epilepsy care in the world 2005

96

Upload: lizethreyes

Post on 29-Sep-2015

9 views

Category:

Documents


2 download

DESCRIPTION

Atlas

TRANSCRIPT

  • 0ROGRAMMEFOR.EUROLOGICAL$ISEASESAND.EUROSCIENCE$EPARTMENTOF-ENTAL(EALTHAND3UBSTANCE!BUSE

    7ORLD(EALTH/RGANIZATION'ENEVA

    'LOBAL#AMPAIGN!GAINST%PILEPSY

  • 7(/,IBRARY#ATALOGUINGIN0UBLICATION$ATA

    7ORLD(EALTH/RGANIZATION

    !TLAS%PILEPSY#AREINTHE7ORLD

    %PILEPSYnEPIDEMIOLOGY%PILEPSYnTHERAPY(EALTHCARESURVEYS-ENTALHEALTHSERVICESnSTATISTICS!TLASES)4ITLE))4ITLE!TLASOFEPILEPSYCAREINTHEWORLD

    )3". .,CLASSIlCATION7,

    7ORLD(EALTH/RGANIZATION

    !LLRIGHTSRESERVED0UBLICATIONSOFTHE7ORLD(EALTH/RGANIZATIONCANBEOBTAINEDFROM7(/0RESS7ORLD(EALTH/RGANIZATION!VENUE!PPIA'ENEVA3WITZERLANDTELFAXEMAILBOOKORDERS WHOINT2EQUESTSFORPERMISSIONTOREPRODUCEORTRANSLATE7(/PUBLICATIONSnWHETHERFORSALEORFORNONCOMMERCIALDISTRIBUTIONnSHOULDBEADDRESSEDTO7(/0RESSATTHEABOVEADDRESSFAXEMAILPERMISSIONS WHOINT

    4HEDESIGNATIONSEMPLOYEDANDTHEPRESENTATIONOFTHEMATERIALINTHISPUBLICATIONDONOTIMPLYTHEEXPRESSIONOFANYOPINIONWHATSOEVERONTHEPARTOFTHE7ORLD(EALTH/RGANIZATIONCONCERNINGTHELEGALSTATUSOFANYCOUNTRYTERRITORYCITYORAREAOROFITSAUTHORITIESORCONCERNINGTHEDELIMITATIONOFITSFRONTIERSORBOUNDARIES$OTTEDLINESONMAPSREPRESENTAPPROXIMATEBORDERLINESFORWHICHTHEREMAYNOTYETBEFULLAGREEMENT

    4HEMENTIONOFSPECIlCCOMPANIESOROFCERTAINMANUFACTURERSPRODUCTSDOESNOTIMPLYTHATTHEYAREENDORSEDORRECOMMENDEDBYTHE7ORLD(EALTH/RGANIZATIONINPREFERENCETOOTHERSOFASIMILARNATURETHATARENOTMENTIONED%RRORSANDOMISSIONSEXCEPTEDTHENAMESOFPROPRIETARYPRODUCTSAREDISTINGUISHEDBYINITIALCAPITALLETTERS

    !LLREASONABLEPRECAUTIONSHAVEBEENTAKENBYTHE7ORLD(EALTH/RGANIZATIONTOVERIFYTHEINFORMATIONCONTAINEDINTHISPUBLICATION(OWEVERTHEPUBLISHEDMATERIALISBEINGDISTRIBUTEDWITHOUTWARRANTYOFANYKINDEITHEREXPRESSORIMPLIED4HERESPONSIBILITYFORTHEINTERPRETATIONANDUSEOFTHEMATERIALLIESWITHTHEREADER)NNOEVENTSHALLTHE7ORLD(EALTH/RGANIZATIONBELIABLEFORDAMAGESARISINGFROMITSUSE

    0RINTEDIN$ESIGNEDBY4USHITA'RAPHIC6ISION3RL#(4HNEX

    &ORFURTHERDETAILSONTHISPROJECTORTOSUBMITUPDATEDINFORMATIONPLEASECONTACT

    $R,0RILIPKO0ROGRAMME,EADER.EUROLOGICAL$ISEASESAND.EUROSCIENCE$EPARTMENTOF-ENTAL(EALTHAND3UBSTANCE!BUSE7ORLD(EALTH/RGANIZATION!VENUE!PPIA#('ENEVA3WITZERLAND4EL&AXEMAILPRILIPKOL WHOINT

  • &/2%7/2$

    %PILEPSYISONEOFTHEMOSTCOMMONSERIOUSDISORDERSOFTHEBRAINAFFECTINGABOUTMILLIONPEOPLEWORLDWIDE%PILEPSYACCOUNTSFOROFTHEGLOBALBURDENOFDISEASEOFTHEBURDENOFEPILEPSYISINTHEDEVELOPINGWORLDWHEREINSOMEAREASnOFPEOPLEWITHEPILEPSYRECEIVENOTREATMENTATALL)TISIMPERATIVETORECOGNIZETHATEPILEPSYCONSISTSOFMORETHANSEIZURESFORTHEAFFECTEDINDIVIDUALANDIMMEDIATEEFFECTSONHISORHERFAMILY%PILEPSYLEADSTOMULTIPLEINTERACTINGMEDICALPSYCHOLOGICALECONOMICANDSOCIALREPERCUSSIONSALLOFWHICHNEEDTOBECONSIDEREDINORDERTOUNDERSTANDFULLYTHEIMPACTOFTHISCONDITION&EARMISUNDERSTANDINGANDTHERESULTINGSOCIALSTIGMAANDDISCRIMINATIONSURROUNDINGEPILEPSYOFTENFORCEPEOPLEWITHTHISDISORDERhINTOTHESHADOWSv

    4HE7ORLD(EALTH/RGANIZATION7(/ISRESPONSIBLEFORPROVIDINGTECHNICALINFORMATIONANDADVICETOITS-EMBER3TATESTOHELPTHEMTOIMPROVETHEHEALTHOFTHEIRCITIZENS4HISTASKISFACILITATEDBYCOLLABORATIONWITHVARIOUSSCIENTIlCANDPROFESSIONALGROUPSTHATHAVESIMILARGOALS4OBRINGEPILEPSYhOUTOFTHESHADOWSvA'LOBAL#AMPAIGN!GAINST%PILEPSYWASLAUNCHEDINhTOIMPROVEACCEPTABILITYTREATMENTSERVICESANDPREVENTIONOFEPILEPSYWORLDWIDEv4HE#AMPAIGNISCONDUCTEDBY7(/INPARTNERSHIPWITHTHE)NTERNATIONAL,EAGUE!GAINST%PILEPSY),!%ANDTHE)NTERNATIONAL"UREAUFOR%PILEPSY)"%4HEAIMOFTHE#AMPAIGNISPRINCIPALLYTOREDUCETHETREATMENTGAPBYPROVIDINGBETTERINFORMATIONABOUTEPILEPSYANDITSCONSEQUENCESANDTOASSISTGOVERNMENTSANDTHOSECONCERNEDWITHEPILEPSYTOREDUCETHEBURDENOFTHEDISORDER4OGATHERINFORMATIONABOUTTHERESOURCESAVAILABLEFOREPILEPSYCARE

    INCOUNTRIESTHE!TLAS%PILEPSY#AREINTHE7ORLDWASINITIATED4HIS!TLASREPRESENTSAUNIQUECOLLABORATIVEEFFORTBETWEEN7(/ANDTHETWOLEADINGNONGOVERNMENTALORGANIZATIONSWORKINGINTHElELDOFEPILEPSY

    4HERESULTSOBTAINEDFROMTHESTUDYOFCOUNTRYRESOURCESFOREPILEPSYCONlRMTHATTHEAVAILABLERESOURCESFOREPILEPSYCAREINTHEWORLDAREINSUFlCIENTWHENSETAGAINSTTHELARGENUMBERSOFPEOPLENEEDINGSUCHCAREANDTHEKNOWNSUBSTANTIALBURDENASSOCIATEDWITHTHISDISORDER)NADDITIONTHEREARELARGEINEQUITIESACROSSREGIONSANDINCOMEGROUPSOFCOUNTRIESWITHLOWINCOMECOUNTRIESHAVINGEXTREMELYMEAGRERESOURCES3INCETHEPREVALENCEOFEPILEPSYISMUCHHIGHERANDRESOURCESAREMUCHSCARCERINLOWINCOMECOUNTRIESTHEDATAREINFORCETHENEEDFORURGENTSUBSTANTIALANDSYSTEMATICACTIONTOENHANCERESOURCESFOREPILEPSYCAREINTHESECOUNTRIES

    )TISHOPEDTHATTHEAVAILABILITYOFESSENTIALINFORMATIONWILLLEADTOGREATERAWARENESSAMONGPOLICYMAKERSOFTHEGAPSINRESOURCESFOREPILEPSYCARE4HEINFORMATIONISLIKELYTOASSISTHEALTHPLANNERSANDPOLICYMAKERSTOIDENTIFYAREASTHATNEEDURGENTATTENTIONANDTOPLANTHEUPGRADINGOFRESOURCESINTHOSEAREAS4HEDATAWILLALSOSERVEASABASELINEFORMONITORINGTHEIMPROVEMENTINAVAILABILITYOFRESOURCESFOREPILEPSYCARE7EHOPETHATPERSONNELINVOLVEDINCARINGFORPEOPLEWITHEPILEPSYINCLUDINGHEALTHPROFESSIONALSANDNONGOVERNMENTALORGANIZATIONSWILLUSETHE!TLASDATAINTHEIREFFORTSTOENSUREMOREANDBETTERRESOURCESFOREPILEPSYCARE

    $R"ENEDETTO3ARACENO$IRECTOR$EPARTMENTOF-ENTAL(EALTHAND3UBSTANCE!BUSE7ORLD(EALTH/RGANIZATION

    0ROFESSOR'IULIANO!VANZINI0RESIDENT)NTERNATIONAL,EAGUE!GAINST%PILEPSY

    -R0HILIP,EE0RESIDENT)NTERNATIONAL"UREAUFOR%PILEPSY

  • !CKNOWLEDGEMENTS

    0REFACE

    %XECUTIVESUMMARY

    )NTRODUCTION

    -ETHODOLOGY

    %PILEPSYTHEDISORDER

    -ILESTONESINTHEHISTORYOFEPILEPSY

    .UMBEROFPEOPLEWITHEPILEPSY

    %PIDEMIOLOGY

    !ETIOLOGYOFEPILEPSYnREPORTEDFREQUENCY

    !ETIOLOGYANDRISKFACTORS

    %PILEPSYTHESERVICES

    $IAGNOSTICSERVICES

    0RIMARYCARE

    0ROVISIONOFCARE

    )NPATIENTCARE

    %PILEPSYSPECIALISTSERVICES

    !NTIEPILEPTICDRUGS

    4HETREATMENTGAP

    3UBSPECIALIZEDSERVICES

    %PILEPSYSURGERY

    #/.4%.43

  • %PILEPSYTHECAREPROVIDERS

    -EDICALPROFESSIONALS

    0ROFESSIONALSALLIEDTOMEDICINE

    4RAININGINEPILEPTOLOGY

    %DUCATIONINEPILEPTOLOGY

    0ROFESSIONALASSOCIATIONS

    ,AYASSOCIATIONS

    2OLEOF),!%INFOSTERINGEPILEPSYCARE

    2OLEOF)"%INPROVIDINGEPILEPSYCARE

    %PILEPSYTHEPUBLICHEALTHASPECTS

    "UDGETANDlNANCING

    $ISABILITYBENElTS

    %PILEPSYANDRIGHTS

    2EPORTINGANDDATACOLLECTION

    0ROBLEMSENCOUNTERED

    3TIGMAANDSOCIALISSUES

    4HEATTRIBUTABLEANDADVERTABLEBURDENOFEPILEPSY

    'LOBAL#AMPAIGN!GAINST%PILEPSY

    'LOSSARYOFTERMS

    2EFERENCES

    ,ISTOF2ESPONDENTS

    #/.4%.43

  • !#+./7,%$'%-%.43

    4HE!TLAS%PILEPSY#AREINTHE7ORLDISONEOFTHEMOSTIMPORTANTPROJECTSWITHINTHEFRAMEWORKOFTHE),!%)"%7(/'LOBAL#AMPAIGN!GAINST%PILEPSY'#!%h/UTOFTHE3HADOWSvREPRESENTINGAMAJORCOLLABORATIVEEFFORTINVOLVING7(/HEADQUARTERSREGIONALANDCOUNTRYOFlCESAND),!%AND)"%HEADQUARTERSANDTHEIRMEMBERS

    4HEWORKWASSUPERVISEDANDCOORDINATEDBY$R,EONID0RILIPKOAND$R3HEKHAR3AXENAAT7(/HEADQUARTERSAND-RS(ANNEKEDE"OER#O#HAIR'#!%3ECRETARIAT$R"ENEDETTO3ARACENOPROVIDEDVISIONANDGUIDANCETOTHEPROJECTAND$R'IULIANO!VANZINIAND-R0HILIP,EEPROVIDEDTHEIRCONTINUOUSSUPPORTTOTHE#AMPAIGN$R4ARUN$UAWASRESPONSIBLEFORCOMPLETIONOFTHEDATACOLLECTIONDATAANALYSESANDOVERALLPROJECTMANAGEMENTANDFORMOSTOFTHEWRITINGOFTHISREPORT$R(ARRY-EINARDIAND$R'US"AKERPROVIDEDTECHNICALGUIDANCEANDSUPERVISION$R*EROME%NGEL*R$R!LEKSANDAR*ANCA-R0HILIP,EEAND$R(ARRY-EINARDIWEREINVOLVEDINTHEDEVELOPMENTOFTHESURVEYDESIGNANDQUESTIONNAIRE-S+ATHY&ONTANILLAWASINVOLVEDINTHEDATAMANAGEMENT

