcouldrelatetotheconsistencywithwhichproceduresfordiagnosisandreferralareimplementedfromfacilitytofacility.Thecommitteerecommendsthatanevaluationbeconductedtoexamine(1)theconsistencywithwhichPhaseIexaminationsareconductedacrossfacilities;(2)thepatternsofreferralfromPhaseItoPhaseII;and(3)theadequacyoftreatmentprovidedtocertaincategoriesofpatientswherethereisthepotentialforgreatimpactonpatientoutcomeswheneffectivetreatmentisrendered(e.g.,depression).
ThiseffortcouldbefacilitatedbythedevelopmentanduseofclinicalpracticeguidelinessuchasthosecurrentlybeingdevelopedbytheDepartmentofVeteransAffairsandmanymedicalspecialties.Clinicalpracticeguidelinesaresystematicallydevelopedstatementsthatassistpractitionersandpatientsindecisionmakingaboutappropriatehealthcareforspecificclinicalcircumstances(IOM,1992).Theprocessofdevelopingtheseguidelinescouldalsoserveasanopportunityforincreasedlearningforproviderssincetheirparticipationiscrucialtosuccessfulimplementation.
TheSpecializedCareCenteratWalterReedArmyMedicalCenterhasprovidedevaluationandtreatmentto78patients.Agreatdealofeffortandthoughthasgoneintothedevelopmentofaprogramdesignedtohelpthepatientunderstandhisorherconditionsandengagein
behaviorsmostlikelytoresultinimprovement.Thecommitteewasaskedtoassesstheeffectivenessofthiscenterwithinthecontextofmedicallyunexplainedsymptomsyndromes,stress,andpsychiatricdisorders.AsthecommitteebeganitsdiscussionoftheeffectivenessoftheSpecializedCareCenteritbecameapparentthatsuchanassessmentwasdependentonanumberoffactorsthathavenotbeenwelldefined.Whatisthegoalofthecenter-isittreatment,research,oreducation?Shouldamajorconsiderationinthecenter'sevaluationbethecostofservices?Shouldthenumbersofthosereceivingcarebetakenintoconsideration,andifso,whatarethebarrierstopatientsaccessingthislevelofcare?
Thecommitteeconcludedthatatthistime,itisnotpossibletoconductafairoradequateevaluationoftheSpecializedCareCenter.Thecommitteerecommendsthatashort-termplan(perhaps5years)bedevelopedfortheSpecializedCareCenterthatwouldspecifygoalsandexpectedoutcomes.Basedonsuchaplan,anevaluationcouldthenbeundertakentoassesstheeffectivenessofthecenter.
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COORDINATIONWITHTHEVA
GiventhatmanynowreceivingservicesintheDoDhealthcaresystemwilleventuallymovetotheVAhealthcaresystem,itisimportanttohavegoodcommunicationbetweenDoDandtheVA.Thismaybeparticularlytrueintheareasofmedicallyunexplainedsymptomsyndromesandpsychiatricdisorders,whereaccuratediagnosisandassessmentofresponsetotreatmentareimportantforpositivepatientoutcomes.ThecommitteerecommendsthatDoDexplorewaystoincreasecommunicationwiththeVA,particularlyasitrelatestotheongoingtreatmentofpatients.
BothpatientsandproviderswouldbenefitfromincreasededucationalactivityregardingPersianGulfhealthissues.ProviderturnoverwithinDoDisafactorthatmustbetakenintoconsiderationwhenexaminingthespecialhealthneedsandconcernsofactive-dutypersonnelwhoweredeployedtothePersianGulf.AlthougheffortsatprovidereducationwereextensiveatthetimetheCCEPwasimplemented,threeyearshavepassedandmanynewprovidershaveenteredthesystem.Theseindividualsshouldbeorientedtothespecialneeds,concerns,andproceduresinvolved,andallprovidersshouldbeupdatedregularly.
TheVAhasdevelopedanumberofapproachestoprovidereducation.Interactivesatelliteteleconferencesareavailableperiodicallyformedicalcenterstafftodiscussparticularissuesofconcern.TheVAconductsquarterlynationaltelephoneconferencecalls,directsperiodiceducationalmailingstoPersianGulfRegistryprovidersineachhealthfacility,andconductsanannualconferenceonthehealthconsequencesofPersianGulfservice.ThecommitteerecommendsthatDoDexaminetheactivitiesandmaterialsforprovidereducationdevelopedbytheVAtodetermineifsomeoftheitemsmightbeusedaseducationalapproachesforDoDproviders.
AlthoughthetopicsofongoingeducationaleffortsarebestdeterminedbyDoDonaperiodicbasis,thecommitteerecommendsthatDoDmountaneffortdesignedtoeducateproviderstothefactthatconditionsrelatedtostressarenecessarilypsychiatricconditions.Thecommitteerecommendsthatdepressionbeatopicofeducationforallprimarycareproviders,withemphasisonthefactsthatdepressioniscommon,itistreatable,andindividualswhoexperiencedepressioncancontinuetofunction.
ThecommitteewishestoreemphasizethefactthattheCCEPisnotaresearchprotocolbutratheraprogramdesignedtodiagnosethehealthproblemsofthosewhoservedinthePersianGulf.Assuch,informationobtainedthroughtheCCEPshouldnotbeusedtoanswerresearchquestions.Itisappropriate,however,tousethedataandnarrativeinformationobtainedfromtheCCEPtoinformtheclinicaltreatmentprocess.Indoingso,thecommitteebelievesthatitisimportanttounbundlediagnosticcategories.Forexample,tensionheadache
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isclassifiedasasomatoformdisorderwithinthecategoryofpsychiatricdiagnosis.
Inaddition,atremendousamountofqualitativeinformationcouldbeusedindevelopingcasestudiestohelpprovidersbetterunderstanddiagnosticandtreatmentapproachesthatappeareffectiveatimprovingindividualpatients'conditions.
ThecommitteerecommendsthatCCEPinformationbeusedtodevelopcasestudiesthatwillhelpeducateprovidersaboutPersianGulfhealthproblems.Thereareanumberofwaysinwhichthesecasestudiescouldbesharedincludingpresentationduringprofessionalmeetings.
ThereisalsoaneedforeducationandcommunicationwithindividualswhoweredeployedtotheGulfandwiththeirfamilies.TheseindividualsareconcernedaboutthepotentialimpactofPersianGulfdeploymentontheirhealth,whetherornottheirhealthconcernswillaffecttheirmilitarycareers,theirabilitytoobtainhealthinsuranceoncetheyleavetheservice,andanumberofotherissuesthatneedtobeaddressed.
Avarietyofmechanismsareavailableforprovidingsuchinformationincludingindividualpostnewsletters,theInternet,mailingstothoseintheRegistry,andpublicforums.Itisespeciallyimportanttoprovideaforumfordiscussioneachtimenewinformationisreleasedonpossibleexposures.ThecommitteerecommendsthatDoDdevelopapproachestocommunicationandeducationthataddresstheconcernsofindividualsdeployedtothePersianGulfandtheirfamilies.
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AppendixAPresidentialAdvisoryCommitteeonGulfWarVeterans'Illnesses:FinalReportRecommendations*
RECOMMENDATIONS
TheCommittee'sevaluationofthegovernment'sresponsetoconcernsaboutGulfWarveterans'illnessesledustofindingsinoutreach,medicalandclinicalissues,research,chemicalandbiologicalweapons,andcoordination.Basedonouranalysesandthesefindings,theCommitteemakesthefollowingrecommendations:
Outreach
DODandVAshouldfollowthemodeloffield-basedoutreachdemonstratedintheVetCentersandthePersianGulfFamilySupportProgramwhendevelopinghealtheducationandriskcommunicationcampaignsforactivedutyservicemembers,ReserveandNationalGuardpersonnel,andotherveterans.General,lessspecificoutreachmethods-e.g.,hotlinesandpublicserviceannouncements-shouldbeviewedasimportantsupplements,butnotasreplacements.
VAshoulddirectitsTransitionAssistanceProgramworkshopbenefitscounselorstospecificallymentionDODandVAprogramsrelatedtoGulfWarveterans'illnesses.
*ThisappendixhasbeenexcerptedfromthePresidentialAdvisoryCommitteeonGulfWarVeterans'Illnessesreport,PresidentialAdvisoryCommitteeonGulfWarVeterans'Illnesses:FinalReport,Washington,D.C.:U.S.GovernmentPrintingOffice,1996.
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VAshouldensurethatitsinitiativesundertheWomenVeteransHealthProgramsspecificallyprovideinformationaboutGulfWar-relatedprograms.
VAshouldensurethatitsoutreachtoLatinopopulationsspecificallyprovidesinformationaboutGulfWar-relatedprograms.AstheCommitteestatedinitsInterimReport,DODandVAshoulddevelopandutilizemorerefinedperformancemeasurestodeterminehowwelloutreachservicesarereachingconcernedparties.DODandVAofficials(specificallythoseintheAmericanForcesInformationServiceanditsbroadcastingarm,theArmedForcesRadioandTelevisionService)usingmediaproductsforoutreachinitiativesshouldbeawareofthedifficultyinenumeratingtheactualreadershipandviewershipfiguresandbeconcernedabouthoweffectivelytheirmessagesaturatesthetargetedpopulation.
DODshouldreissueitsInternalInformationPlanonGulfWar-relatedillnesses.ItshouldmakeaspecialefforttonotetherevisionprovidesthetollfreenumberandthatindividualsareencouragedtoregisterforitsComprehensiveClinicalEvaluationProgram.Italsoshouldtakethisopportunitytoprovideupdatedinformation.
Inanattempttoincreaseveterans'andthepublic'sawarenessandunderstandingofthefullrangeofthegovernment'scommitmenttoaddressingthenatureofGulfWarveterans'illnesses,DODandVAshouldreevaluatethegoalsandobjectivesoftheirriskcommunicationefforts.DODandVAshoulddevelopeffectivemethodsthatprovidetheaffectedcommunitywithcomprehensiveinformationconcerningpossibleexposurestoenvironmentalhazards,potentialhealtheffectsfromriskfactors,andexplanationsofongoingandcompletedclinicalandepidemiologicstudies.
DODandVAshouldimmediatelydevelopandimplementacomprehensiveriskcommunicationplan.Thiseffortshouldmove
forwardinclosecooperationwithagenciesthathaveahighdegreeofpublictrustandexperiencewithriskcommunication,suchastheAgencyforToxicSubstancesandDiseaseRegistryandtheNationalInstituteforOccupationalSafetyandHealth.
Becausehealthriskinformationandeducationappliestoservicememberswhoremainonactiveduty,membersoftheReservesandNationalGuard,andveteransnolongerinmilitaryservice,DODandVAshouldcloselycoordinatethefederalgovernment'sriskcommunicationeffortforGulfWarveteransandothermembersoftheaffectedcommunity.Departmentalcommitmentstoanyplanshouldbeviewedascontinuousandlong-term;asustainedeffortisparticularlycriticalinlightofveterans'andpublicskepticismarisingfromtherecentrevelationsrelatedtochemicalweapons.
Initscoordinatedriskcommunicationplan,DODandVAshouldengageveteransserviceorganizationsasintermediaries-andincludepersonnelinleadershippositions,suchasseniorenlistedpersonnel(foractivedutymilitary)
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andstateveterans'serviceofficials-intheefforttoestablishanefficientinformationexchangeprocesswhereveteransreceiveaccurateinformationandthedepartmentsreceivevaluablefeedbackonclinicalprograms,healthconcerns,andcommunicationefforts.
MedicalandClinicalIssues
GiventhattheFoodandDrugAdministration's(FDA)InterimFinalRulepermittingawaiverofinformedconsentforuseofunapprovedproductsinamilitaryexigencyisstillineffect,DODshoulddevelopenhancedorientationandtrainingprocedurestoalertservicepersonneltheymayberequiredtotakedrugsorvaccinesnotfullyapprovedbyFDAifaconflictpresentsaseriousthreatofchemicalandbiologicalwarfare.
FDAshouldsolicittimelypublicandexpertcommentonanyrulethatpermitswaiverofinformedconsentforuseofinvestigationalproductsinmilitaryexigencies.Amongtheareasthatspecificallyshouldberevisitedare:adequacyofdisclosuretoservicepersonnel;adequacyofrecordkeeping;longtermfollowupofindividualswhoreceiveinvestigationalproducts;reviewbyaninstitutionalreviewboardoutsideofDOD;andadditionalprocedurestoenhanceunderstanding,oversight,andaccountability.
DODofficialsatthehighestechelons,includingtheJointChiefsofStaffandtheCommanderinChief,shouldassignahighprioritytodealingwiththeproblemoflostormissingmedicalrecords.Acomputerizedcentraldatabaseisimportant.Specializeddatabasesmustbecompatiblewiththecentraldatabase.Attentionshouldbedirectedtowarddevelopingamechanismforcomputerizingmedicaldata(includingclassifiedinformation,ifandwhenitisneeded)inthefield.DODandVAshouldadoptstandardizedrecordkeepingtoensurecontinuity.
ThePersianGulfVeteransCoordinatingBoardandotherappropriatedepartmentsandagenciesshouldbechargedtodevelopaprotocoltoimplementthefollowingrecommendation,whichwasmadeintheCommittee'sInterimReport:Priortoanydeployment,DODshouldundertakeathoroughhealthevaluationofalargesampleoftroopstoenablebetterpostdeploymentmedicalepidemiology.Medicalsurveillanceshouldbestandardizedforacoresetoftestsacrossallservices,includingtimelypostdeploymentfollowup.
VAandDODshould,intheireducationaloutreachprograms,specificallytargetstaffmembersnotdirectlyinvolvedinthecareofGulfWarveterans.
DODandVAshouldincludetimelyupdatesontheComprehensiveClinicalEvaluationProgramorPersianGulfHealthRegistry,respectively,intheirContinuingMedicalEducationprograms.
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VAandDODshouldregularlybrieftheirstaffsontheGulfWarresearchportfolioandontheresultsofresearchstudiesastheybecomeavailable.
VAandDODshouldregularlyreviewstaffingneeds,particularlyinmentalhealth,andincreaserecruitmentandretentionofadequatenumbersofmedicalprofessionalstosatisfypatientneeds.Staffingreviewsshouldconsiderthat,despiteincreasedmedicalsurveillanceandbetterpreventivemeasures,futuredeploymentsalsowillgenerateasignificantnumberofveteranswhowillneedcareforillnessesthataredifficulttodiagnose.
Since1986,U.S.servicememberswithcertainchronicillnesses,e.g.,asthmaanddiabetes,havebeenallowedtoremainonactivedutywhenregularmedicalmonitoringisnecessary.VeteransoftheGulfWarwithchronicillnessesarenodifferent.Troopcommandersshouldberemindedthatadequatetimeoffforfollow-upmedicalappointmentsisanecessityandapriority.
Thegovernmentshouldconductathoroughreviewofitspoliciesconcerningreproductivehealthandseekstatutoryauthoritytotreatveteransandtheirfamiliesforservice-connectedproblems.Whenindicated,geneticcounselingshouldbeprovided-eitherviaVAtreatmentfacilitiesorreferraltoassistveteransandtheirfamilieswhohavereproductiveconcernsstemmingfrommilitaryservice.
Thegovernmentshouldcontinueandintensifyitseffortstodevelopstressreductionprogramsforalltroops,withspecialemphasisondeployedtroops.
Sinceleadershipandunitcohesionaresoimportantinmanagingstress,DODshouldspecificallyinvolveseniorcommandersandseniornoncommissionedofficersinstressmanagementprograms.
Research
TheResearchWorkingGroupofthePersianGulfVeteransCoordinatingBoardshouldrequirethatanyproposalsfornew,large-scaleGulfWarveterans'epidemiologichealthresearchdescribeaplantoincorporateapublicadvisorycommitteeintothestudydesign,disseminationofresults,orboth.TheResearchWorkingGroupshouldconsiderjustifyingawaiverofsuchacommitteeonlyunderrarecircumstances.
Thegovernmentshoulddevelopmoreaccurateandreliablemethodsofrecordingtrooplocationstofacilitatepost-conflicthealthresearchinthefuture.DODshouldmakefulluseofglobalpositioningtechnologies.
Thegovernmentshouldplanforfurtherresearchonpossiblelong-termhealtheffectsoflow-levelexposuretoorganophosphorusnerveagentssuchassarin,soman,orvariouspesticides,basedonstudiesofgroupswithwellcharacterizedexposures,including:(a)casesofU.S.workersexposedto
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organophosphoruspesticides;and(b)civiliansexposedtothechemicalwarfareagentsarinduringthe1994and1995terroristattacksinJapan.AdditionalworkshouldincludefollowupandevaluationofanappropriatesubsetofanyU.S.servicepersonnelwhoarepresumedtobeexposedduringtheGulfWar.Thegovernmentshouldbeginbyconsultingwithappropriateexperts,bothgovernmentalandnongovernmental,onorganophosphorusnerveagenteffects.Studiesofhumanpopulationswithwell-characterizedexposureswillbemuchmorerevealingthanstudiesbasedonanimalmodels,whichshouldbegivenlowerpriority.
SinceanumberofGulfWarriskfactorsarepotentialhumancarcinogensthatcouldresultinincreasedratesofcancerbeginningdecadesafterexposure,VAshouldcontinuetomonitorGulfWarveteransthroughitsongoingmortalitystudyforincreasedratesoflung,liver,andothercancers.
DepleteduraniummunitionsarelikelytobeusedinfutureconflictsinvolvingU.S.servicepersonnel.Tofullyelucidatethehealtheffectsofdepleteduraniummunitions,VAshouldconductresearchthatcomparesthehealthstatusofindividualswithembeddedfragmentsofDUshrapnelwithappropriatecontrolgroups.
ThegovernmentshouldcontinuetocollectandarchiveserumsamplesfromU.S.servicepersonnelwhenfeasible.
TheResearchWorkingGroupshouldmorethoroughlyconsultwithotherfederalagencieswithrelevantexpertise-suchastheNationalInstitutesofHealth(particularlytheNationalInstituteofEnvironmentalHealthSciences)andtheAgencyforToxicSubstancesandDiseaseRegistry-onbasic,clinical,andepidemiologicresearchandonriskcommunication.
ChemicalandBiologicalWeapons
AllU.S.servicepersonnelassignedtounitsneartheKhamisiyahdemolitionactivityshouldbenotifiedandencouragedtoenrollinVA'sPersianGulfHealthRegistryorDOD'sComprehensiveClinicalEvaluationProgram.IndeterminingtheextentofpossiblechemicalwarfareagentexposureatKhamisiyahandanyothersitesthatfutureinvestigationsuncover,thegovernmentshouldusethebesttheoreticalandpracticalassessmenttoolsavailable.TheCommitteerecognizesthelargenumberofvariablesthatcanaffecttheoutcomeofanydetermination,butidentifiesthefollowingasessentialprinciples:
Whereobjective,unrebuttedevidencesuggeststhereleaseofchemicalwarfareagentsinthevicinityofU.S.troops,everyeffortshouldbemadetoidentifythesourceoftheagentandtomodel
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thedownwindfootprintofthepotentialdistributionofagentatthegeneralpopulationexposurelevel(orlowerthreshold,ifappropriate);
Whenadownwindfootprintisestablished,aconservative,presumptive-exposureareashouldbedefinedthatreflectstheuncertaintiesofthemodelingeffort.Thepresumptive-exposureareashould,ataminimum,includeallsiteswithinacirclethathasaradiusequaltothelengthofthedownwindfootprint;and
Troopswithinthepresumptive-exposureareashouldbenotifiedandencouragedtoenrollintheCCEPorRegistry.
AllreportsofpositiveM256kitsandFoxdetectionsmustbethoroughlyinvestigated.Whereunitlogsrecordpositivedetectionsbyeithertypeofequipment,membersofthatunitshouldbenotifiedandencouragedtoenrollinVA'sPersianGulfHealthRegistryorDOD'sComprehensiveClinicalEvaluationProgram.
Toensurecredibilityandthoroughness,furtherinvestigationofpossiblechemicalorbiologicalwarfareagentexposuresduringtheGulfWarshouldbeconductedbyagroupindependentofDOD.Opennessinoversightactivitiesincludingpublicaccesstoinformationandveteranparticipation-publicnoticeofmeetings,opportunityforpubliccomment,andregularreportingareessential.Fullpublicaccountabilityiscritical.
Coordination
APresidentialReviewDirective(PRD)shouldbeissuedtoinstructtheNationalScienceandTechnologyCounciltodevelopaninteragencyplantoaddresshealthpreparednessforandreadjustmentofveteransandfamiliesafterfutureconflictsandpeacekeepingmissions.ThePresident'sCommitteeofAdvisorsonScienceandTechnologyandothernongovernmentalexperts,asappropriate,shouldbeaskedtoreviewtheplan12monthsafterthePRDisissued
andagainat18monthstoensurenationalexpertiseisbroughttobearontheseissues.
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AppendixBHealthConsequencesofServiceDuringthePersianGulfWar:InitialFindingsandRecommendationsforImmediateAction*
FINDINGSANDRECOMMENDATIONS
Inthisreport,theIOMCommitteehasattemptedtohighlightissueswebelievewouldbenefitfromimmediateaction.Inreviewingthelargevolumeofdocumentsandtheprogressofresearchcurrentlyunderway,wehaveidentifiedareasthatneedpromptattention.AsthescopeandextentofhealthproblemsofPersianGulfveteranshaveappearedtoexpand,thesocialresponsealsohasgrown.Thecommitteebelievesthatthishasresultedinafragmentedattempttosolvetheseproblems.Thuswebelievethatsustained,coordinated,andseriouseffortsmustbemadeintheneartermtofocusboththemedical,social,andresearchresponseoftheGovernmentandofindividualsandresearchers.Hence,thefindingsandrecommendationsthatfollowareofferedwiththeintenttofocusandsharpenthedebate,andtoimprovethequalityofthedata,andthereby,scientificinference.Finally,wehopetoimpactinapositivewaythehealthinpersonswhoservedinthePersianGulfWar,aswellasinthosewhomayfollowinothermilitaryencounters.
Recommendationsforimmediateactionfollowbasedonthefindingspresentedhereandthebackgroundinformationpresentedinthenextchapter.Therecommendationsaretobeviewedasindependent,andarenotpresentedinanypriorityorderwithincategories.Therecommendationsaredividedinto
*ThisappendixwasexcerptedfromtheInstituteofMedicinereport
HealthConsequencesofServiceDuringthePersianGulfWar:InitialFindingsandRecommendationsforImmediateAction,Washington,D.C.:NationalAcademyPress,1995.
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threecategories:dataanddatabases,coordination/process,andconsiderationsofstudydesignneeds.
DATAANDDATABASES
FindingI
TheVAPersianGulfHealthRegistryisnotapopulationdatabaseandisnotadministereduniformly,therefore,itcannotservethepurposesofresearchintotheetiologyortreatmentofpossiblehealthproblems.TheCommitteerecognizesthatcertaintabulateddescriptionsofaffectedpersonsmaylegitimatelybecarriedoutforreasonsotherthanthegenerationofscientificdata.Specifically,theremaybemedicalreasonsforcollectinginformationaboutpatientswithcertainkindsofproblems,especiallydiagnosticproblems,particularlyinmedicalsettingswheretheinformationmaybesubjectedtomoreintensescrutiny.AnexampleistheestablishmentoftheVAreferralcentersforGulfWarveterans.Sincealimitednumberofveteranshavebeenreferredtothesecenters,andbecausethesampleisself-selected,theCommitteeconcludesthatitisunlikelythatproductivescientificresearch(especiallyofanepidemiologicalnature)caneverbebasedonthedatageneratedbythereferralcentersorthehealthregistryascurrentlyorganized.
Recommendations
TheVAPersianGulfHealthRegistryshouldbelimitedandspecifictogatheringinformationtodeterminethetypesofconditionsreported.TheroleofthisregistryshouldbeclearlydefinedasameansforidentifyingandreportingillnessesamongGulfWarveteranswithconcernsabouttheirhealth.ThereshouldbeeffortstoimplementqualitycontrolandstandardizationofdatacollectedbytheregistryfromotherVAfacilities.TheVAregistrydatashouldnotbepromotedordescribedasameanstodetermineprevalenceestimatesoridentify
theetiologyofadisease,butshouldbereviewedpromptlyforenrollmenttrendsandpotentialsentinelevents.
TheVAshouldimprovepublicityregardingtheexistenceofthePersianGulfHealthRegistry,andencourageallconcernedPGWveteranstoberegistered.
Wherepossiblethereferralcenters,standardizedprotocolshouldbeusedineachVAfacility.
ThetimelinessofdatareceivedfromtheVAMedicalCenters(VAMC)tobeenteredintothePGHealthRegistrydatabaseneedstobeimproved.
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Finding2
NosinglecomprehensivedatasystemexiststhatenablesresearcherstotrackthehealthofPersianGulfWarveteransbothwhileonactivedutyandafterseparation.Asaresult,itisnotpossibletoconductresearchanddeterminethemorbidityandmortalityexperienceofthispopulation.AlthoughboththeVAandtheDoDhavemedicalrecordssystemsinplace,theyareinadequateandunlinked.Thislackofasingledatasystemisahindrancetoresearchconcerningdelayedhealtheffects,bothforPersianGulfveteransandforthoseservinginfutureencounters.
Recommendation
TheVicePresidentoftheUnitedStatesshouldchairacommitteecomposedofrepresentativesfromHHS,DoD,andVAtodeviseaplantolinkdatasystemsonhealthoutcomeswiththedevelopmentofstandardizedhealthforms,theabilitytoaccessinformationrapidly,andanorganizedsystemofrecordsforrapidentryintothedatasystem.
Finding3
ThecharacteristicsofthepopulationatriskarecriticaltoanydefinitivestudiesofGulfWarhealtheffects.TheDoDhastakentheproperstepstoenumerateanddescribethispopulationthatwillbepartoftheplanned,butyetincomplete,ArmyGeographicalInformationSystemmodel.
Recommendations
TheDoDregistryneedstobecompletedasquicklyandaccuratelyaspossible.
TheSecretariesofDoDandVAshoulddevelopasingleserviceconnectedhealthrecord,foreachpresentactivedutyand
formerservicemember.Allhealthdataentriesshouldberecordedinthissinglerecordfortheindividual.
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COORDINATION/PROCESS
Finding4
Thecommitteehasnotedwithinterestandsomeconcernthewidevarietyofdisciplinesandexpertiseamongpersonswhohaveconsideredpossiblecausesofamysteryillness.Ithasappearedtothecommitteethatsomeofthesepersonsandorganizationsaresimplynotqualifiedtodrawreasonedscientificconclusions,ortoimplementthoseconclusionsbymeansofspecificmedicalintervention.Theremaybesubstantialriskfrominappropriateinterventionsbecauseofadversereactionstodrugs,developmentofresistantstrainsofmicroorganisms,orespeciallythediversionofattentionawayfrommoreorthodoxdiagnosesandtreatmentsthatholdsomepromiseofrelieffromsymptomsofa''mysteryillness."
Recommendation
Decisionstoprovidefunding,toreferpatients,ortochangeusualoperatingproceduresforprovidingfinancialsupportshouldbebasedonmoresolidscientificbasesthanhassometimesbeenevidentinpriorresourceallocation.Fundingshouldbesubjecttoexternalpeerreviewandapproval.
Finding5
TherearedozensofstudiesofPGWhealtheffectsunderwaynow,andmanyothersarebeinginitiated.Severaleffortsappeartoberedundant,yetthereareclearlygapswhereresearcheffortsarenecessary.Initsfinalreport,theIOMCommitteewillrecommendsomeadditionalspecificresearchprojects.
Presently,thetotalnumberofundiagnosedconditionsisunknownbecausethedataeitherareinsufficientlyunderstoodorunavailable.Datathatareavailablearefragmented,managedbydifferentmethods
indifferentagencies,andbasedonawidevarietyofunconnectedrationales,frombothmilitaryandcivilianinstitutions.Manyresearcheffortsshould,butdonot,relyonacommonsetofdataresources.Becausesomanyunansweredquestionsremainconcerningmulti-systemetiologiesthathavebeenproposedtoexplainundiagnosedsignsandsymptoms,allfutureaswellascurrentevaluationsmustensurethatfindingscanbereconciledacrossstudies.
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Recommendations
ThePersianGulfVeteransCoordinatingBoard(chairedbytheSecretariesofVA,DoD,HHS)shouldactivelycoordinateallstudiesdevelopedfromanynewinitiativesthatreceivefederalfunding,topreventunnecessaryduplicationandtoassurethathighpriorityrecommendedstudiesbeconducted.Thesestudiesshouldundergoappropriateexternalpeerreviewbefore,during,andafterdatacollectionandanalysis.
MorestaffshouldbeassignedbythePersianGulfVeteransCoordinatingBoardinordertomonitor,collect,assemble,andmakeaccessiblewhenappropriateallrelevantrequestedemergingdatafromstudiesnowunderway,andmakeperiodicreportstotheappropriatefederaloversightauthority.
Eachnewinitiativeshouldbeevaluatedinthecontextofwhatitcancontribute.Thatis,eachnewstudyshouldaddsomethingofvaluetotheinformationalreadybeingobtainedoraccumulated.
CONSIDERATIONSOFSTUDYDESIGNNEEDS
Finding6
Todate,moststudiesofPGWveteranshavebeenpiecemeal-onemilitaryunithere,onecollectionofvolunteerswithsomeproblemthere,etc.But,someofthesestudieshaveseveralfundamentalproblems.Theyarenecessarilyincomplete,theyusuallylackpropercontrols,theyarehardtogeneralize,theyaresubjecttogravestatisticalproblemsbecauseofpost-hochypothesesandmultiplecomparisons,andwhereaneffecttrulyexiststheytendtohavelowstatisticalpowertodetectadifference.Thus,bitsandpiecesarenotlikelytoansweranycriticalquestions.Thecommitteerecognizesthataninitialefforttosurveyasampleofveteransisunderway,butmore
isneeded.
Overall,therehasbeenabroadandseriouslackofadequateattentiontothedesignofindividualstudies,andevenmoreseriously,thescopeandorganizationofanappropriatecollectionofstudies,eachfocusedontheresolutionofaspecificquestion.Thecommitteeregardsthisasagrave,thoughunderstandablefailure.Expertsinresearchdesigncanandshouldworkshouldertoshoulderwithexpertsinthesubjectmatterofeachindividualstudy;thisisparticularlytrueforworkinepidemiology.Abroaderviewofthewholecollectionofstudies,includinginputfromexpertsinsubjectmatterandinresearchmethods,personsknowledgeableaboutdatasourcesandmedicalcaresystems,andthosewithgeneralappreciationofpublicconcernsandpublicpolicy,hasbeenconspicuouslylacking.Webelievethatgoodstudiescouldbedone,butthattheywillrequiresubstantialinputfromexpertsinepidemiologicalmethods.
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Recommendations
TheVAandDoDshoulddeterminethespecificresearchquestionsthatneedtobeanswered.Epidemiologicstudiesshouldbedesignedwiththeobjectiveofansweringthesequestionsgiventheinputofexpertsinepidemiologicresearchmethodsanddataanalysis,alongwiththeinputofexpertsinthesubjectmatterareastobeinvestigated.
Toobtaindataonsymptomprevalence,healthstatus,anddiagnoseddisease,theSecretariesofDoDandVAshouldcollaboratetoconductapopulation-basedsurveyofpersonswhoservedinthePG,andofPG-eraservicepersonnel.Thestudyshouldbedesignedtoallowforadequatecomparisonsofoutcomebysex,servicebranch,andrank,withoversamplingamongcertainsubgroupstoallowforanalysis.TheIOMcommitteeiswillingtocommentonandassistinthestudydesign.Anevaluationofthefeasibilityandneedforalongitudinalstudyshouldtakeplacecoincidentwiththisnationalsurvey.
Finding7
Initialcharacterizationsofsmokeandunburnedcontaminantsfromtheoilwellfiresandothersourcesarenotadequate,norhavethedataavailablebeenreducedtoaformatusablefordrawingconclusionsorconductinghealthstudies.Considerabledataexistfromawidenumberofsources,buttheyhavenotbeencompiledoranalyzedinanyorganizedorefficientway.Forexample,leadlevelsthatwouldcauseacutetoxicityhavebeenreported;however,questionsaboutthevalidityofthesereportshavenotbeenadequatelyaddressed.
Recommendations
DoDshouldassembleandorganizethesedatafromallsourcesforevaluationbytheIOMcommittee.
DoDshouldconductastudythatsimulatesexposureintentsheated
bydieselfuel,withcompositionsimilartothatusedinthePG.FuelsandconditionsshouldsimulateascloselyaspossibletheconditionsthatexistedinthePG.Exposuretoleadanditspossibleeffectsshouldbeexploredfurther.ThecommitteereviewedworkdoneindicatingthatsomepersonnelintheGulfhadleadlevelsconsistentwithacuteintoxication.Thusininvestigatingleadexposure,specialattentionshouldbegiventoanyhistoryofabdominalpainormentaldisorders.
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Finding8
Asacknowledgedbytheinvestigator,theVAstudyofmortalityinthePGveteranpopulationisofinsufficientdurationtoobserveahigherrateofdeaththanwouldbeexpectedfromchronicdiseaseoutcomes.
Recommendation
TheVAshouldplanandprovidesupportforitsmortalitystudytocontinueinthefutureinordertopermitthedetectionandinvestigationoflong-termmortalityfromchronicdisease.