    #OLLABORATORSFROM7(/REGIONALOFlCESINCLUDE$R#USTODIA-ANDLHATEAND$R4HERSE!GOSSOU!FRICAN2EGIONAL/FlCE$R#LAUDIO-IRANDAAND$R*OSE-IGUEL#ALDASDE!LMEIDA2EGIONAL/FlCEFORTHE!MERICAS$R6IJAY#HANDRA3OUTH%AST!SIA2EGIONAL/FlCE$R7OLFGANG2UTZAND$R-ATTHIJS-UIJEN%UROPEAN2EGIONAL/FlCE$R!HMED-OHITAND$R23RINIVASA-URTHY%ASTERN-EDITERRANEAN2EGIONAL/FlCEAND$R(ELEN(ERMANNAND$R8IANGDONG7ANG7ESTERN0ACIlC2EGIONAL/FlCEALLOFWHOMMADEVALUABLECONTRIBUTIONSDURINGTHEDEVELOPMENTOFTHEPROJECTTHEIDENTIlCATIONOFKEYPERSONSINTHEAREAOFEPILEPSYIN-EMBER3TATESANDTHEREVIEWOFTHERESULTS

    4HEINFORMATIONFROMVARIOUSCOUNTRIESAREASORTERRITORIESWASPROVIDEDBYKEYPERSONSWORKINGINTHElELDOFEPILEPSYIDENTIlEDBY),!%)"%7(/REGIONALOFlCESANDTHEOFlCESOF7(/2EPRESENTATIVES+EYCOLLABORATORSWHOHELPEDINTHEIDENTIlCATIONOFKEYPERSONSINTHEAREAOFEPILEPSYINSOMEOFTHECOUNTRIESINCLUDE$R#ARLOS!CEVEDO$R!MADOU'ALLO$IOP$R0ETER(ALASZ$R3HI#HUO,IAND$R3USAN3PENCER4HESURVEYRESPONDENTS

    HANDLEDTHEMANYREQUESTSFORCLARIlCATIONARISINGFROMTHEDATA!LISTOFTHEIRNAMESISINCLUDEDATTHEENDOFTHE!TLAS

    6ARIOUSSPECIALISTSCONTRIBUTEDBRIEFREVIEWSOFSELECTEDAREASINRELATIONTOEPILEPSYASFOLLOWS$R%DWARD(2EYNOLDSMILESTONESINTHEHISTORYOFEPILEPSY$R.ADIR%"HARUCHAEPIDEMIOLOGY$R*OSEMIR73ANDERAETIOLOGYANDRISKFACTORS$R0ATRICK+WANAND$R-ARTIN*"RODIEPROVISIONOFCARE$R!MADOU'ALLO$IOPTHETREATMENTGAP$R*EROME%NGEL*REPILEPSYSURGERY$R0ETER7OLFEDUCATIONINEPILEPTOLOGY$R'IULIANO!VANZINIROLEOF),%!INFOSTERINGEPILEPSYCARE-R0HILIP,EEROLEOF)"%INPROVIDINGEPILEPSYCARE-RS+ATHRYN0AHLAND-RS(ANNEKEDE"OEREPILEPSYANDRIGHTS-S$EE3NAPE$R!NN*ACOBYAND$R'US!"AKERSTIGMAANDSOCIALISSUES$R$AN#HISHOLMTHEATTRIBUTABLEANDAVERTABLEBURDENOFEPILEPSY-RS(ANNEKEDE"OER$R*EROME%NGEL*RAND$R,EONID0RILIPKO'LOBAL#AMPAIGN!GAINST%PILEPSY

    !NINTERNATIONALGROUPOFLEADINGEXPERTSINTHElELDOFEPILEPSYREVIEWEDTHEPROJECTREPORTANDPROVIDEDCOMMENTS4HEYINCLUDE$R#ARLOS!CEVEDO$R(ASAN!ZIZ$R#HARLES"EGLEY$R3AM"ERKOVIC$R.ADIR"HARUCHA$R:ENEBE'EDLIE$AMTIE$R3ALEH-!L$EEB$R!MADOU'ALLO$IOP$R*OHN$UNCAN$R*EROME%NGEL*R$R0ETER(ALASZ$R3HICHUO,I$R%MILIO0ERUCCA$R*OSEMIR73ANDER$R-ASAKAZU3EINO$R.IMAL3ENANAYAKEAND$R4ORBJRN4OMSON

    !NUMBEROFCOLLEAGUESAT7(/GAVEADVICEANDGUIDANCEDURINGTHECOURSEOFTHEPROJECTINPARTICULAR$R*OS"ERTOLOTE$R-ICHELLE&UNKAND$R6LADIMIR0OZNYAK

    -RS#AROLINE-ORTONHELPEDINTHEDATACOLLECTION!DMINISTRATIVESUPPORTWASPROVIDEDBY-S+ATHY&ONTANILLAAND-S2OSA3EMINARIO

    4HECONTRIBUTIONOFALLOFTHEABOVEALONGWITHINPUTFROMMANYOTHERUNNAMEDPEOPLEHASBEENVITALTOTHESUCCESSOFTHISPROJECT

    !SSISTANCEINPREPARINGTHE!TLASFORPUBLICATIONWASRECEIVEDFROM4USHITA"OSONETGRAPHICDESIGN3TEVE%WARTMAPSAND"ARBARA#AMPANINIEDITING

  • 02%&!#%

    4HEREISCONSIDERABLEEVIDENCETHATTHEGLOBALBURDENOFMENTALANDNEUROLOGICALDISORDERSISMASSIVEANDISINCREASING!TTHESAMETIMELITTLEISKNOWNABOUTTHERESOURCESAVAILABLETOMEETTHISBURDENINFORMATIONISSCARCEINTHEVASTMAJORITYOFCOUNTRIESWHILETHEINFORMATIONTHATISAVAILABLEISNOTCOMPARABLEACROSSDIFFERENTCOUNTRIESOROVERTIME!CCURATEANDUPTODATEINFORMATIONISREQUIREDONTHEAVAILABLERESOURCESFORTHESEDISORDERSANDTHEIRDISTRIBUTIONINVARIOUSREGIONSOFTHEWORLD

    )NORDERTOTRYANDlLLTHISKNOWLEDGEGAPTHE7ORLD(EALTH/RGANIZATION7(/LAUNCHED0ROJECT!TLAS4HEOBJECTIVESOFTHEPROJECTINCLUDECOLLECTIONCOMPILATIONANDDISSEMINATIONOFRELEVANTINFORMATIONABOUTRESOURCESFORMENTALANDNEUROLOGICALCONDITIONSINCOUNTRIES4HElRSTDOCUMENTINTHISSERIESWASPUBLISHEDINASTHE!TLASOFMENTALHEALTHRESOURCESINTHEWORLDFOLLOWEDBYTHE!TLASOFCOUNTRYRESOURCESFORNEUROLOGICALDISORDERSIN!MONGOTHERlNDINGSEPILEPSYWASCONlRMEDASONEOFTHEMAJORBRAINDISORDERSWORLDWIDE%PILEPSYPRESENTSAGLOBALPROBLEMAFFECTINGALLAGESSOCIALCLASSESGROUPSANDCOUNTRIES)TIMPOSESENORMOUSPHYSICALPSYCHOLOGICALSOCIALANDECONOMICBURDENSONINDIVIDUALSFAMILIESANDCOUNTRIES-ANYPEOPLEWITHEPILEPSYSUFFERINSILENCEAFRAIDTOBEFOUNDOUT4HESEPROBLEMSAREUNIVERSALBUTCAUSETHEMOSTSERIOUSIMPACTINTHEDEVELOPINGWORLD4HISISMOSTUNFORTUNATESINCEEPILEPSYPROVIDESTHECLEARESTEXAMPLEOFANEUROLOGICALDISORDERFORWHICHEFFECTIVEANDCOSTEFlCIENTTREATMENTISAVAILABLEANDSOMEOFPEOPLEWITHEPILEPSYCOULDLEADNORMALLIVESIFPROPERLYDIAGNOSEDANDTREATED

    )NORDERTOMAPTHERESOURCESAVAILABLEFOREPILEPSYCARE7(/DECIDEDTOPRODUCEAN!TLASONCOUNTRYRESOURCESFOREPILEPSYWITHINTHEFRAMEWORKOFTHE'LOBAL#AMPAIGN!GAINST%PILEPSY4HE'LOBAL#AMPAIGN!GAINST%PILEPSY

    nWHOSETHEMEISh/UTOFTHE3HADOWSvnISAPARTNERSHIPOFTHE)NTERNATIONAL,EAGUE!GAINST%PILEPSY),!%WITHMEMBERORGANIZATIONSINMORETHANCOUNTRIESTHE)NTERNATIONAL"UREAUFOR%PILEPSY)"%WITHOVERFULLMEMBERSANDASSOCIATEMEMBERSAND7(/ASPECIALIZEDAGENCYOFTHE5NITED.ATIONSWITH-EMBER3TATES),!%MEMBERORGANIZATIONSCONSISTOFPROFESSIONALSCONCERNEDWITHMEDICALANDSCIENTIlCASPECTSOFEPILEPSYWHILETHOSEOF)"%ARECONCERNEDWITHSOCIALASPECTSANDTHEQUALITYOFLIFEOFPEOPLEWITHEPILEPSY

    4OGATHERINFORMATIONFORTHIS!TLASAQUESTIONNAIREWASDEVELOPEDBYANUMBEROFEXPERTSCOVERINGTHEPROlLEOFEPILEPSYRESOURCESAVAILABLEINCOUNTRIES4HEWORKSTARTEDINANDDATAHAVEBEENCOLLECTEDFROMCOUNTRIESSPANNINGALL7(/REGIONSANDCOVERINGOFTHEWORLDPOPULATIONMAKINGTHISAGLOBALEXERCISE7EARENOTAWAREOFANYOTHEREXERCISEINTHElELDOFEPILEPSYTHATCANCOMPAREWITHTHEPRESENTONEFORITSCOVERAGEANDCOMPREHENSIVENATURE

    4HEDATACONlRMWHATPROFESSIONALSINTHElELDOFEPILEPSYHAVEKNOWNFORALONGTIMETHATEPILEPSYCAREISGROSSLYINADEQUATECOMPAREDWITHTHENEEDSINMOSTCOUNTRIEShWHENITCOMESTOEPILEPSYCAREMOSTCOUNTRIESAREDEVELOPINGCOUNTRIESv4HEVALUEOFTHE!TLASISTHATITREPLACESIMPRESSIONSANDOPINIONSBYFACTSANDlGURES)NFOLLOWINGUNIFORMDElNITIONSANDUNITSITALLOWSFORCOMPARISONSTOBEMADEACROSSCOUNTRIESANDREGIONS

    7EHOPETHATTHEREALITIESUNCOVEREDBYTHE!TLASWILLMOTIVATEGOVERNMENTSANDHEALTHCAREPROVIDERSTOIMPROVEEPILEPSYCARE4HEPICTUREISCLEARANDTHEGOALISWITHINREACHTOBRINGEPILEPSYOUTOFTHESHADOWS

    -RS(ANNEKE-DE"OER#O#HAIR),!%)"%7(/'LOBAL#AMPAIGN!GAINST%PILEPSY

    $R,EONID,0RILIPKO0ROGRAMME,EADER.EUROLOGICAL$ISEASESAND.EUROSCIENCE$EPARTMENTOF-ENTAL(EALTHAND3UBSTANCE!BUSE7ORLD(EALTH/RGANIZATION

    $R3HEKHAR3AXENA#OORDINATOR-ENTAL(EALTH%VIDENCEAND2ESEARCH$EPARTMENTOF-ENTAL(EALTHAND3UBSTANCE!BUSE7ORLD(EALTH/RGANIZATION

  • %8%#54)6%35--!29

    %PILEPSYISONEOFTHEMOSTCOMMONSERIOUSDISORDERSOFTHEBRAINAFFECTINGABOUTMILLIONPEOPLEWORLDWIDE%PILEPSYACCOUNTSFOROFTHEGLOBALBURDENOFDISEASEOFTHEBURDENOFEPILEPSYISINTHEDEVELOPINGWORLDWHEREINSOMEAREASnOFPEOPLEWITHEPILEPSYRECEIVENOTREATMENTATALL.OTMUCHINFORMATIONEXISTSREGARDINGTHERESOURCESAVAILABLEWITHINCOUNTRIESTOTACKLETHEHUGEMEDICALSOCIALANDECONOMICBURDENCAUSEDBYEPILEPSY)NORDERTOlLLTHISGAPINFORMATIONREGARDINGCOUNTRYRESOURCESFOREPILEPSYSERVICESANDCAREWASCOLLECTEDUNDERTHE'LOBAL#AMPAIGN!GAINST%PILEPSY'#!%h/UTOFTHE3HADOWSv4HESTUDYREPRESENTSAMAJORCOLLABORATIVEEFFORTINVOLVING7ORLD(EALTH/RGANIZATION7(/HEADQUARTERSREGIONALANDCOUNTRYOFlCESTHE)NTERNATIONAL,EAGUE!GAINST%PILEPSY),!%ANDTHE)NTERNATIONAL"UREAUFOR%PILEPSY)"%4HISWORKWASUNDERTAKENUNDER7(/S0ROJECT!TLASONGOINGSINCE

    4HE!TLAS%PILEPSY#AREINTHE7ORLDTHE%PILEPSY!TLASPROVIDESANILLUSTRATIVEPRESENTATIONOFDATAANDINFORMATIONONTHECURRENTSTATUSOFEPILEPSYSERVICESANDCAREAVAILABLEFROMCOUNTRIESAREASORTERRITORIESCOVERINGOFTHEWORLDPOPULATION4HEINFORMATIONISPRIMARILYGATHEREDFROMKEYPERSONSINTHEAREAOFEPILEPSYCAREINEACHCOUNTRYIDENTIlEDBY),!%)"%ANDINSOMECASESBY7(/REGIONALOFlCES)TISONEOFTHEMOSTCOMPREHENSIVECOMPILATIONSOFAVAILABLERESOURCESFOREPILEPSYEVERATTEMPTED,IMITATIONSARETOBEKEPTINMINDHOWEVERWHENINTERPRETINGTHEDATAANDTHEIRANALYSES4HEKEYPERSONSWEREAMONGTHEMOSTKNOWLEDGEABLEPERSONSINTHEIRCOUNTRIESBUTTHEPOSSIBILITYREMAINSOFTHEDATABEINGINCOMPLETEANDINCERTAINAREASEVENINACCURATE4HEDRAFTREPORTWASREVIEWEDBYLEADINGEXPERTSINTHElELDOFEPILEPSYANDREGIONALADVISERSOFTHESIX7(/REGIONSANDTHEIRCOMMENTSWEREINCORPORATED4HE%PILEPSY!TLASALSOINCLUDESBRIEFREVIEWSOFSELECTEDTOPICSSUMMARIZINGTHEMEDICALLIFESTYLESOCIALANDECONOMICISSUESSURROUNDINGPEOPLEWITHEPILEPSY

    4HEANALYSESOFTHEREPORTEDAETIOLOGYOFEPILEPSYSHOWTHATTRAUMACENTRALNERVOUSSYSTEMINFECTIONSANTENATALANDPERINATALRISKFACTORSCEREBROVASCULARDISORDERSANDIDIOPATHICAETIOLOGYAREAMONGTHEMOSTFREQUENTLYREPORTEDGLOBALLYASWELLASINALL7(/REGIONS4HEINFORMATIONREGARDINGTHEAETIOLOGYOFEPILEPSYHASIMPLICATIONSFORMAKINGDECISIONSABOUTTHEDEVELOPMENTOFLOCALLYRELEVANTSTRATEGIESFORPREVENTIONANDMANAGEMENTRESEARCHGOALSANDEDUCATIONOFPRIMARYHEALTHCAREWORKERSANDCOMMUNITYPHYSICIANS4HETOPFOURMOSTFREQUENTLYREPORTEDCAUSESOFEPILEPSYAREINFACTPREVENTABLE#ONCERTEDMULTIDISCIPLINARYEFFORTSCONCENTRATINGONTHERISKFACTORSEGENFORCEMENTOFSTRICTTRAFlCREGULATIONSANDIMPROVEMENTINPERINATALCAREORPROVIDINGSPECIlCPROTECTIONEGVACCINATIONFORTHESEPREVENTABLECAUSESCANHELPTODECREASESUBSTANTIALLYTHEBURDENATTRIBUTABLETOEPILEPSY

    &ORAPPROPRIATEMANAGEMENTOFPEOPLEWITHEPILEPSYDIAGNOSTICSERVICESCONSTITUTEANIMPORTANTRESOURCE#OMPUTER

    IZEDAXIALTOMOGRAPHY#!4MAGNETICRESONANCEIMAGING-2)ELECTROENCEPHALOGRAPHY%%'ANDLONGTERMVIDEO%%'MONITORINGAREAVAILABLETOHEALTHPROFESSIONALSINANDOFTHERESPONDINGCOUNTRIESRESPECTIVELY4HERAPEUTICDRUGMONITORINGANDNEUROPSYCHOLOGICALSERVICESAREAVAILABLEINANDOFTHERESPONDINGCOUNTRIESRESPECTIVELY4HESElGURESDONOTINDICATEHOWEVERHOWMANYPEOPLEWHONEEDTHESERVICESCANINFACTMAKEUSEOFTHEMNORHOWAPPROPRIATELYTHESERVICESAREUSED4HEREISINEQUITYINAVAILABILITYOFDIAGNOSTICSERVICESACROSSDIFFERENTINCOMEGROUPSEGNEUROPSYCHOLOGICALSERVICESAREAVAILABLEINOFLOWINCOMECOUNTRIESCOMPAREDWITHOFHIGHINCOMECOUNTRIES-OSTNEWTECHNOLOGIESAREAVAILABLEINMANYCOUNTRIESBUTTHEYAREOFTENCONCENTRATEDINONLYAFEWCENTRESORINMAJORCITIES4HEAIMSHOULDBETOIMPROVETHEIRCOVERAGEINORDERTOSERVETHEENTIREPOPULATION

    4HEMOSTCOSTEFFECTIVEWAYTODECREASETHETREATMENTGAPINTHEMAJORITYOFCOUNTRIESWOULDBETODELIVERTHEEPILEPSYSERVICESTHROUGHPRIMARYHEALTHCARE4HEMAINTASKSOFTHEPERSONNELINPRIMARYCARESETTINGSINVOLVEDINEPILEPSYCAREASREPORTEDBYCOUNTRIESINCLUDEFOLLOWUPANDMONITORINGOFTREATMENTMAINTENANCEANDORPRESCRIPTIONOFANTIEPILEPTICDRUGSINFORMATIONANDEDUCATIONOFTHEPATIENTSANDCAREGIVERSREFERRALOFPATIENTSWITHEPILEPSYFORSPECIALISTTREATMENTANDCASElNDING)NTERESTINGLYINFORMATIONANDEDUCATIONOFPATIENTSANDCAREGIVERSREGARDINGEPILEPSYWASMENTIONEDASONEOFTHElVEMAINTASKSBYOFTHELOWINCOMECOUNTRIESCOMPAREDWITHOFTHEHIGHINCOMECOUNTRIES

    3EPARATEHOSPITALBEDSFOREPILEPSYMANAGEMENTMAYNOTBEDESIRABLEINMANYCOUNTRIESWHERETHEPRIORITYISSTILLTOPROVIDEAPPROPRIATEEPILEPSYTREATMENTATTHEPRIMARYCARELEVEL(OWEVERASPECIALFACILITYFORPROVIDINGREFERRALSERVICESASAPARTOFAGENERALHEALTHSERVICEISNECESSARYFORTHECOMPREHENSIVEMANAGEMENTOFEPILEPSY2EFERRALSERVICESAREALSOANIMPORTANTINDICATOROFTHELEVELOFORGANIZATIONOFEPILEPSYSERVICESINACOUNTRY.OINPATIENTFACILITYFOREPILEPSYCAREEXISTSINOFTHERESPONDINGCOUNTRIES!TOTALOFHOSPITALBEDSFOREPILEPSYCAREAREREPORTEDTOBEAVAILABLEINCOUNTRIES/FTHETOTALNUMBEROFBEDSONETHIRDISREPORTEDTOBEFORSHORTTERMEPILEPSYCAREWHILETHERESTAREFORRESIDENTIALLONGTERMCARE

    $ATAREGARDINGTHEINCLUSIONOFlRSTLINEANTIEPILEPTICDRUGSINTHECOUNTRYSLISTOFESSENTIALDRUGSSHOWTHATPHENOBARBITALISINCLUDEDINOFTHERESPONDINGCOUNTRIESCARBAMAZEPINEINPHENYTOININANDVALPROICACIDIN!GOVERNMENTPOLICYREGARDINGTHEIRAVAILABILITYONLYBYPRESCRIPTIONEITHERFROMAGENERALPRACTITIONERORASPECIALISTEXISTSINMORETHANOFTHECOUNTRIES4HEMEDIANCOSTOFTHEDAILYDElNEDDOSE$$$OFTHESEININTERNATIONALDOLLARSVARIES7HILEWORLDWIDETHEMEDIANCOSTOFPHENOBARBITALISINTERNATIONALDOLLARSITISTHREEFOLDFORPHENYTOINELEVENFOLDFORCARBAMAZEPINEANDTIMESMOREFORVALPROICACID)NINTERNATIONALDOLLARSTHEMEDIANCOSTOFTREATMENTFOREPILEPSYISTHREEANDHALFTIMESHIGHERFORCARBAMAZEPINEPHENYTOIN

  • %8%#54)6%35--!29

    ANDVALPROICACIDANDTWOTIMESHIGHERFORPHENOBARBITALINLOWINCOMECOUNTRIESCOMPAREDWITHHIGHINCOMECOUNTRIES4HEINEQUITYINTHECOSTOFlRSTLINEANTIEPILEPTICDRUGSACROSSREGIONSCOUNTRIESANDINCOMECATEGORIESNEEDSTOBESPECIlCALLYCONFRONTED

    4HEPRESENCEOFSUBSPECIALIZEDEPILEPSYSERVICESINDICATESTHELEVELOFORGANIZATIONANDDEVELOPMENTOFEPILEPSYCAREINACOUNTRY3UBSPECIALIZEDSERVICESAREIMPORTANTBECAUSEMANYPEOPLEWITHEPILEPSYREQUIREHIGHLYSPECIALIZEDSKILLSFORAPPROPRIATEDIAGNOSISANDMANAGEMENT3UCHSERVICESALSOPROVIDETHEBASISFORCONDUCTINGRESEARCHANDTRAINING4HERESPONDENTSREPORTEDAVAILABILITYOFSPECIALEDUCATIONINOFTHERESPONDINGCOUNTRIESSOCIALREHABILITATIONINEPILEPSYSURGERYINANDSHELTEREDWORKIN4HEREISLARGEVARIATIONINTHEIRAVAILABILITYACROSSDIFFERENTINCOMEGROUPSOFCOUNTRIESEGEPILEPSYSURGERYISAVAILABLEINONLYOFLOWINCOMECOUNTRIESCOMPAREDWITHOFHIGHINCOMECOUNTRIES

    3PECIALISTMEDICALPROFESSIONALSAREIMPORTANTMEMBERSOFTHETEAMPROVIDINGCOMPREHENSIVECAREESPECIALLYATTERTIARYLEVELFORPEOPLEWITHEPILEPSY4HEYAREALSOESSENTIALFORTRAININGANDPROVIDINGSUPPORTANDSUPERVISIONTOPRIMARYHEALTHCAREPROVIDERSINEPILEPSYCARE4HERESPONDENTSWEREASKEDABOUTTHENUMBEROFSPECIALISTMEDICALPROFESSIONALSSUCHASNEUROLOGISTSNEUROPAEDIATRICIANSPSYCHIATRISTSANDNEUROSURGEONSSPENDINGORMOREOFTHEIRTIMEINPROVIDINGEPILEPSYCARE4HISASSESSMENTISUSEDASAMARKEROFTHEIRPREDOMINANTINVOLVEMENTINPROVIDINGEPILEPSYCARE!TOTALOFNEUROLOGISTSNEUROPAEDIATRICIANSPSYCHIATRISTSANDNEUROSURGEONSAREREPORTEDTOBEINVOLVEDPREDOMINANTLYINPROVIDINGEPILEPSYCAREINTHERESPONDINGCOUNTRIESANDCOUNTRIESREPORTEDNEUROLOGISTSNEUROPAEDIATRICIANSPSYCHIATRISTSANDNEUROSURGEONSRESPECTIVELY4HEMEDIANNUMBERSPERPOPULATIONOFNEUROLOGISTSNEUROPAEDIATRICIANSPSYCHIATRISTSANDNEUROSURGEONSINTHECOUNTRIESTHATREPORTTHEIRPRESENCEAREANDRESPECTIVELY4HEPERCENTAGEOFSPECIALISTMEDICALPROFESSIONALSINVOLVEDPREDOMINANTLYINEPILEPSYCAREVARIESACROSSREGIONSANDINCOMEGROUPSOFCOUNTRIESEGOFTHETOTALNEUROLOGISTSAREINVOLVEDPREDOMINANTLYINPROVIDINGEPILEPSYCAREINLOWINCOMECOUNTRIESCOMPAREDWITHINHIGHINCOMECOUNTRIES-OREPSYCHIATRISTSAREINVOLVEDPREDOMINANTLYINEPILEPSYCAREINLOWINCOMECOUNTRIESCOMPAREDWITHHIGHINCOMECOUNTRIESMEDIANPERPOPULATIONANDRESPECTIVELY/NEOFTHEPOSSIBLEREASONSFORTHISCOULDBETHEPRESENCEOFTHEPRACTICEWHEREPSYCHIATRISTSRATHERTHANNEUROLOGISTSTAKECAREOFPEOPLEWITHEPILEPSY

    0ROFESSIONALSALLIEDTOMEDICINESUCHASNEUROLOGICALNURSESPSYCHOLOGISTSANDSOCIALWORKERSAREIMPORTANTMEMBERSOFTHEMULTIDISCIPLINARYTEAMPROVIDINGCOMPREHENSIVECARETOPEOPLEWITHEPILEPSY4HEYPLAYANIMPORTANTROLEINTHEDIAGNOSISTREATMENTANDREHABILITATIONOFPEOPLEWITHEPILEPSY!TOTALNUMBEROFSUCHPROFESSIONALSINVOLVED

    INEPILEPSYCAREEXISTINTHERESPONDINGCOUNTRIESANDCOUNTRIESREPORTEDNEUROLOGICALNURSESPSYCHOLOGISTSANDSOCIALWORKERSRESPECTIVELY4HEMEDIANNUMBERSPERPOPULATIONOFNEUROLOGICALNURSESPSYCHOLOGISTSANDSOCIALWORKERSINTHECOUNTRIESTHATREPORTTHEIRPRESENCEAREANDRESPECTIVELY,OWINCOMECOUNTRIESHAVEAMEDIANNUMBEROFPERPOPULATIONOFSOCIALWORKERSINVOLVEDPREDOMINANTLYINEPILEPSYCAREWHEREASHIGHERMIDDLEANDHIGHINCOMECOUNTRIESHAVEANDPERPOPULATIONRESPECTIVELY4HEPERCENTAGEOFPROFESSIONALSALLIEDTOMEDICINEINVOLVEDPREDOMINANTLYINEPILEPSYCAREISLOWEGONLYOFTHETOTALNUMBERSOFPSYCHOLOGISTSAREINVOLVEDPREDOMINANTLYINPROVIDINGEPILEPSYCARE

    %PILEPSYSPECIALISTSAREPROFESSIONALSINTHEHEALTHSECTORDEVOTEDPREDOMINANTLYTOPROVIDINGEPILEPSYCARE4HEYPLAYANIMPORTANTROLEINAWARENESSRAISINGADVOCACYANDEDUCATIONOFPROFESSIONALSPEOPLEWITHEPILEPSYANDTHEGENERALPUBLIC4HESEASPECTSAREPERTINENTFORADISORDERSUCHASEPILEPSYWHERESOCIOCULTURALISSUESAREAMAJORBARRIERTOADEQUATETREATMENTANDREHABILITATION%PILEPSYSPECIALISTSAREREPORTEDTOBEAVAILABLEINOFTHERESPONDINGCOUNTRIES7HILETHEYPROVIDECARETOPEOPLEWITHEPILEPSYINOFHIGHINCOMECOUNTRIESTHEYEXISTINONLYOFLOWINCOMECOUNTRIES4HEMAINSERVICESPROVIDEDBYEPILEPSYSPECIALISTSINCLUDEPATIENTCAREBYDIAGNOSINGANDDOCUMENTINGCASESOFEPILEPSYANDCARRYINGOUTINVESTIGATIONSSUCHAS%%'ANDVIDEO%%'MONITORINGINOFTHECOUNTRIESPROVIDINGTREATMENTANDFOLLOWUPSERVICESPROVIDINGCONSULTATIONSERVICESFORREFERREDPATIENTSANDEDUCATIONSERVICESANDCOUNSELLINGTOPEOPLEWITHEPILEPSYANDTHEGENERALPUBLICTHUSRAISINGAWARENESS