Finding9
Althoughinfertility,unrecognizedandrecognizedpregnancyloss,prematuredelivery,fetalgrowthretardation,birthdefects,andabnormaldevelopmentareallcomponentsofreproductivehealth,studiesandsurveillanceeffortstodatehavefocusedprimarilyonbirthdefects,fetalandneonataldeaths,andlowbirthweight.Adversereproductiveeffectscanbemediatedthroughmalesaswellasfemales,soitisimportanttostudyexposuresofbothparents.InformationoninfertilityandmiscarriagehasnotbeenincludedintheVAHealthRegistryefforts.Moreover,dataonoutcomesareavailableonlyfromasingleclusterstudyinMississippiandtheArmySurgeonGeneral'spreliminarydataevaluation.DoDlaunchedrecentlyastudyofreproductivehealth,andtheVAandDoDclinicalevaluationprotocolsprovidesomesurveillanceofinfertility,miscarriage,birthdefects,andinfantdeaths.
Thedesignofscientificstudiestoaddressreproductiveriskassociatedwithenvironmentalexposuresiscomplex.Avarietyofendpointsmayoccurthroughoutthecontinuumbeginningwithfertility,throughintrauterine,peripartum,andneonataldevelopment,andcontinuingwitheffectsmanifestedonlylaterinchildhood.Additionally,sophisticatedexpertiseisrequiredtodocumentenvironmental
exposuresastheetiologyforadversepregnancyexperience.Thereareresearchgroupsinsomeacademicandfederalsettingsthatcould,ifdeemedappropriate,conductsuchcomplexresearch.
Recommendations
VAandDoDshouldincludereproductiveoutcomesamongthearrayofhealthendpointsinsurveillanceprogramsbasedonmedicalrecordsandindividualquestionnaires.Medicalrecords,suchasthosetobeincludedintheSeabees
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reproductivestudyandtheDoDreproductivehealthstudy,wouldbesuitabletoascertainstillbirth,lowbirthweight,pretermdelivery,andmajorbirthdefects.QuestionnairessuchasthoseadministeredfortheVAhealthregistryexamcould,inaddition,addressquestionsofinfertilityandclinicallyrecognizedmiscarriage.
ThePersianGulfVeteransCoordinatingBoardshouldconsiderspecificexposuresthataremostlikelytoadverselyaffectreproductivehealthofwomen,menorboth,distinguishingbetweenagentsthatwouldaffectreproductivehealthonlyifexposureoccurredatoraroundthetimeofcriticalperiodsduringpregnancyversusthosethatmighthaveeffectsthatwouldpersistafterthecessationofexposure.Asspecifichypotheseslinkingexposureandreproductiveoutcomesareidentified,studiesthataresuitabletoprovidingmoreconclusiveresultsforthoseassociationsshouldbedesigned.
ThePersianGulfVeteransCoordinatingBoardshouldremainalertbutskepticalaboutclusterstudiessuchasthoseunderwayinMississippi.Studiesofthiskindmaybevaluableinsuggestingetiologichypotheses;however,theyhavelittlepromiseforresolvingquestionsaboutlinksbetweenexperiencesinthePersianGulfandreproductivehealth.Population-basedstudiesofreproductivehealthoutcomesareessentialtoresolvequestionsofeffectsofPersianGulfWarservice.
Finding10
WomenwhodidnotrealizethattheywerepregnantatthetimeweredeployedtotheGulf;othersbecamepregnantduringtheirserviceintheGulf.Thesegroupsofwomenmayhavebeenexposedtosubstancespotentiallyhazardoustothemselvesandtotheirunbornbabies.Astudywouldpermitcomparisonsofbirthoutcomesandpotentialadversehealtheffectsonwomenexposedatdifferenttimesintheirpregnancies.
Recommendation
ThePersianGulfVeteransCoordinatingBoardshouldconductastudytocomparewomendeployedtothePGwhowereorwhobecamepregnantatanytimeduringthePersianGulfWarwithanappropriategroupofotherwomenwhowerepregnant,butdidnotserveinthePGW,toevaluatepotentialadversehealthoutcomestothemotherorchild.Thisstudyshouldonlybedoneifasufficientnumberofwomencanbeidentified.Effortsshouldbemadetogatherexposureinformationrelevanttoserviceatpotentiallyhigh-risktimesduringgestation.
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Finding11
Thecommitteehasbecomeawarethatrostersexistthatcontainthenamesofpersonsvaccinatedwithanthraxandbotulinumtoxoid.
Recommendation
DoDshouldmaintainitslistsofthosereceivinganthraxandbotulinumvaccinesforthepurposeofconductingfollow-upstudiesonthesecohorts.
Finding12
Troopsweregivenpacketsofpyridostigminebromide(PB)pillstobetakenasaprophylactictothethreatofnerveagentexposure,atthedirectionoftheircommandingofficer.PBbyitself,inrecommendeddoses,isasafedrug.Additionally,DEET(N,N-diethyl-m-toluamide)andpermethrinwereusedbythetroopstopreventinsectbites.Thereissomeinformationaboutthepossiblelong-termtoxicitytohumansofDEETabsorbedthroughtheskin;howeverthereappearstobelittleornoinformationaboutdermalabsorptionofpermethrinfromresiduesleftonclothing,bedding,orelsewhere.Althoughpermethrinisgenerallynotappliedtoskin,animalstudieshaveshownthatpermethrinistransferredfromclothtoskin,andsubsequentlyabsorbed(NRC,1994).ThereislittleinformationabouthowPB,DEET,andpermethrinmightinteract;interactionsamongthesecompoundsarepossibleandareinadequatelystudied.
Recommendation
StudiesareneededtoresolveuncertaintiesaboutwhetherPB,DEET,andpermethrinhaveadditiveorsynergisticeffects.Unsubstantiatedsuggestionsthattheymayhavechronicneurotoxiceffectsneedtobetestedincarefullycontrolledstudiesinappropriateanimalmodels.AppropriatelaboratoryanimalstudiesofinteractionsbetweenDEET,
PB,andpermethrinshouldbeconducted.
Finding13
Reportedsymptomssuggestiveofvisceralleishmanialinfectionsincludefever,chronicfatigue,malaise,cough,intermittentdiarrhea,abdominalpain,weightloss,anemia,lymphadenopathy,andsplenomegaly.Thecommitteehas
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consideredtwoaspectsofexposuretoL.tropicaandresultinginfectionwithleishmania:theoccurrenceofeithercutaneousorvisceralleishmaniasis;andthepossibilitythatsomecomponentofthepoorlydefinedillnessreferredtoas"GulfWarSyndrome"mayresultfromleishmaniainfection.
Leishmaniasis(L.tropica)inPGWveteranshasbeenevaluatedinsomeverylimitedclinicalstudies,butnotinepidemiologicalstudies.TheclinicalstudiessuggestthatthecomplexofsymptomsinthePGWveteransdiagnosedwithleishmaniasisdiffersfromwhathasbeendescribedintheliteratureforotherformsofleishmaniasis.Amajorlimitationtofurtherinvestigationanddiagnosisofleishmaniasisisthelackofaninformativeserologictestorothereasytousescreeningtests.
Recommendations
TheDoDJointTechnologyCoordinationGroupIIhasresearchresponsibilitiesforinfectiousdiseasesofmilitaryimportanceandshouldgivehighprioritytothedevelopmentofascreeningapproachtobeusedunderfieldconditionsexpectedindeployment,andausefuldiagnostictestforL.tropica.Theboardalsoshouldreviewthestatusofleishmaniaresearch,withaviewtowardeitherdraftingarequestforproposalsfortestdevelopment,orthestructuredcoordinationofexistingactivities.
Allphysiciansshouldbenotifiedtolookforsymptomsthatareconsistentwithbothleishmaniainfectionandthosereportedas"GulfWarSyndrome"Clearinstructionsforfollow-upactionsshouldbewidelycommunicatedthroughthephysiciancommunity.VeteransofDesertStormshouldbenotifiedthatiftheyhavesymptomsthatmaysuggestviscerotropicleishmaniasistheyshouldbringthispossibilitytotheattentionofthestaffatanyfacilitywheretheyobtainanyhealthcare,whetheritisintheVAsystemornot.Thelattermaybe
particularlyimportantduetothepotentialforlong-termsurvivalofleishmaniainthehost.
Whenitbecomesfeasible,VA,DoD,orbothshouldconductanepidemiologicandseroepidemiologicstudyofleishmaniasisinPGWveteranspresentingsymptomsorconditionsandappropriatecontrols.Specialattentionshouldcenteronapossiblerelationbetweenleishmaniasisandthe"GulfWarSyndrome."
Finding14
TheecologyandepidemiologyofL.tropicaareinsufficientlystudied.Manyimportantquestionsremainunansweredconcerninghostspecies,vectors,andmeansoftransmissiontomilitarypersonnel.Thepossibleroleofdogsas
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reservoirsofdiseaseandtheexistenceofvectorsotherthansandfliesarequestionsthathavebeenraised.
Recommendations
DoDshouldcloselymonitorallinformationregardingecologicalandclinicalstudiesofL.tropicabeingconductedintheU.S.andabroad.
InternationalandU.S.researchersshouldbequeriedconcerninganyadvancesindiagnostictechniquesforidentifyingL.tropica.
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AppendixCHealthConsequencesofServiceDuringthePersianGulfWar:RecommendationsforResearchandInformationSystems*
CHARGETOTHECOMMITTEE:ITSFINDINGSANDRECOMMENDATIONS
Overview
InthischapterwesummarizethefindingsandprincipalrecommendationsoftheCommitteetoReviewtheHealthConsequencesofServiceDuringthePersianGulfWar(PGW).Mostofthefindingsarediscussedatgreaterlengthinthechaptersthatfollow.
Ourtaskwastorespondtothreespecificcharges.Eachfindingislinkedtoatleastoneofthecharges,andforeachwenotetheprincipalconnection.Recommendationsfolloweachofthefindings.Thecommitteewaschargedasfollows:
*ThesefindingsandrecommendationsweretakenfromtheInstituteofMedicinereport,HealthConsequencesofServiceDuringthePersianGulfWar:RecommendationsforResearchandInformationSystems,Washington,D.C.:NationalAcademyPress,1996.
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THECOMMITTEE'SCHARGE
Charge1
AssesstheeffectivenessofactionstakenbytheSecretaryofVeteransAffairsandtheSecretaryofDefensetocollectandmaintaininformationthatispotentiallyusefulforassessingthehealthconsequencesofmilitaryservicereferredtosubsection(a)[ofPL102-585,PersianGulf(PG)theaterofoperationsduringthePGW].
Thecommitteemakesfourrecommendations(recommendations13-16)inthisreportregardingthecollectionandmaintenanceofinformationthatispotentiallyusefulforassessingthehealthconsequencesofmilitaryserviceinthePGW.Theserecommendationssupportcompletionofcertaindatasets,promptreportingofresearchfindingsandsubmissionforpublicationinpeerreviewedjournals,strengthenedmedicalandepidemiologicresearchcapabilitiesofthearmedforces,andstrengtheningthedecision-makingprocessesforstudyselection.
Charge2
Makerecommendationsonmeansofimprovingthecollectionandmaintenanceofsuchinformation.
Thecommitteemakesfiverecommendations(recommendations1,4,and8-10)onthecollectionandmaintenanceofinformationonthehealthconsequencesofserviceinthePG.Wealsogiveconsiderableattentiontoinformationsystemsthatwouldbeusefulinfutureconflicts.TheserecommendationsarebasedlargelyonexperiencewithsystemsinplaceforthePGWthathaveshownsomegapsanddefectsthatcanberemedied.
Charge3
Makerecommendationsastowhetherthereis[a]soundscientificbasisfor
anepidemiologicstudyorstudiesofthehealthconsequencesofsuchservice,andiftherecommendationisthatthereis[a]soundscientificbasisforsuchastudyorstudies,thenatureofthestudyorstudies.
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Thecommitteebelievesthatthereisindeedasoundbasisforepidemiologicstudies,andeightrecommendationsfollow(recommendations2,3,5-7,and11-13).1However,thecommitteedoesnotrecommendanadditionalnationwideepidemiologicstudyofPGveterans,becausesuchastudyislikelytobeoflimitedscientificvalueatthistime.Thoselargestudiesthatarecurrentlyunderwayshouldbecompletedasquicklyaspossible,whilemeetinghighscientificstandards,includingahighresponserateandathoroughinvestigationofpotentialbiases,asrecommendedbelow.
FINDINGSANDRECOMMENDATIONS
Finding
Recentmilitarydeployments,especiallyinVietnamandinthePersianGulf,havedemonstratedthatconcernsaboutthehealthconsequencesofparticipationinmilitaryactionmayariselongafterdeploymenthasendedandthattheevaluationofthoseconcernsandtheprovisionofhealthcaretoaffectedpersonnelmaypresentformidablechallengesbothtoepidemiologistsandtomedicalcaregivers.Althoughsomeofthesechallengescanbeattributedtotheintrinsicdifficultyofevaluatingpoorlyunderstoodclustersofeventsthatwerenotamongtheexpectedconsequencesofcombatorofenvironmentalconditions,theyalsomaybeattributedinparttolimitationsofthesystemsusedtocollectandmanagedataregardingthehealthandservice-relatedexposuresofmilitarypersonnel.Nosystemofrecordkeepingcanbeexpectedtoprovidetheinformationneededtoaddresseveryunanticipatedresearchissue,includingthoseregardingthehealthconsequencesofmilitaryservice.Nevertheless,thecommitteehasidentifiedseveralpossibleimprovementsinthesystemsandpracticesforcollectinginformationonthehealthandservice-relatedexposuresofmilitarypersonnel.Suchchangeswouldincreasetheabilityofthemilitaryservicestopursueappropriateinvestigationsinthefuture.
Suchchangesalsowouldincreasethecapacityoftheservicestoevaluatetheefficacyofmobilization-supportinghealthservices(includingapproachesandmethodologiesfordiseasepreventionemployedbefore,during,andaftermobilization)andwouldaidinprovidingthebestpossiblemedicalcaretomilitaryservicepersonnelandveterans(Charge2).
Recommendation1.TheDepartmentofDefense(DoD),thebranchesofthearmedservices,andtheDepartmentofVeteransAffairs(DVA)
1Recommendation13hasbeencountedasapplicabletobothCharge1andCharge3,andthereforeappearswithboth.
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shouldcontinuetoworktogethertodevelop,fund,andstaffmedicalinformationsystemsthatincludeasingle,uniform,continuous,andretrievableelectronicmedicalrecordforeachserviceperson.Theuniformrecordshouldincludeeachrelevanthealthitem(includingbaselinepersonalriskfactors,everyinpatientandoutpatientmedicalcontact,andallhealth-relatedinterventions),allowlinkagetoexposureandotherdatasets,andhavethecapabilitytoincorporaterelevantmedicaldatafrombeyondDoDandDVAinstitutions(e.g.,U.S.PublicHealthServicefacilities,civilianmedicalproviders,andotherhealthcareinstitutions).Appropriateconsentandprotectionofindividualprivacymustbeconsideredforinformationobtainedandincluded.
Finding
ThenumberandvarietyofstudiesregardingconsequencesofthePGWarealreadyconsiderable.Todate,mosthealth-relatedstudiesspecificallyinvolvingPGWveteranshavefocusedonshort-termmentalhealthconsequencesofdeployment,theroleofcombatexposure,andotherstressorsexperiencedinthetheaterofoperationsand,toalesserextent,onproblemsrelatingtodemobilizationandreadjustmenttocivilianlifeamongreservistandNationalGuardpersonnel.Afewreportshaveincludedlimitedlongitudinalfollow-updataconcerningmenandwomenwhoservedinthePG.Importantinformationmaybegainedthroughlongerfollow-upofsomeofthesegroups,particularlysinceatleastoneofthesegroupswasfirsttoarriveinthetheater,andprecombatdataareavailable.Alsoneededarestudiesofriskfactorsinmoderndeploymentspredictiveofcombatstressreactions,posttraumaticstressdisorder(PTSD),andotherpsychiatricdisordersofmilitarypersonnelandveterans.Studiesrelevanttothetraumaofwarandtheensuingmentalhealthconsequencesshouldconcentratespecialattentiononimprovingeffortsinprevention,intervention,andfollow-up(Charge3).
Recommendation2.TheDoDandDVAshouldconductfurtherstudies,withappropriatestatisticalandepidemiologicalsupport,toidentifyriskfactorsforstress-relatedpsychiatricdisordersamongmilitarypersonnel(activeandreserve)andtodevelopbettermethodstobufferandamelioratethepsychiatricconsequencesofmoderntraining,deployment,combat,demobilization,andreturntodailyliving.
Recommendation3.StudiesbeingconductedbyDoDandDVAthathaveincludedlongitudinalfollow-upofthementalhealthofveterans
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whoservedinthePGshouldbesupportedwithcontinuedfollow-upafterappropriatepeerreviewofstudymethods.Follow-upinthesestudiesshouldbesufficienttoprovideatleastadecadeofinformationcomparingthementalhealthstatusofthosedeployedwiththosenotdeployed.