    3PECIALISTTRAININGINEPILEPTOLOGYISNEEDEDONMULTIPLELEVELSTOREACHALLTHOSECONCERNEDWITHEPILEPSYMANAGEMENT4RAININGFACILITIESINEPILEPTOLOGYAREHOWEVERAVAILABLEINONLYOFTHERESPONDINGCOUNTRIES.OFACILITYFORTRAININGINEPILEPTOLOGYISREPORTEDBYCOUNTRIESINTHE3OUTH%AST!SIA2EGIONWHEREASSUCHFACILITIESEXISTINOFTHECOUNTRIESIN!FRICAINTHE%ASTERN-EDITERRANEANINTHE7ESTERN0ACIlCINTHE!MERICASANDIN%UROPE%DUCATIONALMATERIALSINCLUDINGSTANDARDGUIDELINESFORDIAGNOSISANDCAREOFPEOPLEWITHEPILEPSYOUGHTTOBEPRODUCEDANDDISTRIBUTEDINRESOURCEPOORCOUNTRIESWHERETRAININGFACILITIESCANNOTBEESTABLISHEDBECAUSEOFTHEHIGHCOSTSINVOLVED/PPORTUNITIESFORTHETRAININGOFPROFESSIONALSINVOLVEDINEPILEPSYCAREFROMLOWINCOMECOUNTRIESSHOULDALSOBEENCOURAGED

    4HEPRESENCEOFPROFESSIONALORGANIZATIONSOFEPILEPSYSPECIALISTSISANIMPORTANTASPECTOFTHEPROVISIONOFTHEHIGHESTQUALITYOFCAREANDWELLBEINGFORPEOPLEWITHEPILEPSYOROTHERRELATEDSEIZUREDISORDERS!PROFESSIONALORGANIZATIONOFEPILEPSYSPECIALISTSEXISTSINOFTHERESPONDINGCOUNTRIESSUCHANORGANIZATIONDOESNOTEXISTINOFTHELOWINCOMECOUNTRIESORINOFTHEHIGHINCOMECOUNTRIES4HEMEDIANNUMBEROFPROFESSIONALSPER

  • %8%#54)6%35--!29

    POPULATIONWHOAREMEMBERSOFANORGANIZATIONOFEPILEPSYSPECIALISTSISIN!FRICACOMPAREDWITHIN%UROPE4HEPROFESSIONALORGANIZATIONSOFEPILEPSYSPECIALISTSAREMAINLYINVOLVEDINORGANIZINGPROFESSIONALMEETINGSANDCONFERENCESONEPILEPSYPUBLISHINGGUIDELINESANDRECOMMENDATIONSONEPILEPSYADVOCACYONEPILEPSYRELATEDISSUESANDADVISINGGOVERNMENTS!LARGENUMBEROFTHESEORGANIZATIONSWORKUNDERTHEUMBRELLAOF),!%LEADINGTOACOLLABORATIVEEFFORTINVARIOUSACTIVITIESRELATEDTOPATIENTCAREEDUCATIONTRAININGANDRESEARCH

    4HELAYASSOCIATIONSHAVEASIGNIlCANTROLEINHANDLINGTHENONMEDICALASPECTSOFEPILEPSYINCLUDINGEDUCATIONEMPLOYMENTINSURANCEDRIVINGANDAWARENESSRAISINGTHESEACTIVITIESARECRUCIALINPROVIDINGEPILEPSYCARE-ANYOFTHEPATIENTASSOCIATIONSAREMEMBERSOF)"%/FTHERESPONDINGCOUNTRIESHAVEATLEASTONEPATIENTORLAYASSOCIATIONWORKINGINTHElELDOFEPILEPSY.OPATIENTORLAYEPILEPSYASSOCIATIONEXISTSINOFTHERESPONDINGCOUNTRIESINTHE%ASTERN-EDITERRANEANIN!FRICAIN3OUTH%AST!SIAINTHE7ESTERN0ACIlCINTHE!MERICASANDIN%UROPE

    !DEQUATElNANCINGOFEPILEPSYSERVICESISESSENTIALTOPROVIDINGTHENEEDEDCARE(OWEVERONLYOFTHERESPONDINGCOUNTRIESHAVEASEPARATEBUDGETFOREPILEPSYSERVICESWITHINTHEIRHEALTHBUDGETS/UTOFPOCKETPAYMENTTAXBASEDFUNDINGANDSOCIALINSURANCEARETHEPRIMARYMETHODSOFlNANCINGEPILEPSYCAREEACHMETHODBEINGUSEDINABOUTONETHIRDOFTHERESPONDINGCOUNTRIES0RIVATEINSURANCEANDPRIVATEFOUNDATIONSCONSTITUTEANDRESPECTIVELYASTHEPRIMARYMETHODOFlNANCING/UTOFPOCKETEXPENSESARETHEPRIMARYSOURCEOFlNANCINGEPILEPSYCAREIN!FRICA3OUTH%AST!SIAANDTHE%ASTERN-EDITERRANEANSOCIALINSURANCEIN%UROPEANDTHE!MERICASANDTAXBASEDFUNDINGINTHE7ESTERN0ACIlC/UTOFPOCKETEXPENDITUREISTHEPRIMARYMETHODOFlNANCINGEPILEPSYCAREINOFLOWINCOMECOUNTRIESCOMPAREDWITHOFHIGHINCOMECOUNTRIES%PILEPSYSERVICESARESCARCEINLOWINCOMECOUNTRIESANDONTOPOFTHATPATIENTSHAVETOPAYRESULTINGINFURTHERINEQUITYINTHEUTILIZATIONOFSERVICES%FFORTSNEEDTOBEMADETOINTRODUCESOMEFORMOFPUBLIClNANCINGINTOTHEHEALTHINFRASTRUCTUREOFCOUNTRIESTOCOVEREPILEPSYSERVICES

    $ISABILITYBENElTSOFSOMEFORMFORPEOPLEWITHEPILEPSYAREAVAILABLEINOFTHERESPONDINGCOUNTRIES$ISABILITYBENElTSAREAVAILABLEINONLYOFTHELOWINCOMECOUNTRIESCOMPAREDWITHOFHIGHINCOMECOUNTRIES4HETYPESOFDISABILITYBENElTSAVAILABLEINCLUDEMONETARYBENElTSREHABILITATIONANDHEALTHBENElTSBENElTSATTHEWORKPLACEANDOTHERBENElTSINCLUDINGHOUSINGTRANSPORTEDUCATIONANDSPECIALDISCOUNTS%FFORTSNEEDTOBEMADETOADVOCATEBETTERPROVISIONOFBENElTSFORFUNCTIONALLYDISABLEDPEOPLEWITHEPILEPSYESPECIALLYINRESOURCEPOORCOUNTRIESWHERETHEYAREMOSTNEEDED

    !NORGANIZEDHEALTHREPORTINGSYSTEMISESSENTIALINASSESSINGTHESITUATIONSOASTOENABLETHEHEALTHPLANNERSTODECIDE

    HOWTOUSEVARIOUSRESOURCES%PILEPSYISINCLUDEDINTHEANNUALHEALTHREPORTINGSYSTEMOFOFTHERESPONDINGCOUNTRIES%PIDEMIOLOGICALDATAFACILITATETHEGATHERINGOFINFORMATIONREGARDINGTHEDISEASEBURDENANDTRENDSANDHELPTOIDENTIFYTHEHIGHPRIORITYISSUES4HISINFORMATIONISHIGHLYUSEFULFORPLANNINGHEALTHSERVICESANDMONITORINGTRENDSOVERTIME!DATACOLLECTIONSYSTEMFOREPILEPSYEXISTSINOFTHERESPONDINGCOUNTRIES%FFORTSNEEDTOBEMADETOINCREASETHENUMBEROFCOUNTRIESCOLLECTINGEPILEPSYDATA

    -ANYCONSTRAINTSANDDIFlCULTIESHINDERTHEPROVISIONOFADEQUATEEPILEPSYCAREINCOUNTRIES1UALITATIVEDATAWEREALSOCOLLECTEDABOUTTHEMAJORPROBLEMSENCOUNTEREDBYHEALTHPROFESSIONALSANDPEOPLEWITHEPILEPSY,ACKOFDRUGSUPPLYDUEEITHERTOLOGISTICSORTOECONOMYPOORCOMMUNITYKNOWLEDGEANDAWARENESSCULTURALBELIEFSSTIGMALACKOFGOVERNMENTRESOURCESPOORECONOMYANDLACKOFINFRASTRUCTUREAREIDENTIlEDASMAJORPROBLEMSBYBOTHHEALTHPROFESSIONALSANDPEOPLEWITHEPILEPSY&ACTORSRELATEDTOHEALTHSERVICESINCLUDINGCAPITALANDHUMANRESOURCESAREIDENTIlEDMORECOMMONLYASMAJORPROBLEMSBYHEALTHPROFESSIONALSTHANBYPEOPLEWITHEPILEPSY,ACKOFSOCIALANDREHABILITATIONSUPPORTANDTHESOCIALBURDENOFTHEDISORDERHOWEVERAREIDENTIlEDMORECOMMONLYBYPEOPLEWITHEPILEPSYTHANBYHEALTHPROFESSIONALS4HESOCIALISSUESIDENTIlEDBYRESPONDENTSINCLUDEEMPLOYMENTDRIVINGMARRIAGESOCIALISOLATIONANDEDUCATIONOPPORTUNITIES4HETREATMENTGAPFOREPILEPSYTHUSHASTOBEUNDERSTOODINTERMSOFTHEECONOMICSOCIALPOLITICALANDCULTURALFRAMEWORKSWITHINWHICHITEXISTS!LLOFTHESEASPECTSNEEDTOBETACKLEDTODECREASETHETREATMENTGAP4HEREWEREDIFFERENCESREPORTEDINTHEPROBLEMSENCOUNTEREDAMONGVARIOUSREGIONSORINCOMECATEGORIES4HISMAYSUGGESTTHERELATIVEIMPORTANCEOFAPARTICULARISSUERATHERTHANITSABSOLUTEIMPORTANCEEGINLOWINCOMECOUNTRIESAVAILABILITYOFEPILEPSYSURGERYISCONSIDEREDDESIRABLEBUTNOTAPRIMARYASSETTHATMUSTBEAVAILABLE!LSOTHEDATAREPRESENTTHEISSUESOFHIGHESTPRIORITYTHATNEEDIMMEDIATEIMPROVEMENT

    /NTHEWHOLETHE%PILEPSY!TLASDATASHOWTHATTHEAVAILABLERESOURCESFOREPILEPSYCAREINTHEWORLDAREINSUFlCIENTWHENSETAGAINSTTHELARGENUMBERSOFPEOPLENEEDINGSUCHCAREANDTHEKNOWNSIGNIlCANTBURDENASSOCIATEDWITHTHISDISORDER)NADDITIONTHEREARELARGEINEQUITIESACROSSREGIONSANDINCOMEGROUPSOFCOUNTRIESWITHLOWINCOMECOUNTRIESHAVINGEXTREMELYMEAGRERESOURCES"ECAUSETHEPREVALENCEOFEPILEPSYISMUCHHIGHERANDRESOURCESAREMUCHLOWERINLOWINCOMECOUNTRIESTHE%PILEPSY!TLASREINFORCESTHENEEDFORURGENTSUBSTANTIALANDSYSTEMATICACTIONTOENHANCERESOURCESWITHINTHESECOUNTRIESFOREPILEPSYCARE

  • ).42/$5#4)/.

    4HEWORDEPILEPSYDERIVESFROMTHE'REEKEPILAMBANEINMEANINGTOBESEIZEDTOBEOVERWHELMEDBYSURPRISE%PILEPSYISONEOFTHEMOSTCOMMONSERIOUSDISORDERSOFTHEBRAINAFFECTINGATLEASTMILLIONPEOPLEWORLDWIDE)TKNOWSNOGEOGRAPHICALRACIALORSOCIALBOUNDARIES%PILEPSYACCOUNTSFOROFTHEGLOBALBURDENOFDISEASEDETERMINEDBYTHENUMBEROFPRODUCTIVELIFEYEARSLOSTASARESULTOFDISABILITYORPREMATUREDEATH!MONGPRIMARYDISORDERSOFTHEBRAINTHISBURDENRANKSWITHDEPRESSIONANDOTHERAFFECTIVEDISORDERS!LZHEIMERSDISEASEANDOTHERDEMENTIASANDSUBSTANCEABUSE!MONGALLMEDICALCONDITIONSITRANKSWITHBREASTCANCERINWOMENANDLUNGCANCERINMEN%IGHTYPERCENTOFTHEBURDENOFEPILEPSYISINTHEDEVELOPINGWORLDWHEREnOFPEOPLEWITHEPILEPSYRECEIVENOTREATMENTATALL)TISALSONECESSARYTORECOGNIZETHATEPILEPSYCONSISTSOFMORETHANSEIZURESFORTHEAFFECTEDINDIVIDUALANDEFFECTSONHISORHERFAMILY%PILEPSYLEADSTOMULTIPLEINTERACTINGMEDICALPSYCHOLOGICALECONOMICANDSOCIALREPERCUSSIONSALLOFWHICHNEEDTOBECONSIDERED

    &EARMISUNDERSTANDINGANDTHERESULTINGSOCIALSTIGMAANDDISCRIMINATIONSURROUNDINGEPILEPSYOFTENFORCEPEOPLEWITHTHISDISORDERhINTOTHESHADOWSv4HESOCIALEFFECTSMAYVARYFROMCOUNTRYTOCOUNTRYANDCULTURETOCULTUREBUTITISCLEARTHATALLOVERTHEWORLDTHESOCIALCONSEQUENCESOFEPILEPSYAREOFTENMOREDIFlCULTTOOVERCOMETHANTHESEIZURESTHEMSELVES3IGNIlCANTPROBLEMSAREOFTENEXPERIENCEDBYPEOPLEWITHEPILEPSYINTHEAREASOFPERSONALRELATIONSHIPSANDSOMETIMESLEGISLATION4HESEPROBLEMSMAYINTURNUNDERMINETHETREATMENTOFEPILEPSY