Finding
ThemilitarydominanceofU.S.forcesinthePGWincreasedtherelativesignificanceofphysicalandnaturalenvironmentalexposuresasimportantsourcesofpotentialmorbidityandmortality,comparedwithcombatinjuries.Thisislikelytorecurinfuturedeployments(Charge2).
Recommendation4.TheDoDshouldensurethatmilitarymedicalpreparednessfordeploymentsincludesdetailedattemptstomonitornaturalandman-madeenvironmentalexposuresandtoprepareforrapidresponse,earlyinvestigation,andaccuratedatacollection,whenpossible,onphysicalandnaturalenvironmentalexposuresthatareknownorpossibleinthespecifictheaterofoperations.
Finding
NationalGuardandreservecomponentpersonnelmaydiffersubstantiallyfromactivedutypersonnelinaverageage,leveloftraining,occupationalspecialties,familystatus,andreadinessfordeployment.Further,itisunclearwhethereitherpoliciesandproceduresorthemannerinwhichtheyareimplementeddiffersbetweenactivatedreserveorNationalGuardunitsandactivedutytroopsformobilization,deployment,demobilization,andreturn.Allofthesefactorsmayaffectthehealthconsequencesofdeployment(Charge3).
Recommendation5.Researchisneededtodeterminewhetherdifferencesinpersonalcharacteristicsordifferencesinpoliciesand
proceduresformobilization,deployment,demobilization,andreturnofreserves,NationalGuard,andregulartroopsareassociatedwithdifferentoradversehealthconsequences.Ifthereareassociations,strategiesnecessarytopreventorreducetheseadversehealtheffectsshouldbedeveloped.
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Finding
CompletedstudieshavedescribedthemortalityexperienceoftroopsdeployedtothePGduringtheperiodofdeploymentandinthe2-yearperiodafterdeployment.ThesestudieshavedocumentedaconsistentpatternofincreasedriskofdeathfromunintentionalinjuryforthecohortofdeployedtroopscomparedwiththosenotdeployedtothePG.However,deathratesfromdiseasewerenotsignificantlyincreased.ContinuedmonitoringandfurtherstudyofmortalityratesamongveteransofthePGWwillbeofvalueinassessingthelong-termhealthconsequencesofdeployment(Charge3).
Recommendation6.ThemortalityexperienceofPGveteransshouldcontinuetobemonitoredforaslongas30years,onaregularbasis,includingcomparisonswiththatofPG-eraveterans.(PG-eraveteranshavebeendefinedasthoseinmilitaryserviceatthetimeofthePGW,butassignedordeployedelsewhere.)Researchinvestigatorsshouldfocusonthereportedexcessmortalityfromunintentionalinjury,onmortalityfromspecificillnesses,andonevidenceofelevation(orreduction)intheriskofdeathfromothercauses.
Recommendation7.TheDVAshouldexertgreaterefforttoimproveunderstandingofthereasonsforexcessmortalityfromunintentionalinjury.Detailedevaluationisneededbeyonddeathcertificatedataconcerningthecircumstancessurroundingfatalinjurythroughmorefocusedcase-controlstudiestoidentifybothindividualriskfactorsandremediablecauses.
Finding
ThearmedservicesandtheDVAtogetheraredevelopingasharedbasicepidemiologicaldatasystem,theDefenseMedicalEpidemiologicalDatabase(DMED)(Charge2).
Recommendation8.TheDMEDsystemshouldbecontinued,
expandedasplanned,expeditedtodeveloptheproposedintegratedinformationmanagementsystem,linkedtootherkeysystems,andevaluatedregularly.
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Finding
ConsiderableefforthasbeendevotedbyDoDtothedevelopmentofaTroopExposureAssessmentModel(TEAM)fordescribingthePGWexperienceofveterans.ThishasincludedthecompletionofaninformationsystemdesignedtoestablishthegeographiclocationofeachunitfromJanuary15,1991,untiltheunitdepartedfromtheGulftheater.Thissystemhasthepotentialtobelinkedtodataonregionalenvironmentalconditionsbutwillnecessarilybedevoidofmostindividualdata(suchaspesticideexposureorindividualhealthriskfactors)(Charge2).
Recommendation9.TheDoDshouldcompletedevelopmentofinformationsystemstoexpeditiouslyanddirectlypinpointunitlocationsatahighlevelofdisaggregationinspaceandtime(thatis,finedetail)andtodocumentlocalenvironmentalconditions,includingappropriatedataqualitychecks,withdirectdataentryintothesystem.Thereislikelytobeaneedforasimilarinformationsystemduringandafteranyfutureconflict,andDoDshouldprepareandcontinuallyupdateplansforsuchanonpapersystem.Amanualforuseoftheinformationsystemsbyresearchinvestigatorsshouldbecompiled,withthestrengthsandlimitationsidentified.
Finding
Thepowerandcomplexityofanalysesbasedonspace-timegeographicalinformationsystem(GIS)datarequirecarefulattentiontodataqualityandthelimitsimposedbyvariousdataitems.Qualityimprovementandassessmentoflimitsarecontinuousprocessesanddependondetailedevaluationofdataneedsforspecificanalyticquestions(Charge2).
Recommendation10.ForeveryspecificquestionposedtothecurrentTEAM,DoDshouldassessthestrengthsandlimitationsoftheTEAM
asaresourceforevaluatingthehealthsignificanceofgeographicallydefinedexposuresoftroops,includingthoseinthePGWandthoseinconflictsthatmaydevelopinthefuture.EvaluationsandrecommendationsforpossiblemodificationoftheTEAMshouldbereportedtothePGCoordinatingBoard,ResearchWorkingGroup.
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Finding
GiventheunprecedentednumbersofwomenservinginthePG,especiallythoseinlargelynewroles,includingcombatsupport,itisimportanttospeciallyevaluatethehealthconsequencesandneedsforhealthservicesofwomenwhoservedinthePG.PreliminaryfindingsfromstudiesbeingconductedattheBostonVAMedicalCenter(VAMC)indicatethatadditionalresearchinthisareaisneeded.Additionalresearchisalsoneededonthehealtheffectsofhavingmaleandfemalepersonnelservetogetherincombatorunderthreatofcombat(Charge3).
Recommendation11.TheDoDandDVAshouldensurethatstudiesofthehealtheffectsofdeployment,includingeffectsonPGWveterans,includeevaluationofexposures,experiences,andsituationsofbothwomenandmen,withattentiontotheirage,priormilitaryservice,maritalandparentalstatus,andothergender-specificparameters.
Recommendation12.TheDoDandDVAshouldconductstudiesofthehealthconsequencesofassigningmenandwomentoservetogetherincombatorunderthethreatofenemyaction.Suchworkshouldbeundertakenwithafocusonpreventionandameliorationofanyaddedstresses.
Finding
Severalimportantstudiesarecurrentlyunderway.Worthwhiledataarebeingcollectedandprepared,andthestudiesshouldbecompletedpromptly,withthenecessarypersonnelandfundingtocollecttheadditionaldataneeded,toconductappropriateanalyses,andtoevaluatepotentialbiases.Findingsfromthesestudiesarelikelytoprovideleadsastowhetherornotadditionalresearchalongtheselinesisrequiredtoproducemorespecificfindings(Charges1and3).
TheNavalHealthResearchCenteratSanDiegohasundertakena
seriesofstudiesunderthegeneraltitleof''EpidemiologicStudiesofMorbidityAmongGulfWarVeterans:ASearchforEtiologicAgentsandRiskFactors."ThesestudiesholdpromiseforansweringsomeimportantquestionsaboutthehealthofPGWveteransafterdemobilizationandaboutthepossibilitythatveteransandtheirspousesmayexperienceanexcessriskofadversepregnancyoutcomesasaresultofserviceinthePGW.Thestudiesarebeingcarriedoutwithcare,excellentplanning,andproperpiloteffortstodeterminefeasibility.
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Uponcompletion,thesestudiesshouldprovideimportantguidanceconcerningwhetherveteranshaveexperiencedhospitalizationatratesinexcessoftheirnondeployedpeers,havedevelopedspecificsymptomsorillnessesrelatedtotheirPGWexperience,orhaveexperiencedrisksthathaveresultedinadversereproductiveoutcomesrelatedtotheirserviceintheGulf.
Recommendation13a.TheNavalHealthResearchstudiesinSanDiegoshouldbecompletedandresultspublishedasdesignedandscheduled.
AlthoughtherearesignificantproblemswiththeDVANationalHealthSurvey,theinvestigatorshavedesignedadditionalphasesofthestudythatwillbeimportanttocomplete.Thephysicalexaminationsandfollow-upofnonrespondentstothemailsurveywillbeanimportantsteptowarddescribingpotentialbiasesandevaluatingsignsandsymptomsofbothPGandPG-erastudyparticipants.
Recommendation13b.TheDVANationalHealthSurveyshouldbecompletedandresultspublishedasdesignedandscheduled.
TheDVA-DoDstudythatwasdesignedtoexaminepredictorsofenrollmentintheDVAPGHealthRegistry(PGHR)mayprovideusefulinformationastowhatobjectivelymeasurablefactorscontributetoselfselectionintotheregistry.Inadditiontotheproposedanalysisofassociationsamongdemographics,pasthealthexperiences,andhealthbehaviorsaspossiblepredictorsofenrollment,informationontheeligibilityofindividualsforhealthcare,aswellasthetypeofhealthcare,couldgenerateadditionalhypothesestobeinvestigated.
Recommendation13c.EvaluationofpredictorsofenrollmentintheDVAPGHRshouldbepromptlycompletedandresultspublished.Included,ifpossible,shouldbeinformationontypeofcarerequested,required,andreceived.
Finding
Thearmedforceshavehadsmallbuthigh-qualityandeffectivecapabilitiesinepidemiology.Recentcutbackshavereducedthesecapabilities,withpotentiallyseriouseffectsonbothmilitarypreparednessandthehealthcareofveterans.TheTheaterAreaMedicalLaboratory(TAML)isanexampleofhowspecialistscanrespondrapidlytopotentialhealthproblemsoftroopsdeployedinvariousareasof
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theworldandprovideimmediateandusefulinformationnecessarytomaintainthemilitaryreadinessofthearmedforces.Inaddition,well-trainedepidemiologistsandpreventivemedicinespecialistsarenecessaryforconductingtherelevantpopulation-basedepidemiologicstudies,withcomprehensiveexposureassessment,thathavethegreatestlikelihoodofbeinginformativeaboutthehealthconsequencesofanyfuturedeployment.Suchcapabilityshouldpermitstudiesthatextendbeyondthetimeofanindividual'sactivedutyserviceandthatarecapableofrespondingtoquestionsofdelayedeffectsthatmayemergeonlyyears,orevendecades,afteramilitaryoperation(Charge1).
Recommendation14.Theepidemiologiccapabilitiesofthearmedforcesshouldbestrengthenedratherthanreduced.Thecommandstructureshouldbekeptinformedaboutthereasonsforandtheresultsofthisrecommendationanditsrelevancetomilitarypreparednessandeffectiveness,andshouldbeencouragedtosupportappropriateepidemiologicworkinthetheaterofoperationsandinthepostdeploymentperiod.
Finding
MuchgoodworkonsymptomcomplexesandothermattersdiscussedinthisreporthasbeendonebyDoD,DVA,andtheircontractors.However,itisevidentfromthereferencescitedinthisreportthatmanyareinthe"grayliterature"-availabletothosewhoknowtheyexistandhowtoaskforthem,butnotpublishedintheopen,peer-reviewedscientificliteraturewheretheywillbefullyindexedandreadilyavailable,withsomeassurancethattheymeetatleastminimalscientificstandards.Eventhiscommittee,withthecontactsandexpertiseitdevelopedovertime,haddifficultyinidentifyingandobtainingsomeofthesereports.Thecommitteealsoisconcernedaboutthehighcostofmuchrecentresearchandthenecessityfor
maximizingthenation'soverallreturnonthatinvestment.Insummary,thecommitteebelievesthathealthrelatedresearchisnotfinalizeduntilitispublishedandreadilyaccessibleinpeer-reviewedjournals(Charge1).
Recommendation15.TheDoDandDVAshouldadoptapolicythatinternalandcontract-supportedreportsonhealthresearchwillbesubmittedforpublicationinthepeer-reviewedscientificliteratureinatimelymanner.
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Finding
SomeresearchdirectedtowardreportsofunexplainedillnessesafterthePGWwasflawedinthequestionsposed,populationsstudied,orresearchdesign.Webelievethatthesedefectscouldhavebeenidentifiedbeforeresearchprojectswerefundedifrequestsforproposalshadbeenannouncedgenerallyandhadbeenopentothescientificcommunityatlargeandiffullydevelopedresearchproposalshadbeenreviewedbypanelsofqualifiedexpertpeers.Someresearchwasannouncedandreviewedinthismanner,butmuchmorecouldbesotreated,tothebenefitofbothveteransandthepublic(Charge1).
Recommendation16.TheCongress,DVA,andDoDshouldadoptapolicythatunlesstherearewell-specified,openlystatedreasonstothecontrary,requestsforproposalsforresearchrelatedtounexplainedillnessesorotherneededhealth-relatedresearchwillbepubliclyannouncedandopentothescientificcommunityatlarge,thatproposalswillbereviewedbypanelsofappropriatelyqualifiedexperts,andthatfundingwillfollowtherecommendationsofthoseexperts.
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AppendixDEvaluationoftheU.S.DepartmentofDefensePersianGulfComprehensiveClinicalEvaluationProgram:OverallAssessmentandRecommendations*
1.)OVERALLASSESSMENTOFTHECCEPGOALSPROCEDURES:
TheComprehensiveClinicalEvaluationProgram(CCEP)clinicalprotocolisathorough,systematicapproachtothediagnosisofawidespectrumofdiseases.AspecificmedicaldiagnosisordiagnosescanbereachedformostpatientsbyusingtheCCEPprotocol.TheDepartmentofDefense(DoD)hasmadeconscientiouseffortstobuildconsistencyandqualityassuranceintothisprogramatthemanymedicaltreatmentfacilities(MTFs)andregionalmedicalcenters(RMCs)acrossthecountry.
Thecommitteeisimpressedwiththequalityofthedesignandtheefficiencyoftheimplementationoftheclinicalprotocol,theconsiderabledevotionofresourcestothisprogram,andtheremarkableamountofworkthathasbeenaccomplishedinayear.Thehighprofessionalstandards,commitment,anddiligenceofthephysiciansinvolvedintheCCEPattheRMCswerereadilyapparentatthethreecommitteemeetings.ThecommitteecommendstheDoDforitseffortstoprovidehigh-qualitymedicalcareintheCCEPandthesuccessthatithasachievedtodateindevelopingtheinfrastructurenecessarytoefficientlycontact,schedule,refer,andtrackthousandsofpatientsthroughthesystem.
Overall,thesystematic,comprehensivesetofclinicalpracticeguidelinessetforthintheCCEPareappropriate,andtheyhave
assistedphysiciansinthedeterminationofspecificdiagnosesforthousandsofpatientsacrossthecountry.
*ThisappendixisexcerptedfromtheInstituteofMedicinereport,EvaluationoftheU.S.DepartmentofDefensePersianGulfComprehensiveClinicalEvaluation,Washington,D.C.:NationalAcademyPress,1996.
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2.)GENERALRECOMMENDATIONSFORTHEIMPLEMENTATIONOFTHECCEP:
2.1.)ReferralsofPatientsfromPhaseItoPhaseIIoftheCCEP:
2.1.1.)StructureandrevisetheCCEPprotocolandlogisticstoallowthemajorityofpatientstoreceiveafinaldiagnosisbyPhaseI:
Currently,themajorityofpatientsdonotreceiveafinaldiagnosisuntilPhaseII,yetsomeofthesepatientshavestraightforwardmedicalproblems.TheCommitteerecommendsthatfinaldiagnosescouldbereachedinPhaseIifmorediagnosticresourcesaremadeavailable.ThismajorchangewouldrequiretheavailabilityofsubstantialnumbersofinternistsorfamilypractitionersatMTFstoperformcomprehensiveevaluations.Itwouldalsorequirebetter,moreconsistentexplanationstoMTFphysiciansaboutthepurposesandproceduresoftheCCEP.ItwouldrequireregionalmedicalcenterphysicianstoprovideadequatequalityassuranceofMTFwork-upsandtimelyfeedbacktoMTFproviders.
OnJanuary17,1995,theDoDadoptedthesesuggestionsbysettinggoalsthatabout80%ofpatientswouldreceiveadefinitivediagnosisatanMTFlevel.Forsomepatients,thischangehasrequiredspecialtyconsultationsattheMTF,aswellasadvicefromanRMCphysician.ThesechangesnecessitatedanenhancedqualitycontrolrolebytheRMCphysicianandprompt,appropriatefeedbacktotheMTFphysician.
2.1.2.)Curtaildiagnosticwork-upsinpatientsnotseriouslydisabledwithminorcomplaints:
Initially,patientswhodonotaccepttheirinitialdiagnosiscouldrequestacontinuedevaluationallthewaythroughPhaseII.The
Committeerecommendsthatdiagnosticwork-upsinpatientsnotseriouslydisabledbutwithminorcomplaintsshouldbecurtailed.Alternatively,ifaphysicianhasmadeadefinitivediagnosisandappropriatetreatmenthasbeengiven,theevaluationwouldbeconcluded.
OnJanuary17,1995,theDoDimplementedthesuggestionsthatreferraltoPhaseIIbemadeonthebasisoftheclinicaljudgmentoftheprimarycarephysician,andpatientswerenolongerpermittedtoselfrefertoanRMC.
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2.1.3.)Requireadditionaleffortstoprovidemorecareattheprimarycarelevel:
TheCommitteeencourageseffortstoprovidemorecareattheprimarycarelevel,becausetheywillenhancethecontinuityofcareandwillfostertheestablishmentofanongoingtherapeuticrelationship.
2.1.4.)Continuereferralofsubgroupsofpatientswhoseillnessesaredifficulttodiagnose:
PatientswhoseillnessesaredifficulttodiagnoseshouldcontinuetobereferredtoPhaseIIatanRMC.ThedecisiontorefertoPhaseIIshouldbebasedontheclinicaljudgmentoftheprimarycarephysician,which,inturn,wouldbedependentontheclarityofthepatient'sdiagnosesandthefeasibilityoftheproposedtreatmentprogramattheMTFlevel.TheDoDshouldcontinueitsgoalofenhancedaccessibilityofRMCphysicianstoallowregularconsultationswithMTFprimarycarephysiciansonpatientswithmorecomplexdiagnoses.
2.2.)SystematicGuidelinesforPsychiatricReferralsandAdequacyofPsychiatricResources:
2.2.1.)DevelopexplicitguidelinesfortheidentificationofPhaseIpatientswhowouldbenefitfromapsychiatricevaluation:
CCEPphysicianshavenotedtheneedforstandardizedguidelinesforscreening,assessing,evaluating,andtreatingpatients.SuchPhaseIguidelinesshouldbedevelopedtohelpensureadequatepsychiatricresourcesforboththeinitialevaluationandlong-termfollow-upcare.
2.2.2.)Alertprimarycarephysiciansaboutthehighprevalenceofpsychiatricdisorders:
TwomethodsthathavebeenproposedbyRMCphysicianstoexpeditetheschedulingofpsychiatricevaluationswouldbe(1)themore
frequentuseofcivilianpsychiatristsand(2)considerationofusingPh.D.levelpsychologists,aswellaspsychiatrists,whennecessary.
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3.)SPECIFICOBSERVATIONSOFANDRECOMMENDATIONSFORTHEIMPLEMENTATIONOFTHECCEP:
3.1.)AnalysisandInterpretationoftheCCEPResults:
3.1.1.)SymptomsanddiagnosesintheCCEPpopulation:
3.1.1.1.)NoevidencehasbeenfoundthattheDoDhasbeentryingtoavoidreachingasingleunifyingdiagnosis:
ThecommitteefoundnoevidencethattheDoDhasbeentryingtoavoidreachingasingle"unifying"diagnosiswhenaplausibleonewasavailable.A"unifying"diagnosisisdefinedhereasasinglediagnosisthatcouldexplainmostorallofapatient'ssymptoms.
3.1.1.2.)Signsandsymptomsinmanypatientscanbeexplainedbywell-recognizedconditions:
OneinterpretationoftheCCEPresultsisthatthesignsandsymptomsinmanypatientscanbeexplainedbywell-recognizedconditionsthatarereadilydiagnosableandtreatable.ThecommitteeconcludesthatthisisamorelikelyinterpretationthantheinterpretationthatahighproportionoftheCCEPpatientsaresufferingfromaunique,previouslyunknown"mysterydisease."
3.1.1.3.)Providemoredetailedinformationonspecificdiagnosesinfuturereports:
Byprovidingmoredetailedinformationonspecificdiagnosesinitsfuturereports,theDoDmighthelpcorrecttheimpressionsamongthegeneralpublicthatexistaboutthehighdegreeofprevalenceofa"mysterydisease"oranew,unique"PersianGulfSyndrome."
3.1.1.4.)Investigatethediagnosisinpatientswithdisabilityprocessingactions:
DisabilityprocessingactionsintheServices'PhysicalDisability
ProcessingSystemshavebeencompletedfor246ofthe10,020CCEPpatients.TheDoDhasnotprovidedanydataabouttheirdiagnosesortheirreasonsformedicalseparationfromthemilitary.ThecommitteerecommendsthattheDoDinvestigatethediagnosesinthisgroupofpatientsinfuturereports,aswellaswhetherornotthedisorderscouldhavebeencausedorexacerbatedbyserviceinthePersianGulf.
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3.1.1.5.)Don'tviewCCEPresultsasestimatesoftheprevalenceofdisabilityrelatedtoPersianGulfservice:
ManyotherindividualswhoservedinthePersianGulfhaveleftactiveserviceand,hence,arenoteligiblefortheDoD'sCCEP.SomeoftheseveteransmayhavedisabilitiesrelatedorunrelatedtotheirserviceinthePersianGulf,andthosewithdisabilitiesmightbemorelikelytohaveleftactiveservice.Forthesereasons,theCCEPresultsshouldnotbeviewedasestimatesoftheprevalenceofdisabilityrelatedtoPersianGulfservice.
3.1.2.)EvidenceofaNew,UniquePersianGulfSyndrome:
3.1.2.1.)ThereisalackofclinicalevidenceofauniquePersianGulfSyndrome:
ThecommitteeagreeswithDoDthatthereiscurrentlynoclinicalevidenceintheCCEPofapreviouslyunknown,seriousillnessamongPersianGulfveterans.IftherewereaneworuniqueillnessorsyndromeamongPersianGulfveteransthatcouldcauseseriousimpairmentinahighproportionofveteransatrisk,itwouldprobablybedetectableinthepopulationof10,020CCEPpatients.Ontheotherhand,ifanunknownillnessweremildoraffectedonlyasmallproportionofveteransatrisk,itmightnotbedetectableinacaseseries,nomatterhowlarge.
3.1.2.2.)SharetheentireCCEPdatasetwithqualifiedresearchersoutsideoftheDoD:
ThecommitteeencouragestheDoD'splantosharetheentireCCEPdatasetwithqualifiedresearchersoutsideoftheDoDwhomightbeabletoundertakethekindofresearchwiththemethodologicalsophisticationthattheidentificationofanewsyndromewouldrequire.
3.1.3.)PotentialRelationshipofIllnessesinCCEPPatientstoServiceinthePersianGulf:
3.1.3.1.)Discusstheissueofcausalityexplicitlyandunambiguouslyinitsfuturereports:
PhysiciansinvolvedwiththedevelopmentandtheadministrationoftheCCEPhave,invariouspublicpresentations,acknowledgedthatsomeCCEPpatientshavedevelopedillnessesthataredirectlyrelatedtotheirserviceinthePersianGulf.TherecentDoDreporton10,020CCEPparticipants,however,only
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touchesonthisissueindirectly.ThecommitteeencouragestheDoDtodiscusstheissueofcausalityexplicitlyandunambiguouslyinitsfuturereports.SuchadiscussionmighthelptoalleviatethecurrentclimateofconfusionandmistrustthatexistsamongsomePersianGulfveteransandthegeneralpublic.
3.1.3.2.)Determinethetimingoftheonsetofdisease:
ThecommitteerecommendsthattheDoDattempttodeterminethetimingoftheonsetofdisease,especiallyforpatientswhohavesignificantimpairments.ReviewofmilitaryorcivilianmedicalrecordsthatpredateenrollmentintheCCEPmayprovidecontemporaneousdocumentationoftheonsetofsymptomsinsomepatients,especiallyifthesymptomsareserious.Inaddition,itisimportanttodeterminewhetherserviceinthePersianGulfhascontributedtotheexacerbationofpreexistingdiseasesinsomeCCEPpatients.
3.1.4.)ComparisonoftheCCEPPopulationwithOtherPopulations:
3.1.4.1.)Becautiousaboutcomparisonwithotherpopulations:
Initsmostrecentreport,theDoDcomparesthesymptomsanddiagnosesintheCCEPpopulationwiththesymptomsanddiagnosesinseveralcommunity-basedandclinicallybasedpopulations.Inthecommittee'sview,interpretationsbasedoncomparisonswithotherpopulationsshouldbemadewithgreatcautionandonlywiththeexplicitrecognitionofthelimitationsoftheCCEPasaself-selectedcaseseries.TheCCEPwasnotdesignedtoanswerepidemiologicalquestions,suchashowthefrequenciesofcertaindiagnosescomparebetweentheCCEPpopulationandacontrolpopulation.Instead,itwasdesignedasamedicalevaluationandtreatmentprogram.Indeed,theresearchaimsoftheCCEPdonotappeartobestatedexplicitly,nordoesthereappeartobeaconcreteepidemiologicalstudyplan.
Withoutresearchhypotheses,itisnotpossibletojudgewhetheranyparticularcomparisongroupisappropriate.Eachindividualpopulationshouldbedescribedtopreventconfusion.
3.1.4.2.)It'sdifficulttoestablishcausalrelationshipsbyrelyingonCCEPdataalone:
Itwouldbeextremelydifficulttoestablishcausalrelationshipsortoidentifyandcharacterizeanew"PersianGulfSyndrome"definitivelybyrelyingondatafromtheCCEPalone.Thelatitude
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permittedintheclinicalexaminationprogramconflictswiththerigornecessarytoansweranepidemiologicalquestion.
3.1.4.3.)ConsidertheCCEPdatatohavehighclinicalutility:
TheCCEPdatadohaveconsiderableclinicalutility,andtheycouldbeusedtoaddressmanyimportantquestionsfromadescriptiveperspective.Manycaseseriescouldbederivedfromthesedata.Inaddition,theresultsoftheclinicalexamscouldprovideguidanceintheselectionofresearchquestionsandinthedesignoffutureepidemiologicalresearch.TheCCEPfindingscouldbeusedtogenerateepidemiologicalquestionsonothertypesofdiseasesthataremuchmorefrequentintheCCEPpopulation,suchasmusculoskeletaldiseases.
3.2.)SpecificMedicalDiagnosis:
3.2.1.)PsychiatricConditions:
3.2.1.1.)Makepatientsawareofpsychiatricconditionsandtheirprevalenceandmorbidity:
Patientsneedtounderstandthatpsychiatricconditionsanddisordersarerealdiseasesthatcauserealsymptomsandthatdiagnosesaremadewithobjectivecriteriaandarenotmerely''labels"appliedbecausephysicalabnormalitieswerenotfound.TheCCEPpatients,aswellastheirprimarycarephysicians,alsoneedtounderstandtheprevalenceofandtheconcomitantmorbiditythatresultfrompsychiatricdisordersinthegeneralpopulation(majordepression,forexample).Finally,theCCEPpatientsneedtobeawarethateffectivetreatmentsthatactuallyamelioratesymptomsexistformanyofthesedisorders.
3.2.1.2.)Emphasizeeffectsanddiagnosisofpsychosocialstressors:
Initsfuturereports,theDoDisencouragedtoemphasizethat
psychosocialstressorscanproducephysicalandpsychologicaleffectsthatareasrealandpotentiallydevastatingasphysical,chemical,orbiologicalstressors.TheDoDshouldalsoemphasizethatthorougheffortstodiagnosepsychiatricconditionsintheCCEPpopulationmayleadtoappropriate,successfultreatments.
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3.2.1.3.)IdentifypeoplewithriskofdevelopingdepressionorPost-TraumaticStressDisorder(PTSD):
ThecommitteeisparticularlyconcernedabouttheCCEPpatientswhohavedevelopedorwhoareatriskofdevelopingmajordepressionorPTSD.Thesepeopleneedtobeidentifiedandprovidedwithsomeformofpreventiveintervention.
3.2.1.4.)Improvestandardizationofpsychiatricevaluations:
ThecommitteerecommendsthattheDoDconsidermethodsofimprovingthestandardizationofthepsychiatricevaluationsintheCCEP.TheDoDshouldconsiderestablishingdetailedguidelinesforthepsychiatricevaluationsandshouldattempttoobtaingreaterstandardizationoftheseevaluationsamongthevarioushospitalsacrossthecountry.Theseguidelinescouldprovidesuggestedproceduresfortheuseofselectedself-reportinstrumentsfortheassessmentofthemostcommonlydiagnoseddisorders,aswellasproceduresformorein-depthstructuredclinicalinterviewswhenindicated.
3.2.1.5.)Documentandinvestigatetheonsetandcourseofsymptomsandpsychosocialstressors:
Itwouldbeespeciallyimportanttodocumenttheonsetandcourseofsymptomsandtoinvestigatetheirpossiblelinkwithpsychosocialstressorsassociatedwithmobilizationandreturnhome,aswellaswithservice-relatedexposuresinthePersianGulfregion.ThisassessmentwouldrequireanadditionalsetofquestionstosupplementthequestionnairecurrentlyusedinPhaseIoftheCCEP.Thethoroughassessmentofpsychosocialstressorsisessentialinformationfortreatmentplanningforpatientswithcomplex,chronicsymptoms.
3.2.1.6.)Standardizeneuropsychologicalevaluations:
Standardizationoftheneuropsychologicalevaluationsisarelatedconcern.Theneuropsychologicalmethodsvaryfrompencilandpapertestingatsomesitestocomputer-administeredtestingatothersites.Onemethodofachievingabetterconsensusistoconveneameetingattendedbyonepsychiatristandoneneuropsychologistfromeachcentertoattempttostandardizetheirmethods.
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3.2.1.7.)Standardizeclassificationandcodingofdiseases:
InadditiontothestandardizationofpsychiatricevaluationsintheCCEP,theclassificationandcodingofthesediseasesshouldalsobestandardized.
3.2.1.8.)Documentheadachecategoriesdifferently:
TheclassificationofdifferenttypesofheadachesintothreeseparatecategoriesmaybeconsistentwithICD-9codingrules,buttheDoDshouldalsoreportaspecialtabulationthatcombinesallheadachesintoonegroup.
3.2.1.9.)Addexplicitwritteninstructiononmedicalrecordkeepingandcoding:
MoreexplicitwritteninstructionscouldbeaddedtotheCCEPguidelinestohelppreventthemostfrequentproblemsfoundinthemedicalrecordkeepingandcoding.Committeecommentsaboutinconsistenciesaremainlyaimedatthequalitycontrolnecessaryforaccuratereportingofsummarydataratherthanatthequalityofthemedicalcareitself.
3.2.1.10.)Expanddiscussionofpsychologicalstressors:
DoDshouldconsiderexpandingdiscussionofthepsychologicalstressorsthatwerepresentduringthePersianGulfWar.
3.2.1.11.)UtilizeresultsofongoingstudiestoreviseCCEP:
ItispossiblethattheDoDwillbeabletousetheresultsofongoingepidemiologicstudiesonpsychiatricconditionstorevisetheCCEP,thatis,torevisethestandardizedquestionnairesortoaddordeletetargetedlabtestsorspecialtyconsultations.Inaddition,theCCEPcliniciansmaybeabletoutilizetheseresultsinthecounselingandtreatmentoftheirpatients.Theseresultsmayalsobeusefulforthe
DoDinitsplanningtominimizetheeffectsofpsychosocialstressorsinfuturedeploymentsthroughtheuseofpreventivemedicineinterventions.
3.2.2.)MusculoskeletalConditions:
3.2.2.1.)Providemoredetailsofdiagnosticcategorizationofmusculoskeletalconditions:
ThedraftandfinalDoDreportson10,020CCEPpatientsdonotprovideadequatedetailsfortheIOMcommitteetomakeathoroughevaluationofthediagnosticcategorizationofmusculoskeletal
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conditions.Moreexplanationaboutthediagnosticaspectsofthesemusculoskeletalconditionswouldbeuseful,forexample,informationonsingle-jointinvolvementversusmultijointconditionsorarticularversusnon-articularconditions.Inaddition,detailsondiseaseseverityanddiseaseactivitywouldbeuseful.
3.2.2.2.)Placemoreemphasisonmusculoskeletalconditions:
TheDoDandtheDVAshouldconsiderplacingmoreemphasisonresearchonmusculoskeletalconditions,sincethesearethemostprevalentdisordersamongtheCCEPpopulations.