    4OBRINGEPILEPSYhOUTOFTHESHADOWSvA'LOBAL#AMPAIGN!GAINST%PILEPSYWASLAUNCHEDINhTOIMPROVEACCEPTABILITYTREATMENTSERVICESANDPREVENTIONOFEPILEPSYWORLDWIDEv4HE#AMPAIGNISCONDUCTEDBYTHE7ORLD(EALTH/RGANIZATION7(/INPARTNERSHIPWITHTHE)NTERNATIONAL,EAGUE!GAINST%PILEPSY),!%ANDTHE)NTERNATIONAL"UREAUFOR%PILEPSY)"%4HEAIMOFTHE#AMPAIGNISPRINCIPALLYTOREDUCETHETREATMENTGAPBYPROVIDINGBETTERINFORMATIONABOUTEPILEPSYANDITSCONSEQUENCESANDTOASSISTGOVERNMENTSANDTHOSECONCERNEDWITHEPILEPSYTOREDUCETHEBURDENOFTHEDISORDER

    -AJORADVANCESINTHEUNDERSTANDINGANDTREATMENTOFEPILEPSYHAVEOCCURREDINTHELASTCENTURYANDRESEARCHHASBEENCARRIEDOUTONTHEEPIDEMIOLOGICALDIAGNOSTICANDSOCIALASPECTSOFTHEDISORDER.OTMUCHINFORMATIONEXISTSHOWEVERREGARDINGTHERESOURCESAVAILABLEWITHINTHECOUNTRIESTOTACKLETHEHUGEMEDICALSOCIALANDECONOMICBURDENCAUSEDBYEPILEPSY4HEINFORMATIONTHATEXISTSCANNOTBECOMPAREDACROSSCOUNTRIESBECAUSEVARYINGDElNITIONSANDUNITSOFMEASUREMENTAREUSED,ACKOFINFORMATIONABOUTEXISTINGRESOURCESISAMAJORIMPEDIMENTFORTHEPOLICYMAKERSATLOCALNATIONALANDINTERNATIONALLEVELFORPLANNINGAPPROPRIATESERVICESFOREPILEPSYCARE)NORDERTO

    IMPROVETHEAVAILABILITYOFRESOURCESINTHECOUNTRIESACCURATEINFORMATIONABOUTEXISTINGRESOURCESISCRUCIAL

    )NORDERTOlLLTHEINFORMATIONGAPABOUTTHERESOURCESAVAILABLEFORCAREOFPATIENTSWITHMENTALANDNEUROLOGICALDISORDERS7(/LAUNCHED0ROJECT!TLASINAIMEDATCOLLECTINGCOMPILINGANDDISSEMINATINGINFORMATIONANDDATAONTHEEXISTINGRESOURCESANDSERVICES4HElRSTDOCUMENTINTHESERIESWASPUBLISHEDINASTHE!TLASOFMENTALHEALTHRESOURCESINTHEWORLDFOLLOWEDBYTHE!TLASOFCOUNTRYRESOURCESFORNEUROLOGICALDISORDERSIN"ECAUSEEPILEPSYCAREISONEOFTHEPRIORITYAREASOF7(/TOBRIDGETHEINFORMATIONGAPINTHISAREAITWASDECIDEDTOEXPAND0ROJECT!TLASINTOTHEAREAOFEPILEPSYANDTOCONDUCTASURVEYOFCOUNTRYRESOURCESAVAILABLEFOREPILEPSYCARE4HEMAINOBJECTIVESOFTHISLARGEINTERNATIONALSTUDYWERETOOBTAINEXPERTOPINIONABOUT

    UAETIOLOGYOFEPILEPSYANDPROBLEMSENCOUNTEREDBYPEOPLEWITHEPILEPSYANDHEALTHPROFESSIONALSINVOLVEDINEPILEPSYCARE

    UAVAILABILITYOFEPILEPSYTREATMENTSANDSERVICESINCLUDINGANTIEPILEPTICDRUGS

    UNUMBERANDTYPESOFHEALTHPROFESSIONALSINVOLVEDINTHEDELIVERYOFEPILEPSYCARE

    UCHARACTERISTICSOFTRAININGINEPILEPTOLOGY

    UBUDGETANDlNANCINGFOREPILEPSYCAREINCLUDINGVARIOUSTYPESOFHEALTHINSURANCEANDDISABILITYBENElTS

    UPRESENCEANDCHARACTERISTICSOFINFORMATIONANDEPIDEMIOLOGICALDATACOLLECTIONSYSTEMSFOREPILEPSY

    UAVAILABILITYROLEANDINVOLVEMENTOFPROFESSIONALPATIENTANDLAYASSOCIATIONSFOREPILEPSY

    4HE%PILEPSY!TLASHASBEENANIMPORTANTACTIVITYOFTHE'LOBAL#AMPAIGN!GAINST%PILEPSY4HESTUDYREPRESENTSAMAJORCOLLABORATIVEEFFORTINVOLVING7(/HEADQUARTERSREGIONALANDCOUNTRYOFlCES),!%AND)"%4HE%PILEPSY!TLASPROVIDESANILLUSTRATIVEPRESENTATIONOFDATAANDINFORMATIONONTHECURRENTSTATUSOFEPILEPSYSERVICESANDCAREAVAILABLEINDIFFERENTPARTSOFTHEWORLD)TISHOPEDTHATTHE%PILEPSY!TLASDATAWILLSTIMULATEGLOBALANDNATIONALEPILEPSYPROGRAMMES)TWILLBEAUSEFULREFERENCEGUIDEFORHEALTHPROFESSIONALSPLANNERSANDPOLICYMAKERSATNATIONALASWELLASINTERNATIONALLEVELSHELPINGTHEMINPLANNINGDEVELOPINGANDPROVIDINGBETTERCAREANDSERVICESFORPEOPLEWITHEPILEPSYTHROUGHOUTTHEWORLD

  • -%4(/$/,/'9

    !LLTHEINFORMATIONANDDATACONTAINEDINTHE%PILEPSY!TLASHAVEBEENCOLLECTEDINALARGEINTERNATIONALSURVEYWHICHWASCARRIEDOUTINTHEPERIODnANDINCLUDEDCOUNTRIESAREASORTERRITORIES

    $ATACOLLECTION

    4HE%PILEPSY!TLASISBASEDONTHEINFORMATIONANDDATACOLLECTEDBY7(/INCOLLABORATIONWITH),!%AND)"%WITHINTHEFRAMEWORKOFTHE'LOBAL#AMPAIGN!GAINST%PILEPSY!T7(/THEWORKWASLEDBYHEADQUARTERSINCLOSECOLLABORATIONWITHTHEREGIONALOFlCES4HElRSTSTEPINTHEDEVELOPMENTOFTHE%PILEPSY!TLASWASTOIDENTIFYSPECIlCAREASWHEREINFORMATIONRELATEDTORESOURCESANDSERVICESFOREPILEPSYCAREWASLACKING)NORDERTOOBTAINTHISINFORMATIONAQUESTIONNAIREWASDRAFTEDIN%NGLISHINCONSULTATIONWITHAGROUPOF7(/AND),!%)"%CONSULTANTS!GLOSSARYOFTERMSUSEDINTHEQUESTIONNAIREWASALSOPREPAREDINORDERTOENSURETHATTHEQUESTIONSWEREUNDERSTOODINTHESAMEWAYBYDIFFERENTRESPONDENTS3UBSEQUENTLYTHEDRAFTQUESTIONNAIREANDGLOSSARYWEREREVIEWEDBYSELECTEDEXPERTS4HEQUESTIONNAIREWASPILOTEDINONEHIGHINCOMEANDONELOWINCOMECOUNTRYANDNECESSARYCHANGESWEREMADE4HEQUESTIONNAIREANDTHEGLOSSARYWERETHENTRANSLATEDINTOSOMEOFTHEOTHEROFlCIALLANGUAGESOF7(/n!RABIC&RENCH2USSIANAND3PANISH

    4HEQUESTIONNAIREANDGLOSSARYWERESENTTOTHEOFlCIALDELEGATESOFALLTHE#HAPTERSOF),!%)"%)NADDITION7(/REGIONALOFlCESWEREALSOASKEDTOIDENTIFYAKEYPERSONWORKINGINTHElELDOFEPILEPSYINTHOSECOUNTRIESWHERETHE),!%)"%LIAISONPERSONWASNOTAVAILABLEORNOTRESPONSIVE4HEKEYPERSONSWEREREQUESTEDTOCOMPLETETHEQUESTIONNAIREBASEDONALLPOSSIBLESOURCESOFINFORMATIONAVAILABLETOTHEM!LLRESPONDENTSWEREASKEDTOFOLLOWCLOSELYTHEGLOSSARYDElNITIONSINORDERTOMAINTAINUNIFORMITYANDCOMPARABILITYOFRECEIVEDINFORMATION4HE%PILEPSY!TLASPROJECTTEAMRESPONDEDTOQUESTIONSANDREQUESTSFORCLARIlCATION2EPEATREQUESTSWERESENTTOTHEKEYPERSONSINCASESWHERETHEREWASDELAYINPROCURINGTHECOMPLETEDQUESTIONNAIRE)NTHECASEOFINCOMPLETEORINTERNALLYINCONSISTENTINFORMATIONTHERESPONDENTSWERECONTACTEDTOPROVIDEFURTHERINFORMATIONORCLARIlCATIONWHEREAPPROPRIATEDOCUMENTSWEREREQUESTEDTOSUPPORTCOMPLETEDQUESTIONNAIRES

    2ECEIVEDDATAWEREENTEREDINTOANELECTRONICDATABASESYSTEMUSINGSUITABLECODESANDANALYSEDUSING3TATASPECIALEDITIONVERSIONSOFTWARE6ALUESFORCONTINUOUSVARIABLESWEREGROUPEDINTOCATEGORIESBASEDONDISTRIBUTION&REQUENCYDISTRIBUTIONSANDMEASURESOFCENTRALTENDENCYMEANMEDIANSANDSTANDARDDEVIATIONSWERECALCULATEDASAPPROPRIATE#OUNTRIESWEREGROUPEDINTOTHESIX7(/REGIONS!FRICATHE!MERICAS3OUTH%AST!SIA%UROPE%AST

    ERN-EDITERRANEANAND7ESTERN0ACIlCANDFOUR7ORLD"ANKINCOMECATEGORIESACCORDINGTOGROSSNATIONALINCOME'.)PERCAPITAACCORDINGTOTHE7ORLD"ANKLISTOFECONOMIES!PRIL4HE'.)GROUPSWEREASFOLLOWSLOWINCOME53ORLESSLOWERMIDDLEINCOME53nUPPERMIDDLEINCOME53nANDHIGHINCOME53ORMORE4HERESULTSOFTHEANALYSISAREPRESENTEDINTHE%PILEPSY!LTAS

    2EPRESENTATIVENESSOFDATACOLLECTED

    #OMPLETEDQUESTIONNAIRESWERERECEIVEDFROMVARIOUS7(/-EMBER3TATESAREASORTERRITORIES-EMBER3TATESOUTOFATOTALOFONE!SSOCIATE-EMBER4OKELAUANDFOURTERRITORIESWHICHAREHENCEFORTHREFERREDTOASCOUNTRIESFORTHESAKEOFCONVENIENCE&ROMTHE-EMBER3TATESDATAWEREAVAILABLEFROMCOUNTRIESINTHE!FRICAN2EGIONCOUNTRIESINTHE2EGIONOFTHE!MERICASCOUNTRIESINTHE3OUTH%AST!SIA2EGIONCOUNTRIESINTHE%UROPEAN2EGIONCOUNTRIESINTHE%ASTERN-EDITERRANEAN2EGIONANDCOUNTRIESINTHE7ESTERN0ACIlC2EGION)NTERMSOFPOPULATIONCOVEREDTHEDATAPERTAINTOOFTHEWORLDPOPULATIONOFTHEPOPULATIONIN!FRICAINTHE!MERICASIN3OUTH%AST!SIAIN%UROPEINTHE%ASTERN-EDITERRANEANANDINTHE7ESTERN0ACIlC

    ,IMITATIONSU4HEMOSTIMPORTANTLIMITATIONOFTHEDATASETISTHATONLYONEKEYPERSONINEACHCOUNTRYWASTHESOURCEOFALLINFORMATION!LTHOUGHTHERESPONDENTWASAN),!%)"%#HAPTEROFlCIALANDWASABLETOCONSULTOTHERLOCALPEOPLEWORKINGINTHEAREAOFEPILEPSYANDNUMEROUSSOURCESOFINFORMATIONTHERECEIVEDDATASHOULDSTILLBECONSIDEREDASTHEBESTESTIMATESBYTHERESPONDENTS)NSPITEOFTHISLIMITATIONTHE%PILEPSY!TLASISTHEMOSTCOMPREHENSIVECOMPILATIONOFRESOURCESFOREPILEPSYINTHEWORLDEVERATTEMPTED

    U"ECAUSETHESOURCESOFINFORMATIONINMOSTCOUNTRIESWERETHEKEYPERSONSWORKINGINTHElELDOFEPILEPSYTHEDATASETMAINLYCOVERSCOUNTRIESWHERETHEREAREEXPERTSOROTHERSWITHANINTERESTINEPILEPSY

    U#ERTAINQUESTIONSESPECIALLYINRELATIONTORESOURCESFOREPILEPSYCAREWEREFRAMEDINSUCHAWAYTHATRESPONSESCOULDBEhYESvORhNOv!LTHOUGHTHISFACILITATEDARAPIDGATHERINGOFINFORMATIONITFAILEDTOTAKEACCOUNTOFDIFFERENCESINCOVERAGEANDQUALITY2ESPONDENTSMAYHAVEREPLIEDPOSITIVELYTOTHEQUESTIONOFAVAILABILITYOFEPILEPSYSERVICESINTHECOUNTRYEVENIFONLYAVERYLIMITEDNUMBEROFSUCHFACILITIESWEREAVAILABLEINAFEWLARGECITIES!LSO