3.2.3.)Signs,Symptoms,andIll-DefinedConditions:
3.2.3.1.)ClarifytypesofdisordersincludedintheICD-9category:
ThecommitteerecommendsthatinfuturereportstheDoDattempttoclarifythetypesofdisordersthatareincludedintheICD9categoryofsigns,symptoms,andill-definedconditions(SSIDC).Individualswiththesesigns,symptoms,andill-definedconditionsshouldbeevaluatedinarigorousmanner,justasindividualswithanyothersymptomsareevaluated.
3.2.4.)InfectiousDiseases:
3.2.4.1.)Infectiousdiseaseisnotafrequentcauseofseriousillness:
TheIOMcommitteeconcludesthatinfectiousdiseasesarenotafrequentcauseofseriousillnessintheCCEPpopulation.
3.2.4.2.)Veteransarenotlikelyafflictedwithsomepreviouslyunknownpathogen:
Onthebasisofthecurrentevidence,itisunlikelythatasignificantproportionofPersianGulfveteransareafflictedwithsomepreviouslyunknownpathogenthatisevadingthecurrentdiagnosticefforts.
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3.2.5.)ChronicFatigueSyndrome,Fibromyalgia,andMultipleChemicalSensitivity:
3.2.5.1.)Estimatingprevalenceofchronicfatiguesyndrome,fibromyalgia,andmultiplechemicalsensitivityisdifficult:
TheIOMcommittee'sreviewoftheCCEPprotocolsuggeststhatdataonchronicfatiguesyndrome(CFS),fibromyalgia(FM),andmultiplechemicalsensitivity(MCS)mayhavebeencollectedbyvariousdiagnosticmethods.Forthisreason,itisnotpossibletoestimatetheprevalenceoftheseconditionsfromtheCCEPdata.
3.2.5.2.)CollectdatausingestablisheddiagnosticcriteriaforCFSandFM:
Intheclinicalevaluations,datashouldbecollectedbyusingestablisheddiagnosticcriteriaforCFSandFM.
3.2.5.3.)EstablisheddiagnosticcriteriadonotexistforMCS:
AwidelyacceptedsetofdiagnosticcriteriadoesnotexistforMCS.Consequently,themedicalevaluationinCCEPcannotbeexpectedtodiagnosetheclinicalsyndromeofMCS.
3.2.5.4.)IncludeCFS,FM,andMCSinongoingandfutureepidemiologicalresearchstudies:
Ifmoreistobelearnedabouttherelationshipbetweenthesedisorders(CFS,FM,andMCS)andPersianGulfservice,theyshouldbeincludedamongtheepidemiologicalresearchstudiesthatareongoingorplannedforthefuture.
3.2.5.5.)Continuethoroughworkuptodiagnosesleepdisturbancesandfatigue:
Becauseofthethorough,systematicworkupmandatedintheCCEP,manydisordersthatcouldcontributetosleepdisturbanceandfatigue
havebeendiagnosed.Thesediligenteffortstounmaskoccultmedicalproblemsthatcouldsubstantiallycontributetofatiguehavebeenproductiveandshouldcontinue.
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3.3.)UseoftheCCEPResultsforEducationImprovementsintheMedicalProtocolandOutcomeEvaluations:
3.3.1.)UseoftheCCEPResultsforEducation:
3.3.1.1.)ContinuepublicreleaseofanalysisresultsoftheCCEPonanongoing,periodicbasis:
TheIOMcommitteeencouragestheDoDtocontinuetoreleaseitsanalysisoftheresultsoftheCCEPonanongoing,periodicbasis.Severalaudiencesthatwouldbeinterestedintheseresultsincludeactive-dutymembersoftheservice,veterans,membersoftheU.S.Congress,thelaymedia,aswellasmilitary,DVA,andcivilianmedicalandpublichealthprofessionals.TheCCEPmedicalfindingswouldalsobeofinteresttophysiciansintheDVAsystemandinthegeneralcommunity.
3.3.1.2.)DistributeCCEPfindingstoallprimarycarephysiciansatMTFsandRMCs:
ThemedicalfindingsoftheCCEPshouldbedistributedpromptlytoallprimarycarephysiciansattheMTFsandRMCs.Thiswouldprovidefeedbackontheirdiagnosticdecision-making.InformationonthefrequenciesofparticularsymptomsandtheirspecificdiagnosesmadeintheCCEPpopulationcouldbeuseful,forinstance,indevelopingadifferentialdiagnosisforindividualpatients.
3.3.1.3.)DevelopamoreconciseversionoftheDoDreportforactive-dutyservicepersonnelandveterans:
AmoreconciseversionoftheDoDreporton10,020patients,writteninnontechnicallanguageandwithclearlystatedconclusions,shouldbedevelopedforatargetaudienceofactive-dutyservicepersonnelandveterans.IftheDoDdevelopedanddistributedafactsheetornewsletteraimedatPersianGulfveterans,theinformationonthe
CCEPwouldbemoreaccurateandmorecomprehensivethanmostreportsinthegeneralnewsmedia.ThiswouldalsoprovideanadditionalopportunitytonotifythereadersabouttheavailabilityofthemedicalexamintheCCEP,thehotlinenumber,andtheeligibilitycriteria.
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3.3.1.4.)Developamorecomprehensivedocumentdescribingpotentialexposuresinmoredetail:
TheDoDshouldalsoconsiderdevelopingforclinicaluseintheCCEPamorecomprehensivedocumentthatdescribesthemanypotentialexposuresinmoredetail.Anydocumentthatisprepared,however,mustmakeclearwhatisknownandwhatisunknownabouttherelationshipbetweenthesestressorsandthephysicalorpsychologicalconsequences.
3.3.2.)UseoftheCCEPResultstoImprovetheMedicalProtocol:
3.3.2.1.)UseCCEPexaminationresultstoimprovestandardizationpractices:
TheDoDnowhasresultsontheexaminationsofmorethan10,000CCEPpatients,whichcouldbeusedtoimprovethestandardizedquestionnaires,labtests,andspecialtyconsultations.
3.3.2.2.)Refinequestionsrelatedtopotentialpsychologicalstressors:
MorerefinedquestionsrelatedtopotentialpsychologicalstressorscouldbeaddedsystematicallytothePhaseImedicalhistory.TheCCEPphysiciansmightfindthisinformationusefulindiagnosingandcounselingtheirpatients.Inaddition,itmaybepossibletoidentifypatientswhoareatincreasedriskofpsychologicalproblemsonthebasisoftheirexperiencesinthewar.PerhapsexplicitquestionsondeathexposureandotherknownriskfactorscouldbeaddedtothePhaseIquestionnaire.
3.3.2.3.)DetermineiflabtestsorspecialtyconsultationsshouldbeaddedtoPhaseI:
TheCCEPresultsshouldbeanalyzedtodeterminewhethertherearelabtestsorspecialtyconsultationsthatshouldbeaddedsystematicallytoPhaseItoincreaseitsdiagnosticyield.Diseasesthatarediagnosed
relativelyfrequentlyinPhaseIImayoftenbeoverlookedinPhaseI.Ifsuchdiseasescouldbeidentified,perhapsappropriatescreeninginstrumentscouldbeaddedtoPhaseI.
3.3.2.4.)CompareandcoordinatemethodsandclinicalresultsoftheCCEPandUCAP:
TheDVAusesaprotocolsimilartothatusedintheCCEPcalledtheUniformCaseAssessmentProtocol(UCAP).Themethods
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andclinicalresultsoftheCCEPandUCAPshouldbecomparedtocoordinateandimprovethetwoprograms.
3.3.3.)UseoftheCCEPResultsforPatientOutcome:
3.3.3.1.)Performtargetedpatientevaluations:
Onthebasisofmorethan10,000patientevaluationstodate,RMCphysicianscouldbegintoperformaseriesoftargetedpatientevaluations.ThemostcommondiseasesintheCCEPcouldbeidentified,andsuggestedapproachestopatienttreatmentcouldbedeveloped.ConsensusguidelinesforthetreatmentandcounselingofCCEPpatientswhohavethemostcommondisorderscouldbeusefulforprimarycarephysicians.
3.3.3.2.)CommunicatesuccessfultreatmentmethodsbetweenRMCs:
IfoneRMChashadalotofexperiencewithaparticulardiseasecategoryandsomemeasureofsuccessinitstreatment,theDoDcouldensurethatadescriptionoftheirsuccessfulmethodsiscommunicatedtotheotherMTFsandRMCsacrossthecountry.
3.3.3.3.)ReviewdisordersamongCCEPpatientswhohaveappliedfordisabilitypaymentsorformedicaldischargefromtheservice:
TheDoDcouldperformareviewofthetypesandseveritiesofthedisordersamongCCEPpatientswhohaveappliedfordisabilitypaymentsorformedicaldischargefromtheservice.Inaddition,thefinaldispositionofthesecasescouldbeevaluated,includingthepotentialrelationshipbetweenparticulardiseasesandPersianGulfservice.TheDoDcouldusetheresultsofthesedisabilitydeterminationstopredictwhichdiseasesarelikelytobeassociatedwiththemostimpairmentamongCCEPpatientsinthefuture.TheDoDcouldalsousetheseresultstodeveloprehabilitationandearlyinterventionmethodsforimpairedPersianGulfveterans,suchasthe
SpecializedCareCenters(SCC).Anotherreasontoanalyzethesedisabilityclaimswouldbetoinvestigatepossiblepreexistingriskfactorsforthedevelopmentoftheimpairment.Ifsuchriskfactorsareidentifiable,thentargetedpreventivemedicineinterventionscouldbeplannedforindividualsparticipatinginfutureoverseasdeployments.
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3.3.4.)SpecializedCareCenter(SCC):
3.3.4.1.)TheDoDhasmadeseriouseffortstodevelopanSCCprogramthathasambitiousgoals:
TheIOMcommitteeconcludesthattheDoDhasmadeseriouseffortstodevelopanSCCprogramwithambitiousgoalsforaselectgroupofseriouslyimpairedmilitarypersonnel.Thecommittee'sreviewshouldbeconsideredpreliminary,however,becauseitisbasedononevisitanditisstillearlyinthedevelopmentoftheprogram.
3.3.4.2.)Providemultidisciplinarytreatmentmodalities:
TheSCCcurrentlyperformsathoroughreevaluationofeachpatient'smedicalproblems.SCCphysiciansshouldconsiderlimitingthediagnosticrolethattheyplaytofocusingontheincomingpatientswhohavebeenverydifficulttodiagnoseattheRMClevel.Instead,theSCCshouldfocusonprovidingmultidisciplinarytreatmentmodalitiesthatarenotreadilyavailableattheRMClevel.
3.3.4.3.)Needforindividualizedfollow-upandtherapeuticregimens:
Theneedforindividualizedfollow-upiscrucialforthetypesofdifficultpatientswhoarelikelytobetreatedattheSCC.MedicalstaffattheSCCwillneedtoknowwhetheraparticulartherapeuticplanisfeasibleatthepatient'snearestMTFandwhetherlong-termfollow-upcarecanbeperformed.TheprimarycarephysicianattheMTFneedstoencouragecontinuouspatientcompliancewiththecarefullydesigned,individualizedtherapeuticregimens.
3.3.4.4.)Developobjectivemeasureoffunctionalstatusforfollow-upevaluation:
TheSCCphysiciansshoulddevelopasetofrelativelyobjectivemeasuresoffunctionalstatusforthefollow-upevaluation.Thesecouldinclude(1)appropriateutilizationofmedicalcare,(2)
appropriateuseofmedicationsorothermethodstocopewithsymptoms,(3)generallevelofactivitiesofdailyliving,(4)employmentstatus,and(5)statusofinterpersonalrelationships.
3.3.4.5.)EvaluatetheSCCprogramitself:
TheSCCprogramitselfneedsanevaluationcomponentafterseveralofitsgraduateshavereturnedfortheir6-monthreevaluations.Severalissueswillneedtobeevaluatedinlightofthe
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successesandbarriersthattheprogramhasexperienced,includingeligibilitycriteriaforpatients;rolesoftheSCCinadiagnosticreevaluationofpatients;successfulcontinuityofcareofpatients,withsharedresponsibilitybytheSCCandMTFs;andtheuniqueneedfortheSCC,beyondtheusualstandardofatertiarycaremedicalcenter.
3.3.4.6.)DoDhastakenaseriousapproachtothetreatmentandrehabilitationofthesepatientsintheSCC:
ThecommitteebelievesthattheDoDhastakenaseriousapproachtothetreatmentandrehabilitationoftheseimpairedpatientswhohavetreatable,chronicdiseases.
3.3.4.7.)InvestigatecostsandbenefitsoftheSCCprogram:
Becausethisprogramisverylabor-intensive,itisprobablyveryexpensiveonaper-patientbasis.Atthesametime,thepotentialbenefitsforeachpatientcouldbehigh,ifsuccessfulrehabilitationofserious,long-termimpairmentcanbeachieved.SubsequentevaluationsoftheSCCprogramshouldinvestigateitscostsandbenefits,ifpossible.
3.3.4.8.)IdentifythemosteffectiveelementsoftheSCCprogram:
IftheSCCprogramissuccessfulinimprovingthehealthandfunctionalstatusofitspatients,perhapstheelementsthataremosteffectiveinenablingthepatientstocopewiththeirsymptomscouldbeidentified.PerhapssomeoftheseelementscouldbedisseminatedandintegratedintoexistingMTFprogramsthatareclosetowhereCCEPpatientsliveandwork.
3.4.)ResearchRelevanttotheCCEP:
3.4.1.)EpidemiologicalResearchRelevanttotheCCEP:
3.4.1.1.)Utilizeon-goingepidemiologicalstudiesforrevisingor
improvingtheCCEP:
Theresultsofon-goingepidemiologicalstudiesmaybeusefulformakingrevisionsorimprovementsintheCCEPmedicalprotocolitself,forexample,torevisethestandardizedquestionnairesortoaddordeletetargetedlabtests.ThestudyresultsmayalsobeusefulinthecounselingandtreatmentofCCEPpatients.
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3.4.1.2.)AcknowledgetheseriouslimitationsoftheCCEPdataforepidemiologicalpurposes:
DatafromindividualsintheCCEParealsobeingusedinsomeoftheseepidemiologicalstudies.Inthesestudies,theseriouslimitationsoftheCCEPdataforepidemiologicalpurposesthatwerepreviouslyidentifiedmustbekeptinmind.
3.4.2.)ExposureAssessmentResearchRelevanttotheCCEP:
3.4.2.1.)InvestigateexperiencesofindividualsinUICswithhigherratesofCCEPparticipation:
TheIOMcommitteeencouragesDoDtoperformfurtherinvestigationsonthewarandpostwarexperiencesofindividualsintheUnitIdentificationCodes(UICs)withhigherratesofCCEPparticipation.
3.4.2.2.)Investigateexposuresrestrictedtoparticularlocationsorspecialoccupationalgroups:
ThecommitteeencouragestheDoDtoinvestigateexposuresthatwererestrictedtoparticularlocationsorspecialoccupationalgroups,suchastroopswhohaddirectcombatexposure.ThetypesofsymptomsanddiseasesinCCEPparticipantsinthesespecialgroupsandUICscouldbeanalyzedandcontrastedwiththesymptomsanddiagnosesofCCEPparticipantsinotherunits.
COMMITTEEONTHEDODPERSIANGULFSYNDROMECOMPREHENSIVECLINICALEVALUATIONPROGRAM
GerardBurrow*,Chair,Dean,YaleUniversitySchoolofMedicine,NewHaven,Connecticut
DanBlazer,DeanofMedicalEducationandProfessorofPsychiatry,DukeUniversityMedicalCenter,Durham,NorthCarolina
MargitBleecker,Director,CenterforOccupationalandEnvironmentalNeurology,Baltimore,Maryland
RalphHorwitz,Chairman,DepartmentofInternalMedicine,YaleUniversitySchoolofMedicine,NewHaven,Connecticut
*Member,InstituteofMedicine.
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HowardKipen,AssociateProfessorandDirector,OccupationalHealthDivision,RobertWoodJohnsonMedicalSchool,Piscataway,NewJersey
AdelMahmoud,*Chairman,DepartmentofMedicine,CaseWesternReserveUniversityandUniversityHospitalsofCleveland,Cleveland,Ohio
MichaelOsterholm,StateEpidemiologist,MinnesotaDepartmentofHealth,Minneapolis,Minnesota
RobertPynoos,ProfessorofPsychiatry,UniversityofCaliforniaatLosAngeles,LosAngeles,California
AnthonyScialli,AssociateProfessor,DepartmentofObstetricsandGynecology,GeorgetownUniversityMedicalCenter,Washington,D.C.
RosemarySokas,AssociateProfessorofMedicine,DivisionofOccupationalandEnvironmentalMedicine,GeorgeWashingtonUniversitySchoolofMedicine,Washington,D.C.
GuthrieTurner,ChiefMedicalConsultant,DivisionofDisabilityDeterminationServices,StateofWashington,Tummwater,Washington
MichaelWeisman,Professor,DivisionofRheumatology,UniversityofCaliforniaatSanDiegoMedicalCenter,SanDiego,California
Staff
MichaelA.Stoto,Director,DivisionofHealthPromotionandDiseasePrevention
KelleyA.Brix,StudyDirector
DeborahKatz,ResearchAssistant
AmyNoelO'Hara,ProjectAssistant
DonnaD.Thompson,DivisionAssistant
MonaBrinegar,FinancialAssociate
AppendixEWorkshopontheAdequacyoftheCCEPforEvaluatingIndividualsPotentiallyExposedtoNerveAgents:AgendaandSpeakersList
NATIONALACADEMYOFSCIENCESINSTITUTEOFMEDICINE
December3,1996FoundryBuildingFO-2004,Georgetown
AGENDA
10:00-10:15 Welcome/PurposeandConductoftheWorkshop
Dr.DanBlazer,Chair,CommitteeontheEvaluationoftheDoDComprehensiveClinicalEvaluationProgramforPersianGulfVeterans
10:15-12:00 WorkshopSessionIIssuesregardingtheCCEPDr.RaymondChung,Origins/BackgroundDr.CharlesEngel,MentalHealthDr.AndrewDutka,NeurologicConditionsDr.TimothyCooper,PainDr.AnthonyAmato,NeuromuscularSymptomsDr.KurtKroenke,DiagnosticApproach/GeneralizedSymptoms
12:00-1:00 Lunchinmeetingroom
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1:00-2:45 WorkshopSessionIIIssuesregardingorganophosphates,anticholinesterases,andnerveagentsDr.PeterSpencer,NeurotoxicologyoforganophosphatesDr.RobertMacPhail,Behavioraltoxicologyoforgano-phosphatesandpyridostigmineDr.RobertGum,Possiblehealtheffectsinhumansfromlow-levelexposuretonerveagentsDr.BhupendraP.Doctor,Endogenousdetoxificationofsarin
2:45-3:00 Break3:00-4:45 WorkshopSessionIIIIssuesregardingneurological
testingprotocolsNeurophysiologicaltestingDr.EvaFeldmanDr.DavidCornblathNeurobehavioralandneurocognitivetestingDr.KentAngerDr.RobertaWhite
4:45-5:00 Break5:00-6:30 WorkshopSessionIVModeratedDiscussion
Dr.DanBlazer,ModeratorDr.RichardJohnsonDr.ArthurAsburyDr.DavidJanowsky
6:30 Workshopadjourns
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SPEAKERS
AnthonyA.Amato,M.D.UniversityofTexasSanAntonioDepartmentofNeurologyandMedicine
Capt.AndrewJ.Dutka,M.D.NeurologyServiceNationalNavalMedicalCenterBethesda,MD
W.KentAnger,Ph.D.AssociateDirectorforOccupa-tionalResearchandHealthPromotionOregonHealthSciencesUniversityPortland
Maj.CharlesC.Engel,Jr.,M.D.Chief,GulfWarHealthCenterWalterReedArmyMedicalCenterWashington,DC
ArthurAsbury,M.D.VanMeterProfessorofNeurologyHospitaloftheUniversityofPennsylvaniaPhiladelphia
EvaFeldman,M.D.,Ph.D.AssociateProfessorDepartmentofNeurologyUniversityofMichiganAnnArbor
Col.RaymondChungGulfWarHealthCenterWalterReedArmyMedicalCenterWashington,DC
Lt.Col.RobertGum,M.D.Chief,ChemicalCasualtyCareOfficeU.S.ArmyMedicalResearchInstituteofChemicalDefenseAberdeenProvingGround,MD
Lt.Col.TimothyW.Cooper,M.D.InfectiousDiseaseService74thMedicalGroupHospitalWrightPattersonAFB,OH
DavidJanowsky,M.D.DepartmentofPsychiatryUniversityofNorthCarolinaNeurosciencesHospitalChapelHill
DavidCornblath,M.D.PathologyDepartment
RichardJohnson,M.D.Director,DepartmentofNeurology
JohnsHopkinsHospitalBaltimore,MD
JohnsHopkinsUniversitySchoolofMedicineBaltimore,MD
BhupendraDoctor,M.D.Director,DivisionofBiochemistryWalterReedInstituteofResearchWashington,DC
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Col.KurtKroenke,M.D.GeneralInternistUniformedServicesUniversityofHealthSciencesBethesda,MD
PeterS.Spencer,Ph.D.DirectorCenterforResearchonOccupa-tionalandEnvironmentalToxicologyOregonHealthSciencesUniversityPortland
RobertC.MacPhail,Ph.D.NeurotoxicologyDivisionEnvironmentalProtectionAgencyResearchTrianglePark,NC
RobertaWhite,Ph.D.EnvironmentalHazardsCenterDepartmentofVeteransAffairsMedicalCenterBoston
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AppendixFAdequacyoftheComprehensiveClinicalEvaluationProgram:NerveAgents*
RECOMMENDATIONS
ThechargetothecommitteewastodeterminewhethertheComprehensiveClinicalEvaluationProgramcouldadequatelydiagnoseandtreatpossiblehealthproblemsamongservicepersonnelwhomayhavebeenexposedtolowlevelsofnerveagents.Thecommitteereviewedextensiveclinicalandresearchresultsregardingtheeffectsofnerveagents.Noevidenceavailabletothecommitteeconclusivelyindicatedtheexistenceoflong-termhealtheffectsoflow-levelexposuretonerveagents.Becausefirmconclusionsabouttheseeffectsremainelusive,thecommitteereviewedinformationaboutthetypesofhealtheffectsthatmightexistasaresultofexposure.Leadingscientistspresentedinformationsuggestingthatthepossibleeffectsmightincludeneurologicalproblemssuchasperipheralsensoryneuropathiesandpsychiatricproblemssuchasalterationsinmood,cognition,orbehavior.
Recentreportssuggestingapossibletoxicsynergisticeffectfollowingexposuretomultipleagentsknowntoinfluencecholinesteraseactivitywillrequireextensiveresearchtodeterminetheirsignificance(HaleyandKurt,1997;Haleyetal.,1997a,b;Lottieetal.,1993).Theresultsoftheresearchtodate,however,didnotappeartoindicateanyadditionalpossiblehealtheffectsshouldbeconsideredbythecommitteeotherthanthosealreadyidentified.
*ThisappendixisexcerptedfromtheInstituteofMedicinereport,AdequacyoftheComprehensiveClinicalEvaluationProgram:NerveAgents,Washington,D.C.:NationalAcademyPress,1997.
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ThecommitteeconcludedthattheCCEPcontinuestoprovideanappropriatescreeningapproachtothediagnosisofdisease.MostCCEPpatientsreceiveadiagnosisand80%ofparticipantsreceivemorethanonediagnosis.AlthoughthetypesofprimarydiagnosescommonlyseenintheCCEPinvolveavarietyofconditions,65%ofallprimarydiagnosesfallintothreediagnosticgroups(1)psychologicalconditions;(2)musculoskeletaldiseases;and(3)symptoms,signs,ill-definedconditionsorafourthgroupdesignatedas''healthy."However,inviewofpotentialexposuretolowlevelsofnerveagents,certainrefinementsintheCCEPwouldincreaseitsvalue.Theserefinementsareviewedaspartofanaturalevolutionandimprovementprocessand,therefore,neednotbeappliedretrospectively.Thecommitteedoesencouragerapidimplementationinordertoprovidethebenefitsofanimprovedsystemtonewenrollees.
ThecommitteerecommendsimproveddocumentationofthescreeningusedduringPhaseIforpatientswithpsychologicalconditionssuchasdepressionandposttraumaticstressdisorder(PTSD).TheDoD(DoD,1996)reportedthatdepressionandPTSDaccountforasubstantialpercentageofthosereceivingadiagnosisofapsychologicalcondition.Inaddition,iftherearelongtermhealtheffectsofnerveagentexposure,itispossiblethattheseeffectscouldbemanifestedaschangesinmoodorbehavior.Thecommitteewillbeconductinganin-depthexaminationoftheadequacyoftheCCEPasitrelatestostressandpsychiatricdisordersatalatertime;however,becauseoftheincreasedimportanceofensuringthatallpossibilitiesarethoroughlychecked,betterdocumentationinthisareaisencouraged.Primaryphysicianscoulduseanyofanumberofself-reportscreeningscales,butconsistentuseofthesamescaleacrossfacilitieswouldensureconsistentresults.
Thecommitteerecommendsimproveddocumentationofneurological
screeningdoneduringbothPhaseIandPhaseIIoftheCCEP.Concernaboutnerveagentexposureaswellasthenumberofnonspecific,undiagnosedillnessesamongCCEPpatientsmakesdocumentationofneurologicalscreeningextremelyimportant.CCEPpatientsarereferredtoneuromuscularspecialistsiftheyhavecomplaintsofseveremuscleweakness,fatigue,ormyalgiaslastingforatleast6monthsthatsignificantlyinterferewithactivitiesofdailyliving.Thesepatientsareevaluatedbyboard-certifiedneurologistswhohavesubspecialtytraininginneuromusculardisease.Basedonthedescriptionofthetestsadministeredandexaminationsconducted,thecommitteefindsthattheCCEPissufficienttoensurethatnochronic,well-establishedneurologicalproblemisbeingoverlooked.Thedocumentationoftheuseofthesetestsandprocedures,however,couldandshouldbeimproved.Suchimprovementswouldengenderconfidencethatneurologicalexaminationsandtreatmentsacrossfacilitiesarecomparable.
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Giventheimportanceofthoroughneurologicalandpsychiatricscreening,thecommitteerecommendsthatPhaseIprimaryphysicianshavereadyaccesstoareferralneurologistandareferralpsychiatrist.Asmentionedearlier,patientsarereferredtoneuromuscularspecialistsiftheyhavecomplaintsofseveremuscleweakness,fatigue,ormyalgiaslastingforatleast6monthsthatsignificantlyinterferewithactivitiesofdailyliving.Appropriatepsychiatricreferralscouldincludethosewithchronicdepressionthatistreatment-resistant,anunexplained,persistentcomplaintofmemoryproblems,orsignificantimpairmentsecondarytobehavioraldifficulties,suchasnotbeingabletomaintainproductiveworkduetobehavioralabnormalities.WhilepatientsreferredforPhaseIIconsultationswithaneurologistorpsychiatristarecaredforadequately,itissometimesdifficultfortheprimaryphysiciantodeterminewhetherornotareferralisappropriate.Insuchinstances,thephysiciantendstorefermorefrequentlythannot.Itmaybethat,iftheprimarycarephysicianhadneurologicalandpsychiatricconsultationsreadilyavailable,referraldecisionscouldbemademoreeasilyandappropriately.
Thecommitteerecommendsthatphysicianstakemorecompletepatienthistories,particularlyregardingpersonalandfamilyhistories,theonsetofhealthproblems,andoccupationalandenvironmentalexposures.WhiletherecurrentlyisgraveconcernaboutexposuretonerveagentsduringdeploymentinthePersianGulf,otherfactorshaveanaffectonpsychologicalandneurologicaldisorders.Patientscanperformbelowexpectationsonneuropsychologicaltestsforanumberofreasons.Inclinicalassessments,therefore,itisimportanttoruleoutalternativecausesofimpairment.Inaddition,currentandpastexposurestooccupationalandenvironmentaltoxicantsareimportant.Detailedhistoriesareavaluabletoolinidentifyingtheetiologyofapatient'sproblems.
Thecommitteerecommendsthat,totheextentpossible,
predeploymentphysicalexaminationsgiventomembersofthearmedforcesshouldbestandardizedamongtheservices.Thelackofuniformbaselineinformationaboutservicemembersmakesdiagnosisandtreatmentofpostdeploymentproblemsmoredifficult.Totheextentthatadequatebaselineinformationisunavailable,physiciansmustrelyonself-reporting.Adequatepredeploymentphysicalexaminations,standardizedacrossservices,couldproveanimportanttoolforbothclinicalassessmentandstructuredresearch.
ThecommitteerecommendsthatDoDincreasetheuniformityofCCEPformsandreportingproceduresacrosssites.TheCCEPsystemwouldbenefitfromincreasedconsistencyandtheknowledgethateachserviceiscollectingandusingthesameinformation.Currently,eachbranchofserviceandeachfacilityusedifferentformstocompleteexaminations,tests,andreferrals.IncreasingtheconsistencyofsuchformsandprocedureswouldprovideamorereliablepictureofthecaregiventopatientsintheCCEP.Aswasstatedinthe
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1996reportontheHealthConsequencesofServiceDuringthePersianGulfWar,itisextremelyimportanttocreateauniform,continuous,andretrievablemedicalrecord.Inaddition,the1996reportstatedthattheinformationshouldbecollectedaccordingtostandardizedproceduresandmaintainedinacomputer-accessibleformat(IOM,1996b).Thecommitteeconcurswiththosefindings.
Foreachpatient,thephysicianshouldprovidewrittenevidencethatallorgansystemswereevaluated.TheCCEPprimarycarephysiciansexaminepatients,and,ifthereareproblemsrequiringadditionalexpertise,thepatientsarereferredtospecialists.ThisisstandardmedicalpracticeusedacrosstheUnitedStates.Itwouldbeappropriate,however,fortheCCEPprimarycarephysicianstodocumentthattheirevaluationscoveredallorgansystems.Thecommitteeisnotrecommendingtheuseofneworsophisticatedtestingmechanisms.Itisreinforcingtheimportanceofthecomponentsofthebasicmedicalexamination.Thisincreaseddocumentationcouldbecompletedbynotingtheorgansystemsevaluatedandwhethereachwasnormalorabnormal.Forthoselistedasabnormal,additionalinformationcouldbeprovided.
ThecommitteestronglyurgestheDoDtooffergroupeducationandcounselingtosoldiersandtheirfamiliesconcernedaboutexposuretotoxicagents.FollowingtherevelationbytheDoDofpossibleexposuretonerveagentsduetothedestructionofthemunitionsdumpatKhamisiyah,approximately20,000servicepersonnelreceivedaletterfromtheDoDstatingthattheirunitswereinthevicinityduringthedemolition.Eachrecipientwasencouragedtocontactan800numberifheorshewasexperiencinghealthproblemsbelievedtobearesultofserviceinthePersianGulf.Giventhisrevelation,theremaybeaheightenedsenseofinsecurityandconcernamongPersianGulfveteransandtheirfamiliesaboutpossibleexposuretonerveagents.Riskcommunicationisanimportantclinicalactivity.Familyand
groupcounselingcanaddressheightenedconcernsaboutexposureaswellasotherissues.SuchanapproachprovidesanappropriatepublichealthmechanismforimpartinginformationandaddressingconcernsandshouldbemadeavailabletoallPersianGulfveterans.
Althoughitisbeyondthescopeofthechargetothiscommitteetodeterminewhetherlow-levelexposuretonerveagentscauseslong-termhealtheffects,thecommitteebelievesstronglythatthisisanimportantresearchareathatoughttobepursued.Mostoftheliteratureregardinghealtheffectsofexposuretonerveagents(i.e.,sarinandcyclosarin)addressesexposureshighenoughtocauseclinicallyobservableeffects.Theseclinicaleffectsarewelldocumentedandincludemiosis,blurredvision,nausea,vomiting,musculartwitching,weakness,convulsions,anddeath.Littleknownresearchhasbeenconductedregardingthelong-termhealtheffectsoflowlevelsofexposuretothesenerveagents.Theapplicationoffindingsfromresearchon
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organophosphatepesticideexposuretotheareaofnerveagentexposurehaslimitations.However,eveninsuchpesticidestudies,long-termhealtheffectshavebeendocumentedonlyforacutelypoisonedindividuals-thatis,personswithimmediateclinicalsymptoms.
ThecommitteeemphasizesthattheCCEPisnotanappropriatevehicleforscientificallyassessingquestionsaboutlong-termhealtheffectsoflowlevelsofexposuretonerveagents.TheCCEPisaclinicaltreatmentprogram,notaresearchprotocol.Itisimportant,therefore,nottoattempttousethefindingsoftheCCEPtoanswerresearchquestions.Thosequestionsmustbeaddressedthroughrigorousscientificresearch.
ThecommitteenotesthattheCCEPcouldbeusefulinidentifyingpromisingdirectionsforseparateresearchstudies.Examinationsofthehealtheffects-ifany-ofvariouswartimeexposureshavebeenhamperedbypoorinformationaboutthelevelofexposureandaninabilitytoidentifytheindividualswhomayhavebeenexposed.Itisoftendifficulttoretrospectivelyestimateexposurelevels.However,informationaboutwhereindividualswereandwhentheyweretherecouldbecombinedwithdataregardingthepresenceofanexposuretodevelopsurrogatemeasures.Thesesurrogatemeasurescouldthenbelinkedtohealthinformationandusedtoexaminepotentialassociationsbetweenexposuresandhealtheffects.