  • -%4(/$/,/'9

    THERESPONSEDOESNOTPROVIDEINFORMATIONABOUTDISTRIBUTIONACROSSRURALORURBANSETTINGSORACROSSDIFFERENTREGIONSWITHINTHECOUNTRY

    U7HILEATTEMPTSHAVEBEENMADETOOBTAINALLTHEREQUIREDINFORMATIONFROMALLCOUNTRIESINSOMECOUNTRIESITWASNOTAVAILABLE(ENCETHEDENOMINATORFORVARIOUSTHEMESISDIFFERENTANDTHISHASBEENINDICATEDWITHEACHTHEME4HEMOSTCOMMONREASONFORMISSINGDATAWASTHENONAVAILABILITYOFTHEINFORMATIONINTHECOUNTRY

    U4HEDATAREGARDINGNUMBEROFPEOPLEWITHEPILEPSYREPRESENTANESTIMATEANDHAVENOTBEENCOLLECTEDANDCALCULATEDUSINGSTRINGENTEPIDEMIOLOGICALRESEARCHMETHODSASFORPREVALENCESTUDIES

    U)TISPOSSIBLETHATDElNITIONSFORVARIOUSTERMSVARYFROMCOUNTRYTOCOUNTRY!SARESULTCOUNTRIESMAYHAVEHADDIFlCULTIESININTERPRETINGTHEDElNITIONSPROVIDEDINTHEGLOSSARY4HEDElNITIONSREGARDINGVARIOUSHUMANRESOURCESFOREXAMPLEMAYNEEDTOBEAMENDEDANDEXPANDEDINFUTURE

    U7HILEALLPOSSIBLEMEASURESHAVEBEENTAKENTOCOMPILECODEANDINTERPRETTHEINFORMATIONGIVENBYCOUNTRIESUSINGUNIFORMDElNITIONSANDCRITERIAITISPOSSIBLETHATSOMEERRORSMAYHAVEOCCURREDDURINGDATAHANDLING

    $ATAORGANIZATIONANDPRESENTATION

    4HEINFORMATIONINTHE%PILEPSY!TLASISPRESENTEDINFOURBROADSECTIONS4HEDATAINCLUDEDAREORGANIZEDINTHEMESANDAREPRESENTEDASGRAPHICSWORLDMAPSANDWRITTENTEXT"ARANDPIECHARTSAREPROVIDEDTOILLUSTRATEFREQUENCIESMEDIANSANDMEANSASAPPROPRIATE"ECAUSETHEDISTRIBUTIONOFMOSTOFTHEDATAISSKEWEDTHEMEDIANHASBEENUSEDTODEPICTTHECENTRALTENDENCYOFTHEVARIOUSVARIABLES4HETERMSUSEDINTHEPROCESSOFCOLLECTINGTHEDATAARECONTAINEDINTHE'LOSSARYPAGE)TWASNOTPOSSIBLETOPRESENTALLTHElNDINGSFROMTHEANALYSES4HERESULTSAREPRESENTEDASGLOBALREGIONALANDBYINCOMECATEGORIESWITHINEACHTHEME,IMITATIONSSPECIlCTOEACHTHEMEARETOBEKEPTINMINDWHENINTERPRETINGTHEDATAANDTHEIRANALYSES3ELECTEDIMPLICATIONSOFTHElNDINGSFORFURTHERDEVELOPMENTOFRESOURCESFOREPILEPSYCAREAREHIGHLIGHTEDWITHEACHTHEME4HE%PILEPSY!TLASALSOINCLUDESBRIEFREVIEWSOFSELECTEDTOPICSSUMMARIZINGTHEMEDICALLIFESTYLESOCIALANDECONOMICISSUESSURROUNDINGPEOPLEWITHEPILEPSY

  • %PILEPSYTHEDISORDER

    %0),%0394(%$)3/2$%2

  • 0ROF%DWARD(2EYNOLDS

    -),%34/.%3).4(%()34/29/&%0),%039

    )NTRODUCTION

    %PILEPSYISACOMMONMEDICALANDSOCIALDISORDERORGROUPOFDISORDERSWITHUNIQUECHARACTERISTICS%PILEPSYISUSUALLYDElNEDASATENDENCYTORECURRENTSEIZURES4HEWORDhEPILEPSYvISDERIVEDFROM,ATINAND'REEKWORDSFORhSEIZUREvORhTOSEIZEUPONv4HISIMPLIESTHATEPILEPSYISANANCIENTDISORDERINDEEDINALLCIVILIZATIONSITCANBETRACEDASFARBACKASMEDICALRECORDSEXIST)NFACTEPILEPSYISADISORDERTHATCANOCCURINALLMAMMALIANSPECIESPROBABLYMOREFREQUENTLYASBRAINSHAVEBECOMEMORECOMPLEX%PILEPSYISALSOREMARKABLYUNIFORMLYDISTRIBUTEDAROUNDTHEWORLD4HEREARENORACIALGEOGRAPHICALORSOCIALCLASSBOUNDARIES)TOCCURSINBOTHSEXESATALLAGESESPECIALLYINCHILDHOODADOLESCENCEANDINCREASINGLYINAGEINGPOPULATIONS

    4HEPERIODICCLINICALFEATURESOFSEIZURESAREOFTENDRAMATICANDALARMINGANDFREQUENTLYELICITFEARANDMISUNDERSTANDING4HISINTURNHASLEDTOPROFOUNDSOCIALCONSEQUENCESFORSUFFERERSWHICHHASGREATLYADDEDTOTHEBURDENOFTHISDISEASE)NANCIENTTIMESEPILEPTICATTACKSWERETHOUGHTTOBETHERESULTOFINVASIONANDPOSSESSIONOFTHEBODYBYSUPERNATURALFORCESUSUALLYMALIGNOREVILINmUENCESREQUIRINGEXORCISMINCANTATIONSOROTHERRELIGIOUSORSOCIALAPPROACHES4ODAYSEIZURESAREVIEWEDASELECTROMAGNETICDISCHARGESINTHEBRAININPREDISPOSEDINDIVIDUALSATTRIBUTABLEINPARTTOPUTATIVEGENETICFACTORSUNDERLYINGNEUROLOGICALDISORDERSANDLARGELYUNKNOWNNEUROCHEMICALMECHANISMS!WIDERANGEOFDIFFERENTSEIZURETYPESANDEPILEPSYSYNDROMESHAVEBEENIDENTIlED0ATIENTSARENOWTREATEDWITHPHARMACOTHERAPYOCCASIONALLYWITHNEUROSURGICALTECHNIQUESASWELLASWITHPSYCHOLOGICALANDSOCIALSUPPORT(OWHAVEWEARRIVEDATTHISTRANSFORMATIONINOURUNDERSTANDINGOFEPILEPSY7HATHAVEBEENTHEMILESTONESALONGTHEWAY

    !NCIENTDESCRIPTIONSANDCONCEPTS

    4HEEARLIESTDETAILEDACCOUNTOFEPILEPSYISINTHE"RITISH-USEUM,ONDON)TISPARTOFA"ABYLONIANTEXTONMEDICINE3AKIKKU;!LLDISEASES=WHICHWASWRITTENOVERYEARSAGOIEBEFORE"#)HAVEHADTHEPRIVILEGEOFWORKINGWITHA"ABYLONIANSCHOLAR*AMES+INNIER7ILSONONTHETRANSLATIONOFTHISTEXT&IGURE4HE"ABYLONIANSWEREKEENOBSERVERSOFCLINICALPHENOMENAANDPROVIDEREMARKABLEDESCRIPTIONSOFMANYOFTHESEIZURETYPESMIQTUTHATWERECOGNIZETODAYINCLUDINGWHATWEWOULDCALLTONICCLONICSEIZURESABSENCESDROPATTACKSSIMPLEANDCOMPLEXPARTIALSEIZURESANDEVENFOCALMOTOR*ACKSONIANORGELASTICATTACKS4HEYALSOUNDERSTOODSOMEASPECTSOFPROGNOSISINCLUDINGDEATHINSTATUSASWELLASPOSTICTALPHENOMENA4HE"ABYLONIANSHADNOCONCEPTOFPATHOLOGYHOWEVERANDEACHSEIZURETYPEWASASSOCIATEDWITHINVASIONOFTHEBODYBYAPARTICULARNAMEDEVILSPIRIT4HUSTREATMENTWASNOTMEDICALBUTSPIRITUAL

    4HISSUPERNATURALVIEWHASDOMINATEDTHINKINGABOUTEPILEPSYUNTILQUITERECENTLYANDEVENNOWREMAINSADEEPLYROOTEDNEGATIVESOCIALINmUENCEINSOMEPARTSOFTHEWORLD)TWASHOWEVERUNSUCCESSFULLYCHALLENGEDBYTHE3CHOOLOF(IPPOCRATESINTHCENTURY"#'REECEWHICHlRSTSUGGESTEDTHATTHEBRAINWASTHESEATOFTHISDISORDERASITWASTHEMEDIATORALSOOFTHEINTELLECTBEHAVIOURANDTHEEMOTIONS)NAFAMOUSTEXT(IPPOCRATESSTATEDh)DONOTBELIEVETHATTHE3ACRED$ISEASEISANYMOREDIVINETHANANYOTHERDISEASEBUTONTHECONTRARYHASSPECIlCCHARACTERISTICSANDADElNITECAUSE.EVERTHELESSBECAUSEITISCOMPLETELYDIFFERENTFROMOTHERDISEASESITHASBEENREGARDEDASADIVINEVISITATIONBYTHOSEWHOBEINGONLYHUMANVIEWITWITHIGNORANCEANDASTONISHMENT4HEBRAINISTHESEATOFTHISDISEASEASITISOFOTHERVERYVIOLENTDISEASESv)NTERESTINGLY(IPPOCRATESALSOHADSOMENOTIONTHATEPILEPSYCOULDBECOMECHRONICANDINTRACTABLEIFNOTTREATEDEARLYANDEFFECTIVELYALTHOUGHITISNOTCLEAREXACTLYWHATTREATMENTSHEHADINMINDh-OREOVERITCANBECUREDNOLESSTHANOTHERDISEASESSOLONGASITHASNOTBECOMEINVETERATEANDTOOPOWERFULFORTHEDRUGSWHICHAREGIVEN7HENTHEMALADYBECOMESCHRONICITBECOMESINCURABLEv

    5NFORTUNATELYTHE(IPPOCRATICCONCEPTOFATREATABLEBRAINDISORDERHADLITTLEINmUENCEONTHEPREVAILINGSUPERNATURALVIEWASISWELLDESCRIBEDINTHESCHOLARLYHISTORYOFEPILEPSYFROMTHE'REEKSTOTHELATETHCENTURYBY4EMKIN

    %PILEPSYASABRAINDISORDER

    )TWASNOTUNTILTHETHANDTHCENTURIESTHATTHE(IPPOCRATICCONCEPTOFEPILEPSYASABRAINDISORDERBEGANTOTAKEROOTIN%UROPEnILLUSTRATEDFOREXAMPLEBYANh%SSAYOFTHEPATHOLOGYOFTHEBRAINANDNERVOUSSTOCKINWHICHCONVULSIVEDISEASESARETREATEDOFvBY4HOMAS7ILLIS$URINGTHESETWOCENTURIESEPILEPSYWASONEOFSEVERALKEYAREASOFDEBATEINTHEGRADUALIDENTIlCATIONANDSEPARATIONOFhNERVOUSDISORDERSvFROMhMENTALDISORDERSvWHICHLEDTOTHEBEGINNINGSOFMODERNNEUROLOGYINTHETHCENTURY!MAJORISSUEWASWHATTOINCLUDEWITHINTHECONCEPTOFEPILEPSYIEALLPERIODIChCONVULSIVEDISEASESvORONLYTHOSEWITHARATHERRESTRICTEDKINDOFMOTORCONVULSIONWITHORWITHOUTLOSSOFCONSCIOUSNESS4HUSMANYTREATISESONCONVULSIVEDISEASESAPPEAREDWHICHINCLUDEDHYSTERIATETANUSTREMORSRIGORSANDOTHERPAROXYSMALMOVEMENTDISORDERS4HELATTERWEREGRADUALLYSEPARATEDOFFFROMEPILEPSYINTHETHCENTURYASILLUSTRATEDINTHEDISTINGUISHED,UMLEIAN,ECTURESONCONVULSIVEDISEASESBY2OBERT"ENTLEY4ODDINAND*ACKSONIN

    7ITHTHEDEVELOPMENTOFNEUROPATHOLOGYASANEWDISCIPLINEINTHETHCENTURYTHEREALSOBEGANAGREATDEBATEWHICHISSTILLWITHUSTOSOMEEXTENTASTOTHEDISTINCTIONBETWEENPUREPRIMARYIDIOPATHICEPILEPSYINWHICHTHEBRAINISMACROSCOPICALLYNORMALFROMSECONDARYSYMPTOMATICEPILEPSYASSOCIATEDWITHMANYDIFFERENTBRAINPATHOLOGIES

  • -),%34/.%3).4(%()34/29/&%0),%039

    !LSOINTHETHCENTURYWITHTHEDEVELOPMENTOFTHECONCEPTOFFUNCTIONALLOCALIZATIONINTHEBRAINANDTHEDISCOVERYFOREXAMPLEOFTHEMOTORCORTEXTHECONCEPTOFhEPILEPTIFORMvORhPARTIALvSEIZURESAROSEASMODELSFORTHESTUDYOFhGENERALIZEDvSEIZURES"YMETICULOUSLYSTUDYINGTHECLINICALFEATURESOFUNILATERALEPILEPTIFORMMOTORSEIZURES*ACKSONWASABLETOCONCLUDEASWASLATERCONlRMEDEXPERIMENTALLYTHATTHEMOTORCORTEXWASCONCERNEDWITHMOVEMENTSRATHERTHANINDIVIDUALMUSCLES0AROXYSMALEPISODESOFANINTELLECTUALEMOTIONALORBEHAVIOURALKINDINCLUDINGHYSTERIAORhHYSTEROEPILEPSYvWEREMOREDIFlCULTTOCLASSIFYANDLOCALIZEITWASNOTUNTILTHEDISCOVERYOFHUMANELECTROENCEPHALOGRAPHY%%'INTHETHCENTURYTHATTHECONCEPTSOFTEMPORALLOBEORFRONTALEPILEPSYWEREGRADUALLYCLARIlEDANDPSYCHOLOGICALCONCEPTSOFHYSTERIAEVOLVED