AlthoughdatafromtheCCEPcannotbeusedtotestforassociations,itcanbecombinedwithotherinformationtohelpidentifyareasforfutureresearch.Forexample,theDoDidentifiedapproximately20,000servicepeoplebelongingtounitsthatwerewithina50-kilometerradiusofKhamisiyahatthetimeofthemunitionsdemolition.ExaminingthehealthrecordsofthesepeoplemayyieldinsightsintowhetherthosewhoparticipatedintheCCEP(orasimilar
programadministeredbytheVA)havedifferentillnessesorpatternsofillnessesthandoCCEPparticipantsoutsidethe50-kilometerradius.MoredetaileddiscriminationofproximitytoKhamisiyah(e.g.,within20kilometersorwithintheunitsdirectlyresponsibleforthemunitionsdestruction)mayprovideadditionalinformation.
Itisimportant,however,tounderstandthelimitationsofsuchcomparisons.TheresultscannotbetakenasresearchfindingsandgeneralizedtotheentirepopulationofthosedeployedtothePersianGulf.Active-dutymilitarypersonnelparticipatingintheDoDhealthregistrymaybeeithermoreorlesshealthythanothernonparticipantsonactiveduty.CCEPcomparisonsonthisself-selectedgroupofpatientsshouldnotbeusedtodrawconclusionsabouttheentirepopulationofPersianGulfveterans.
Morebroadly,thecommitteenotesthatinformationthathelpstoidentifywhereindividualswereinthePersianGulfandwhentheyweretherewillalsofacilitateresearchintopotentialservice-relatedhealthproblems.Thisinformationiscurrentlyneededtoaddressthequestionofwhomighthavebeen
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exposedtonerveagentsandwhocouldbepartofthe(unexposed)comparisongroupsnecessaryforepidemiologicalstudies.Suchinformationcouldalsobeusedtomorequicklyandeasilyidentifytheexposedandunexposedgroupsthatwouldberequiredtoassessanyfutureconcernsregardingthisorotherexposures.
Generatinggeographicalandtemporalinformationforall700,000peoplewhoservedinthePersianGulfwouldbeanimmenseendeavor.Itwouldnotbeprudenttoundertakesuchataskwithoutfirstthoroughlyunderstandingtheeffortrequiredtocompleteit.Itwould,however,beappropriatetotakestepsnowtoidentifyandpreserverecordsthatcouldassistinthegenerationofsuchadatabaseinthefuture.Records-basedinformationisintrinsicallysuperiortopersonalrecollections,especiallyseveralyearsafterthefact.
COMMITTEEONTHEEVALUATIONOFTHEDoDCOMPREHENSIVECLINICALEVALUATIONPROGRAM
DanG.Blazer,*Chair,DeanofMedicalEducationandProfessorofPsychiatry,DukeUniversityMedicalCenter,Durham,NorthCarolina
MargitL.Bleecker,DirectoroftheCenterforOccupationalandEnvironmentalNeurology,Baltimore,Maryland
EvelynJ.Bromet,Professor,DepartmentofPsychiatry,StateUniversityofNewYorkatStonyBrook,StonyBrook,NewYork
GerardBurrow,*Dean,YaleUniversitySchoolofMedicine,NewHaven,Connecticut
HowardKipen,AssociateProfessorandDirector,OccupationalHealthDivision,RobertWoodJohnsonMedicalSchool,Piscataway,NewJersey
AdelA.Mahmoud,*Chairman,DepartmentofMedicine,Case
WesternReserveUniversityandUniversityHospitalsofCleveland,Cleveland,Ohio
RobertS.Pynoos,AssociateProfessorofPsychiatryandDeanoftheTraumaPsychiatryService,UniversityofCaliforniaatLosAngeles,LosAngeles,California
GuthrieL.Turner,ChiefMedicalConsultant,OfficeofDisabilityDeterminationServices,StateofWashington,Tummwater,Washington
MichaelWeisman,Professor,DivisionofRheumatology,UniversityofCaliforniaatSanDiegoMedicalCenter,SanDiego,California
Staff
LylaM.Hernandez,StudyDirector
SanjayS.Baliga,ResearchAssociate
*Member,InstituteofMedicine.
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DavidA.Butler,SeniorProgramOfficer
DonnaM.Livingston,ProjectAssistant
JamesA.Bowers,ProjectAssistant
KathleenR.Stratton,Director,DivisionofHealthPromotionandDiseasePrevention
ConstanceM.Pechura,Director,DivisionofNeuroscienceandBehavioralHealth
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AppendixGWorkshopAgendasandSpeakersLists
WORKSHOPONDIFFICULT-TO-DIAGNOSEANDILL-DEFINEDCONDITIONS
GreenBuilding,Washington,D.C.March3,1997
AGENDA
8:30-8:45 WelcomeandIntroductionDanG.Blazer,M.D.,Chair,CommitteeontheAssessmentoftheDoDComprehensiveClinicalEvaluationProgram
8:45-10:00 ChronicFatigueSyndromeDescription/DiagnosisandTreatmentDescription/DiagnosisDedraS.Buchwald,M.D.TreatmentNelsonGantz,M.D.Q&A
10:00-10:15
BREAK
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10:15-11:30FibromyalgiaDefinition/DiagnosisFrederickWolfe,M.D.TreatmentRobertSimms,M.D.Q&A
11:30-12:30MultipleChemicalSensitivityDescription,Diagnosis,andTreatmentHowardKipen,M.D.,M.P.H.Q&A
12:30-1:30 LunchinMeetingRoom1:30-2:00 DifficulttoDiagnoseandIll-DefinedConditionsA
DiscussionoftheIssuesDanielJ.Clauw,M.D.
2:00-2:30 WhataretheCriteriaforaGoodScreeningInstrumentPenelopeM.Keyl,Ph.D.
2:30-3:30 DepartmentofDefensePresentationSigns,symptoms,andill-definedconditionsMajCharlesMagruderFibromyalgiaandChronicFatigueSyndromeintheCCEPLtColTimCooperInterpretationofCCEPData:DiagnosticandTreatmentApproachestoDateCOLKurtKroenke
3:30 ADJOURNWORKSHOP
SPEAKERS
DedraStefanieBuchwald,M.D.UniversityofWashingtonSeattle,WA
LtColTimCooper74thMedicalGroupHospitalWright-PattersonAFB,OH
DanielJ.Clauw,M.D.GeorgetownUniversity
NelsonM.Gantz,M.D.,F.A.A.C.P.
GeorgetownUniversityWashington,DC
F.A.A.C.P.PolyclinicHospitalHarrisburg,PA
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PenelopeM.Keyl,Ph.D.JohnsHopkinsUniversityBaltimore,MD
MajEdwinC.Matthews59thMedicalWingHospitalLacklandAFB,TX
HowardKipen,M.D.,M.P.H.EnvironmentalandOccupationalHealthSciencesInstitutePiscataway,NJ
RobertSimms,M.D.BostonUniversitySchoolofMedicineBoston,MA
COLKurtKroenkeUniformedServicesUniversityofHealthSciencesBethesda,MD
FrederickWolfe,M.D.TheArthritisCenterWichita,KS
MAJCharlieMagruderDeploymentSurveillanceTeamFallsChurch,VA
WORKSHOPONSTRESSANDPSYCHIATRICDISORDERS
ArnoldandMabelBeckmanCenterIrvine,CAMay22,1997
AGENDA
8:00 WelcomeandIntroductionDanG.Blazer,M.D.,ChairCommitteeontheEvaluationoftheCCEP
8:15-10:15StressorsGeneralStressorsCarolAneshensel,Ph.D.MilitaryStress(includingcombatandGulfWarspecific)CharlesEngel,M.D.
StressanditsEffectsontheEndocrineandtheImmuneSystemsFirdausDhabhar,Ph.D.Discussion
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10:15-10:30BREAK
10:30-11:00 SubstanceAbuseWalterLing,M.D.
11:00-12:00 DepartmentofDefenseDescriptionofDiagnosticProcess/ProtocolDataPresentationMichaelRoy,M.D.
12:00-1:00 LUNCH1:00-1:30 DepartmentofDefense
SpecializedCareCenterCharlesEngel,M.D.
1:30-3:30 PosttraumaticStressDisorder(PTSD)DavidFoy,Ph.D.DiagnosingDepressioninaPrimaryCareSettingJohnD.Wynn,M.D.SubthresholdDepressions:Clinical,Familial,andSleepEEGValidationHagopAkiskal,M.D.Discussion
3:30 WORKSHOPENDS
SPEAKERS
HagopAkiskal,M.D.UniversityofCaliforniaSanDiego,CA
MAJCharlesEngel,M.D.,MCWalterReedArmyMedicalCenterWashington,DC
CarolAneshensel,Ph.D.UniversityofCaliforniaLosAngeles,CA
DavidFoy,Ph.D.PepperdineUniversityMalibu,CA
FirdausDhabhar,Ph.D.TheRockefellerUniversityNewYork,NY
WalterLing,M.D.UniversityofCaliforniaLosAngeles,CA
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MAJMichaelRoy,M.D.,MCWalterReedArmyMedicalCenterWashington,DC
JohnD.Wynn,M.D.UniversityofWashingtonSeattle,WA
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AppendixHOutlineoftheCCEPMedicalProtocol
FORMREQUIREMENTS
AttheMTFlevel,theCCEPrecordshouldincludeallCCEPformsandrelevantmedicaldatatotheprogram.
BlankformsincludedwiththisguidesupersedepreviouseditionsoftheseformsandareintendedtobeusedwiththenewCCEP.
Allindividualformswillbecompleteandlegible.
FormsforwardedtoNMIMCandmaintainedintheparticipantrecordshallbeinthefollowingorder:
PhaseIcompleted:
MTFPhaseIDiagnosisFormPatientQuestionnaireProvider-AdministeredSymptomQuestionnaireInformationReleaseFormDeclination/CompletionForm
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PhaseIIcompleted:
RMCPhaseIIDiagnosisFormDeclination/CompletionForm
MEDICALPROTOCOLS
TheCCEPisbaseduponathoroughclinicalevaluationwhichemphasizescomprehensiveandcontinuousprimarycare.ThelocalMTFprimarycareprovidermaintainsresponsibilityforpatientevaluationandcarethroughouttheCCEPprocess.
MedicalTreatmentFacility(PhaseI)
PhaseIwillconsistofacomprehensivehistoryandmedicalevaluationwithcompletionofPhaseIquestionnairesandrelatedforms.Theexamination,bothincontentandquality,shouldparallelaninpatientadmissionwork-up.ThePhaseIexaminationwillincludeacompletemedicalhistoryincluding:family,occupation,social(includingtobacco,alcohol,anddruguse),exposuretopossibletoxicagents,psychosocialconditionandreviewofsymptoms.TheproviderwillspecificallyinquireaboutthesymptomslistedontheCCEPProvider-AdministeredPatientQuestionnaire.Acomprehensivemedicalevaluation,withfocusedattentiontothepatients'symptomsandhealthconcerns,shouldbeconducted.
Individualswho,aftercompletingMTFPhaseIevaluations,donothaveaclearlydefineddiagnosiswhichexplainstheirsymptomsshouldbereviewedbytheCCEP-designatedphysicianforfurtherevaluationandconsultationsneededand/orforreferraltotheRMC.
PhaseIIlevelevaluationsareperformedonlyaftercompleteclinicallyindicatedevaluations(includingappropriatespecialtyconsultations)areconductedattheMTFandtheRMC.
PhaseILaboratoryTests
CBCU/ASMA-12
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RegionalMedicalCenter(PhaseII)
PhaseIIevaluationsconsistofthefollowinglaboratorytests,consultations,andasnecessary,symptom-specificexaminations.ElementsofthePhaseIIevaluationmaybeaccomplishedbythelocalMTFasneededinthecomprehensiveevaluationofthePhaseIpatientinordertoobtainadefinitivediagnosis.
PhaseIILaboratoryTests
CBCSedimentationrate(ESR)C-ReactiveproteinRheumatoidfactor B12andfolateANA ThyroidfunctiontestsLiverfunctionCPKUrinalysisTBskintest(PPD)withcontrolsChestX-ray
HepatitisserologyHIVtestingVDRLB12andfolateThyroidfunctiontests
PhaseIIConsults
(ifnotaccomplishedatMTFlevel)Dental:Dentalonlyifparticipant'sannualscreeningnotdoneInfectiousdiseasePsychiatry:Withphysician-administeredinstruments:StructuredClinicalInterviewforDSMIII-R(SCID)(deletemodulesformaniaandpsychosis)Clinician-AdministeredPTSDScale(CAPS)
NeuropsychologicalTesting:Onlyasindicatedbypsychiatryconsult
SYMPTOM-SPECIFICEXAMINATIONS
TheRMCCCEPphysicianensuresthatPhaseIIpatientswiththefollowingundiagnosedsymptomsreceivethetestsandconsultationslistedbelow.
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DiarrheaGIconsultStoolforOandPStoolleukocytesStoolcultureStoolcultureStoolvolumeColonscopywithbiopsiesEGDwithbiopsiesandaspiration
MuscleAches/NumbnessEMG/NCV
ChronicFatigue
PolysomnographyandMSLT
ChronicCough/SOBPulmonaryconsultPulmonaryfunctionTestswithexerciseandABGMethacholinechallengeIfPFTsarenormal,considerbroncho-scopywithbiopsy/lavage
AbdominalGIconsultEGDwithbiopsy/aspirationColonscopywithbiopsyAbdominalultrasoundUGIserieswithsmallbowelFTAbdominalCTscan
MemoryLoss(Onlyifverifiedbypsychevaluation)MRI-headLumbarpunctureNeuroconsultNeuropsychtesting
ChestPain/PalpitationsECGExercisestresstestHoltermonitor
HeadacheMRI-headLP(glucoseprotein,cellcount,VDRL,oligo-clonalmyelin,basicprotein,pressure)Neuroconsult
Vertigo/TinnitusAudiogramENGBAER
SkinRashDermatologyconsultConsiderbiopsy
ReproductiveConcernsUrologyconsultGYNconsult
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AppendixIScreeningInstrumentsforSubstanceAbuse
CAGE
1.Haveyoutriedtocutdownonyourdrinkingoruse?
2. Doyougetannoyedbyothers'commentsaboutyourdrinkingoruse?3. Doyoueverfeelguiltyaboutyourdrinkingoruse?4. Doyouevertakeaneyeopenerinthemorningtogetgoing?
BriefMAST
1.Doyoufeelyouareanormaldrinker?
2.Dofriendsorrelativesthinkyouareanormaldrinker?3.HaveyoueverattendedameetingofAlcoholicsAnonymous(AA)?4.Haveyoueverlostfriendsorgirlfriends/boyfriendsbecauseofdrinking?
5.Haveyoueverneglectedyourobligations,yourfamily,orworkfor2ormoredaysinarowbecauseyouweredrinking?
6.Haveyoueverhaddeliriumtremens(DTs),severeshaking,orseenthingsthatweren'tthereafterheavydrinking?
7.Haveyouevergonetoanyoneforhelpaboutyourdrinking?8.Haveyoueverbeeninahospitalbecauseofdrinking?9.Haveyoueverbeenarrestedfordrunkdrivingordrivingafterdrinking?(Pokotnyetal.,1972)
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T-ACE
TTOLERANCE:Howmanydrinksdoesittaketomakeyoufeelhigh?
AHavepeopleANNOYEDyoubycriticizingyourdrinking?CHaveyoueverfeltyououghttoCUTdownonyourdrinking?EEYEOPENER:Haveyoueverhadadrinkfirstthinginthemorning?
Twoormorepositiveresponsesindicatethatthewomanislikelytohaveanalcoholproblem(Sokoletal.,1989).
TWEAK
T TOLERANCE:Howmanydrinkscanyouhold?
W HaveclosefriendsorrelativesWORRIEDorcomplainedaboutyourdrinkinginthepastyear?
E EYEOPENER:Doyousometimestakeadrinkinthemorningwhenyoufirstgetup?
A AMNESIA:Hasafriendorfamilymemberevertoldyouaboutthingsyousaidordidwhileyouweredrinkingthatyoucouldnotremember?
K(C)
DoyousometimesfeeltheneedtoCUTdownonyourdrinking?
A7-pointscaleisusedtoscorethetest.Thetolerancequestionscores2pointsifthewomanreportsshecanholdmorethanfivedrinkswithoutfallingasleeporpassingout.ApositiveresponsetotheWORRIEDquestionscores2points,andapositiveresponsetothelastthreequestionsscores1pointeach.Atotalscoreof2ormorepointsindicatesthatthewomanislikelytohaveanalcoholproblem(Russeletal.,1993).
AUDIT
1.Howoftendoyouhaveadrinkcontainingalcohol?
1.Howoftendoyouhaveadrinkcontainingalcohol?
2.Howmanydrinkscontainingalcoholdoyouhaveonatypicaldaywhenyouaredrinking?