    %LECTRICALBASISOFEPILEPSY

    !STHECONCEPTOFABRAINDISORDERGRADUALLYTOOKHOLDBETWEENTHETHANDTHCENTURIESITWASWIDELYBELIEVEDTHATEPILEPSYMUSTHAVEAVASCULARBASISATTRIBUTABLETOEITHERACUTEANAEMIAORACUTECONGESTIONOFTHEBRAIN4HISVIEWWASCHALLENGEDBY4ODDWHOWASTHElRSTTODEVELOPANELECTRICALTHEORYOFBRAINFUNCTIONANDOFEPILEPSYINHIS,UMLEIAN,ECTURESOF4ODDWASANANATOMISTPHYSIOLOGISTANDPATHOLOGISTASWELLASANOUTSTANDINGPHYSICIANWITHANINTERESTINDISORDERSOFTHENERVOUSSYSTEM(EWASAWAREOFTHEGREATNEWDISCOVERIESINELECTROMAGNETISMTHROUGHHISCONTACTWITHHISCONTEMPORARYIN,ONDON-ICHAEL&ARADAYTHEGREATESTELECTRICALSCIENTISTOFALLTIME)NmUENCEDBY&ARADAY4ODDCONCEIVEDOFhNERVOUSFORCEvASAPOLARFORCEANALOGOUSTOELECTRICITYBUTMEDIATEDBYUNKNOWNMOLECULARORNUTRITIONALMECHANISMS(ETHEREFOREPREFERREDTHETERMhNERVOUSPOLARITYv!PPLYING&ARADAYSCONCEPTOFhDISRUPTIVEDISCHARGEvHEVIEWEDSEIZURESASTHERESULTOFELECTRICALDISCHARGESINTHEBRAINWHICHHECONlRMEDEXPERIMENTALLYINTHERABBITUSING&ARADAYSRECENTLYDISCOVEREDMAGNETOELECTRICROTATIONMACHINE

    )TISOFTENTAUGHTTHAT*ACKSONWASTHElRSTTODEVELOPANELECTRICALTHEORYOFEPILEPSYWITHHISFAMOUSSTATEMENTTHATh%PILEPSYISTHENAMEFOROCCASIONALSUDDENEXCESSIVERAPIDANDLOCALDISCHARGESOFGREYMATTERv)TISDIFlCULTTOUNDERSTANDWHYINHIS,UMLEIAN,ECTURESOF*ACKSONDIDNOTACKNOWLEDGE4ODDSLECTURESONTHESAMESUBJECTYEARSEARLIER(OWEVERITISAPPARENTTHATTHE*ACKSONTHEORYWASNOTANELECTRICALONE!S'OWERSMAKESCLEAR*ACKSONSCONCEPTOFDISCHARGEWASAVAGUEONEOFADISCHARGEOFENERGYASFOREXAMPLEINABENTPINORSPRING*ACKSONSUPPOSEDTHEhLIBERATIONOFENERGYDURINGRAPIDDECOMPOSITIONKATABOLISMOFSOMEMATTERINORPARTOFTHOSECELLSv

    !SAPHILOSOPHERPHYSICIANITISDOUBTFULIF*ACKSONHADANYSIGNIlCANTGRASPOFELECTROMAGNETISMINANERABEFORETHE

    DISCOVERYOFTHEHUMAN%%')NFACTITWASONLYABOUTTHISTIMETHAT#ATONlRSTDISCOVEREDTHE%%'INRABBITSCATSANDMONKEYS"UTITWASNOTUNTILYEARSLATERINTHAT"ERGERREPORTEDTHEDISCOVERYOFTHEHUMAN%%'4HISLEDRAPIDLYTOTHECONlRMATIONTHATSEIZURESWERETHERESULTOFELECTRICALDISCHARGESINTHEBRAINFOREXAMPLEBY,ENNOXATTHE.EUROLOGICAL#ONGRESSIN,ONDONWHEREHEALSOlNALLYLAIDTORESTTHESTILLWIDELYBELIEVEDVASCULARTHEORIESOFEPILEPSY

    )N(ODGKIN(UXLEYMADETHE.OBEL0RIZEWINNINGDISCOVERIESOFTHEIONICBASISOF4ODDSNERVOUSPOLARITYFORCE)NTERESTINGLYITWAS&ARADAYSMENTORATTHE2OYAL)NSTITUTIONIN,ONDON3IR(UMPHRY$AVYWHODISCOVEREDSODIUMPOTASSIUMCHLORINECALCIUMANDMAGNESIUMAMONGOTHERELEMENTS

    4HEMODERNERA

    )TISPREMATURETOASSESSRECENTDEVELOPMENTSINHISTORICALTERMSBUTINTHESECONDHALFOFTHETHCENTURYREMARKABLEPROGRESSWASMADEINDIAGNOSTICFACILITIESANDPOSSIBILITIESTHROUGHSTRUCTURALANDFUNCTIONALNEUROIMAGINGINCLUDING#!4AND-2)ASWELLASINVIDEOTELEMETRYANDMAGNETOENCEPHALOGRAPHY

    4HEMODERNERAOFPHARMACOTHERAPYPROBABLYBEGANWITHBROMIDESPHENOBARBITALnSTILLTHEMOSTWIDELYUSEDDRUGINTHEWORLDnANDPHENYTOIN)NRECENTDECADESTHEREHASBEENAPROLIFERATIONOFNEWDRUGSINTHEDEVELOPEDWORLDFOREXAMPLENINEINTHE5NITED+INGDOMINTHELASTYEARS4OWHATEXTENTNEWERDRUGSAREMOREORLESSEFFECTIVESELECTIVEORTOXICTHANOLDERDRUGSISSTILLAMATTEROFDEBATEANDEVALUATIONASISTHEROLEOFPOLYTHERAPYINTHEEVENTOFFAILUREOFCAREFULLYMONITOREDMONOTHERAPY4HEMECHANISMSOFACTIONOFTHEDRUGSARELARGELYUNKNOWNANDITISUNCERTAINWHETHERTHEDRUGSMERELYSUPPRESSSEIZURESORINmUENCELONGERTERMPROGNOSISTHROUGHhARRESTINGvEPILEPSYOROTHERANTIEPILEPTICMECHANISMS

    4HEFUNCTIONALLOCALIZATIONDETECTEDBYSTUDYINGFOCALORPARTIALSEIZURESPLAYEDAKEYROLEINDEVELOPINGNEUROSURGERYINTHELATETHCENTURYASDIDTHEDEVELOPMENTOFTHE%%'INTHElRSTHALFOFTHETHCENTURY4HEMODERNINTERESTINNEUROSURGERYFOREPILEPSYITSELFESPECIALLYINTRACTABLESEIZURESASSOCIATEDWITHFOCALCORTICALLESIONSINCLUDINGTEMPORALLOBEEPILEPSYWASPIONEEREDBY(ORSLEY0ENlELDAND&ALCONERAMONGOTHERS

    4HEMODERNERAISALSOMARKEDBYANEXPANSIONOFINTERESTINBASICMECHANISMSUNDERLYINGSEIZURESANDEPILEPSIESSTIMULATEDBYDEVELOPMENTSINGENETICSMOLECULARBIOLOGYNEUROPHYSIOLOGYFUNCTIONALIMAGINGANDNUMEROUSNEUROCHEMICALTECHNIQUESFOREXPLORINGTHECONCEPTSOFEXCITATIONINHIBITIONMODULATIONNEUROTRANSMISSIONANDSYNCHRONIZATION%VERYADVANCESEEMSTOADDTOTHEENOR

  • MOUSCOMPLEXITYOFTHENERVOUSSYSTEMANDTHEPROBABILITYTHATMULTIPLEELUSIVEGENETICnMOLECULARnMETABOLICMECHANISMSCONTRIBUTETOTHEWIDERANGEOFEPILEPSIES

    0UBLICHEALTHANDSOCIALDEVELOPMENTS

    $ESPITESCIENTIlCADVANCESINTHETHCENTURYEPILEPSYREMAINEDAPROFOUNDSOCIALPROBLEMCOMPOUNDEDBYDEEPLYROOTEDHISTORICALCONCEPTSOFASUPERNATURALORSACREDDISORDER7IDESPREADIGNORANCEFEARMISUNDERSTANDINGANDSTIGMACONTRIBUTEDTOSEVERELEGALANDSOCIALPENALTIES

    )N"UDAPESTINAGROUPOF%UROPEANPHYSICIANSFOUNDEDTHE)NTERNATIONAL,EAGUE!GAINST%PILEPSY),!%&ROMTHEBEGINNING),!%WASCONCERNEDWITHBOTHTHESCIENTIlCANDSOCIALASPECTSOFEPILEPSYANDWITHEDUCATIONTHROUGHINTERNATIONALCOLLABORATIONCONGRESSESANDITSJOURNAL%PILEPSIA5NFORTUNATELYTHEOUTBREAKOFTHE&IRST7ORLD7ARLEDTOTHEDEMISEOF),!%FORYEARSFROMTOWHENITWASREBORNANDRECONSTITUTEDATTHE3ECOND)NTERNATIONAL.EUROLOGICAL#ONGRESSIN,ONDON!PARTFROMABRIEFINTERRUPTIONDURINGTHE3ECOND7ORLD7ARTHE,EAGUEHASGROWNSTEADILYINTOATRULYINTERNATIONALORGANIZATION

    "YITWASFELTTHATTHESOCIALDIMENSIONOFEPILEPSYREQUIREDANORGANIZATIONOFITSOWNINVOLVINGPATIENTSANDPUBLICANDTHE)NTERNATIONAL"UREAUFOR%PILEPSY)"%WASFOUNDED"YTHEENDOFTHETHCENTURY),!%HADOVER#HAPTERSAND)"%OVERFULLMEMBERSANDASSOCIATEMEMBERSCOVERINGEVERYCONTINENT2EGIONALSTRUCTURESFORBOTHORGANIZATIONSARENOWEVOLVING)NTHELASTYEARS),!%HASPLAYEDAKEYROLEINDElNINGANDCLASSIFYING

    SEIZURESANDEPILEPSYSYNDROMESTHROUGHITS)NTERNATIONAL#OMMISSIONON4ERMINOLOGYAND#LASSIlCATION

    !FTERSOMEINITIALTENSIONSINTHELATESANDEARLYSINCLUDINGAMERGERTHENSEPARATION),!%AND)"%HAVEWORKEDVERYWELLTOGETHERWITHINTERLOCKINGEXECUTIVECOMMITTEES4HEYAREBOTHNONGOVERNMENTALORGANIZATIONSAFlLIATEDTO7(/$URINGMYPRESIDENCYOF),!%n)PROPOSEDAMAJORNEWINITIATIVETOADDRESSTHEPUBLICHEALTHASPECTSOFEPILEPSYINCLUDINGSOCIALASPECTSINVOLVINGAPARTNERSHIPBETWEENTHE,EAGUEPROFESSIONALTHE"UREAUPATIENTSPUBLICAND7(/POLITICAL4HE),!%)"%7(/'LOBAL#AMPAIGN!GAINST%PILEPSYWASLAUNCHEDFROM'ENEVAAND$UBLININTHESUMMEROF)TSOBJECTIVESINCLUDERAISINGPOLITICALANDPUBLICAWARENESSOFEPILEPSYREDUCINGSTIGMAANDMISUNDERSTANDINGIMPROVINGEDUCATIONANDESPECIALLYTHEDELIVERYOFSERVICESTREATMENTANDCARETOMILLIONSOFPEOPLEWITHEPILEPSYMAINLYINDEVELOPINGCOUNTRIESWHERESTUDIESHAVESHOWNTHATBETWEENANDOFPATIENTSHAVENOACCESSTOMODERNTREATMENTTHESOCALLEDhTREATMENTGAPvDESPITETHEAVAILABILITYOFRELATIVELYCHEAPMEDICATION

    &OLLOWINGTHElRSTPHASEOFPOLITICALANDPUBLICAWARENESSRAISINGnTHETHEN$IRECTOR'ENERALOF7(/$R'RO(ARLEM"RUNDTLANDLAUNCHEDTHESECONDPHASEOFTHE#AMPAIGNFROM'ENEVAANDRAISEDITSSTATUSTOTHEHIGHESTLEVELWITHIN7(/THElRSTNEUROLOGICALDISORDERTOBEACCORDEDTHISPRIORITY$EMONSTRATION0ROJECTSARENOWUNDERWAYINSEVERALDEVELOPINGCOUNTRIESINCLUDINGIN!FRICAAND#HINAANDATHIRDPHASEOFTHE#AMPAIGNISBEINGPLANNED

    -),%34/.%3).4(%()34/29/&%0),%039

  • -),%34/.%3).4(%()34/29/&%0),%039

    "

    !

    "

  • .5-"%2/&0%/0,%7)4(%0),%039

    )NTRODUCTIONU+NOWLEDGEABOUTTHENUMBEROFPEOPLEWITHEPILEPSYISESSENTIALFORTHEIDENTIlCATIONOFNEEDSANDTHEPLANNINGOFAPPROPRIATESERVICES

    3ALIENTlNDINGSU!TOTALOFABOUTPEOPLEWITHEPILEPSYAREREPORTEDFROMCOUNTRIESCOVERINGOFTHEWORLDPOPULATION

    U4HEMEANNUMBEROFPEOPLEWITHEPILEPSYPERPOPULATIONIS3$MEDIANFROMRESPONDINGCOUNTRIES

    U4HEMEANNUMBEROFPEOPLEWITHEPILEPSYPERPOPULATIONVARIESACROSSREGION7HILEITISANDINTHE!MERICASAND!FRICARESPECTIVELYITISIN3OUTH%AST!SIAINTHE%ASTERN-EDITERRANEANIN%UROPEANDINTHE7ESTERN0ACIlC

    U4HEMEANNUMBEROFPEOPLEWITHEPILEPSYPERPOPULATIONRANGESFROMINTHEHIGHINCOMECOUNTRIESTOINTHELOWINCOMECOUNTRIES

    ,IMITATIONSU4HEDATAREGARDINGTHENUMBEROFPEOPLEWITHEPILEPSYWERENOTCOLLECTEDUSINGSTRINGENTRESEARCHMETHODSASFOREPIDEMIOLOGICALSTUDIESSUCHMETHODSARECOSTLYANDARENOTEASYTOCARRYOUT

    U4HESOURCESOFINFORMATIONVARYACROSSRESPONDINGCOUNTRIESLIMITINGTHEINTERPRETATIONOFTHEDATASET&OREXAMPLESOMERESPONDENTSPROVIDEDlGURESBASEDONGENERICPREVALENCEORlNDINGSFROMONEPARTICULARAREAOFTHECOUNTRYORONTHENUMBEROFPEOPLEELIGIBLEFORANTIEPILEPTICDRUGS/NEOFTHEREASONSFORLOWPREVALENCEREPORTEDFROMTHE7ESTERN0ACIlCCOULDBETHELOWER

    PREVALENCERATESREPORTEDFROM0ACIlC)SLANDSITALSOPUTSABIASONTHEGLOBALOUTCOMEASTHE7ESTERN0ACIlCCOMPRISESOFTHEPOPULATIONINALL7(/REGIONS

    U)NFORMATIONREGARDINGTHENUMBEROFPEOPLEWITHACTIVEEPILEPSYWASNOTOBTAINED

    U)NFORMATIONREGARDINGTHENUMBEROFPEOPLEWITHEPILEPSYAMONGSPECIALGROUPSEGCHILDRENWASNOTOBTAINED

    #ONCLUSIONSU4HENUMBEROFPEOPLEWITHEPILEPSYISHIGHINMOSTREGIONSOFTHEWORLDTHUSCONSTITUTINGEPILEPSYASAMAJORPUBLICHEALTHCONCERN

    U4HEREISANEEDTOCARRYOUTMULTINATIONALEPIDEMIOLOGICALSTUDIESUSINGSTANDARDIZEDDElNITIONSANDCASEASCERTAINMENTMETHODS

    U3TUDIESOFTHEBURDENOFEPILEPSYSHOULDRAISETHEAWARENESSOFAUTHORITIESABOUTTHEIMPACTOFEPILEPSYONTHECOUNTRY

  • !

    !

    '-

    '-)%

    #$

    #!")%#

    $

    #!"

    !

    )#

    %)#

    *

    ',+"

    *+

    *#

    ,)'(

    *+)&

    #+))

    &&

    *+

    )

    #

    ')$

    .5-"%2/&0%/0,%7)4(%0),%039

    4HESENUMBERSAREONLYINDICATIVEBASEDONTHEINFORMATIONPROVIDEDBY!TLASRESPONDENTS4HENUMBERSHAVENOTBEENCORRECTEDFORNONRESPONDINGCOUNTRIES

  • 0ROF.ADIR%"HARUCHA

    %0)$%-)/,/'9

    7HATISNEUROEPIDEMIOLOGY

    .EUROEPIDEMIOLOGYISTHESTUDYOFTHEDISTRIBUTIONANDDETERMINANTSOFNEUROLOGICALDISEASESINHUMANPOPULATIONS7HILETHECLINICIANISCONCERNEDWITHDISEASEINTHEINDIVIDUALPATIENTTHEEPIDEMIOLOGISTISCONCERNEDWITHTHEOCCURRENCEOFDISEASEWITHINACOMMUNITY%PIDEMIOLOGICALINFORMATIONBENElTSHEALTHPOLICYMAKERSPUBLICHEALTHOFlCIALSMEDICALPRACTITIONERSANDPATIENTSTHEPHARMACEUTICALINDUSTRYANDOTHEREPIDEMIOLOGISTS

    $IAGNOSIS

    !CCURACYOFMEDICALDIAGNOSISISFUNDAMENTAL$IAGNOSISISCLINICALANDSHOULDBECONlRMEDBYAPROFESSIONALWITHEXPERTISEINEPILEPSY%%'MAYHELPDIAGNOSISBUTISCERTAINLYNEEDEDTOCLASSIFYSEIZURETYPEANDGIVEAMEANINGFULPROGNOSIS-OSTEPIDEMIOLOGICALSTUDIESTODATEHAVELACKEDINVESTIGATORYFACILITIESINTHElELDESPECIALLYINDEVELOPINGCOUNTRIES

    3TUDYINGEPILEPSYISBESETWITHDIFlCULTIES!CCURATEDIAGNOSISANDCASEASCERTAINMENTREMAINMAJORPROBLEMSBECAUSEEPILEPSYISONLYASYMPTOMOFMANYDISPARATECAUSATIVEENTITIES#ONlDENTDIAGNOSISOREXCLUSIONINALLCASESOFSEIZURESISDIFlCULTBECAUSESEIZURETYPESVARYUNUSUALBEHAVIOURANDBLANKSPELLSMAYNOTBERECOGNIZEDASSEIZURESTHEREMAYBENOACCOMPANYINGNEUROLOGICALSIGNSANDIFANEYEWITNESSACCOUNTISLACKINGTHEDIAGNOSISMAYNOTBEMADEATALL/THERCONDITIONSAREREADILYCONFUSEDWITHEPILEPTICSEIZURES4HEMOSTFREQUENTLYOCCURRINGNONEPILEPTICEVENTSREQUIRINGDISTINCTIONANDEXCLUSIONAREPSEUDOSEIZURESANDSYNCOPE

    $ElNITIONOFSEIZURESANDEPILEPSIES

    4OENSURECOMPARABILITYOFEPIDEMIOLOGICALSTUDIES),!%SGUIDELINESFOREPIDEMIOLOGICALSTUDIESONEPILEPSYSHOULDBEFOLLOWED4HETERMEPILEPSYSHOULDBEUSEDONLYFORRECURRENTUNPROVOKEDSEIZURES

    3EIZURESARECATEGORIZEDASPARTIALORGENERALIZED!PARTIALSEIZUREISPRESUMEDTOSTARTINAPARTOFTHEBRAINANDMAYORMAYNOTSPREAD4HECAUSEMUSTALWAYSBESOUGHTANDEPILEPSIESMAYBECLASSIlEDACCORDINGTOAETIOLOGYANDTYPEOFSEIZUREASFOLLOWS

    U!ETIOLOGYREMOTESYMPTOMATICOFKNOWNAETIOLOGYCRYPTOGENICPROBABLYSYMPTOMATICBUTUNKNOWNAETIOLOGYIDIOPATHICPRESUMEDGENETIC

    U4YPEOFSEIZUREIFPARTIALTHEEPILEPSYISLOCALIZATIONRELATEDANDIFGENERALIZEDTHEEPILEPSYISEITHERGENERALIZEDORLOCALIZATIONRELATEDGENERALIZEDSEIZURESCANOCCURINBOTHGENERALIZEDANDLOCALIZATIONRELATEDEPILEPSIES

    !CUTESYMPTOMATICSEIZURESARETHOSEOCCURRINGINCLOSETEMPORALASSOCIATIONWITHANACUTESYSTEMICMETABOLICORTOXICINSULTORINASSOCIATIONWITHANACUTECENTRALNERVOUSSYSTEMINSULT!CUTESYMPTOMATICSEIZURESTHOUGH

    SOMETIMESLIFETHREATENINGANDVERYCOMMONARENOTCONSIDEREDEPILEPSY4HEYDOHOWEVERINCREASETHERISKOFFUTUREEPILEPSY&EBRILESEIZURESAREATYPEOFACUTESYMPTOMATICSEIZUREANDTHECOMMONESTSEIZUREDISORDERINCHILDREN

    0ROGRESSIVESYMPTOMATICSEIZURESAREUNPROVOKEDSEIZURESOWINGTOPROGRESSIVECENTRALNERVOUSSYSTEMDISORDERS4HEPROGNOSISISWORSE4HELASTGROUPISTHEUNDETERMINEDANDUNCLASSIlABLEEPILEPSIES%PIDEMIOLOGICALSTUDIESOFTENWRONGLYOMITTHISGROUPALTOGETHER

    &AILURETOSEPARATEACTIVEFROMINACTIVEEPILEPSYCAUSESDIFFERENCESINRATES!PERSONWITHACTIVEEPILEPSYHASHADATLEASTONEEPILEPTICSEIZUREWITHINTHEPREVIOUSlVEYEARSREGARDLESSOFANTIEPILEPTICDRUG!%$TREATMENT)NGENERALPATIENTSWITHINACTIVEEPILEPSYDONOTNEEDCONTINUINGTREATMENT

    )NCIDENCEANDPREVALENCE

    4HEINCIDENCETHENUMBEROFNEWCASESPERYEAROFEPILEPSYISnPERPOPULATIONINDEVELOPEDCOUNTRIES4HEREAREFEWINCIDENCESTUDIESINDEVELOPINGCOUNTRIESNONEOFWHICHISPROSPECTIVETHEYSHOWRATESFROMTOPERPOPULATION(IGHERINCIDENCERATESINDEVELOPINGCOUNTRIESTHOUGHTTOBEATTRIBUTABLETOPARASITOSISPARTICULARLYNEUROCYSTICERCOSIS()6TRAUMAPERINATALMORBIDITYANDCONSANGUINITYAREDIFlCULTTOINTERPRETBECAUSEOFMETHODOLOGICALISSUESPARTICULARLYTHELACKOFAGEADJUSTMENTWHICHISIMPORTANTBECAUSEEPILEPSYHASABIMODALPEAKWITHAGE)NCIDENCERATESWORLDWIDEAREGREATERINMENTHANWOMEN)NDEVELOPEDCOUNTRIESINCIDENCEAMONGTHEELDERLYISRISINGANDAMONGCHILDRENITISFALLING4HISISRELEVANTTODEVELOPINGCOUNTRIESASLONGEVITYRISESANDRISKOFCEREBROVASCULARDISEASEINCREASES#ONVERSELYBETTEROBSTETRICCAREANDINFECTIONCONTROLCANDIMINISHINCIDENCEINCHILDREN

    4HEPREVALENCETHETOTALNUMBEROFCASESATAPARTICULARPOINTINTIMEOFACTIVEEPILEPSYINALARGENUMBEROFSTUDIESHASBEENSHOWNTOBEFAIRLYUNIFORMATnPERPOPULATION(IGHERPREVALENCESINSUB3AHARAN!FRICAAND#ENTRALAND3OUTH!MERICAHAVEBEENREPORTEDPOSSIBLYDUETOMETHODOLOGICALDIFFERENCESCONSANGUINITYORENVIRONMENTALFACTORSANDPARTICULARLYSOINRURALAREAS)TISDIFlCULTTOTEASEOUTRACIALANDSOCIOECONOMICFACTORS0REVALENCEDATAAREPRIMARILYUSEDBYHEALTHPLANNERSANDFORGENERATINGAETIOLOGICALHYPOTHESES

    !ETIOLOGY

    0OPULATIONBASEDPREVALENCEANDINCIDENCESURVEYSPRESENTPERCENTAGEFREQUENCIESOFPRESUMEDAETIOLOGIESOFEPILEPSY)NMOSTNOCAUSEISFOUND0RECISEDIAGNOSISREMAINSDIFlCULTnEVENINTHESTUDYIN2OCHESTER-.TWOTHIRDSOFCASESWERECLASSIlEDASIDIOPATHICORCRYPTOGENIC!ETIOLOGYOFEPILEPSYISDISCUSSEDIN3ECTION

  • %0)$%-)/,/'9

    3EIZURETYPEANDEPILEPSYSYNDROME

    'ENERALIZEDSEIZURESARECOMMONINlELDSTUDIESESPECIALLYINDEVELOPINGCOUNTRIESOFTENBECAUSEPARTIALSEIZURESAREMISSED)NDEVELOPEDCOUNTRIESOVERHALFTHEINCIDENCECASESAREPARTIAL0ARTIALANDGENERALIZEDSEIZURESVARYWITHAGEPARTIALSEIZURESBEINGMORECOMMONINTHEVERYYOUNGANDINELDERLYPEOPLE'ENERALIZEDTONICnCLONICSEIZURESOCCURUNIFORMLYTHROUGHOUTTHELIFECOURSEABSENCESEIZURESOCCURMAXIMALLYBETWEENANDYEARSOFAGEANDMYOCLONICSEIZURESINTHEUNDERlVEYEAROLDSANDAROUNDYEARS)DIOPATHICEPILEPSYISUSUALLYSEENINTHEYOUNGANDREMOTESYMPTOMATICEPILEPSYATTHEEXTREMES)NDEVELOPINGCOUNTRIESHOWEVERSYMPTOMATICEPILEPSYCAUSEDBYINFECTIONSSHOULDBECONSIDEREDATANYAGE

    $IAGNOSISBYSYNDROMEISIMPORTANTFORPROGNOSISANDTREATMENT&OREXAMPLEACRYPTOGENICSYMPTOMATICLOCALIZATIONSYNDROMETHECOMMONESTPAEDIATRICSYNDROMEISLIKELYTOBECAUSEDBYABRAINLESIONWHICHMAYBEAMENABLETOSURGERYIFSEIZURESAREMEDICALLYUNCONTROLLABLE#HILDHOODABSENCEEPILEPSYTHECOMMONESTIDIOPATHICGENERALIZEDEPILEPSYWHOSEPROGNOSISISPOORIFUNTREATEDANDEXCELLENTIFTREATEDMAYBEMISSEDALTOGETHERINPOPULATIONSCREENING

    'ENETICSTUDIES

    'ENETICSTUDIESHAVEIDENTIlEDRAREEPILEPSYSYNDROMESATTRIBUTABLETOSINGLEGENEMUTATIONSANDSIMPLE-ENDELIANINHERITANCE-OSTIDIOPATHICEPILEPSYSYNDROMESHAVECOMPLEXINHERITANCEPROBABLYBECAUSEOFINTERACTINGGENETICANDENVIRONMENTALFACTORS4HECATEGORYOFCRYPTOGENICEPILEPSIESISDIMINISHINGASRESULTSOFGENETICANDNEUROIMAGINGSTUDIESBECOMEAVAILABLE4HEREISSCOPEFORDEVELOPINGANDDEVELOPEDCOUNTRIESTOCOLLABORATEINPROPERLYDESIGNEDINCIDENCEANDGENETICSTUDIESOFDIFFERENTEPILEPSYSYNDROMES'ENETICEPIDEMIOLOGICALSTUDIESWILLGIVEINFORMATIONONINDIVIDUALPROGNOSISANDRISKTOOTHERFAMILYMEMBERS7HENPATHOPHYSIOLOGICALMECHANISMSARECLEARERTAILORINGTHEDRUGTOTHEGENEWILLALSOBECOMEPOSSIBLE

    0ROGNOSIS

    /NEINTHREEPEOPLEWITHASINGLEUNPROVOKEDSEIZUREWILLHAVEASECONDSEIZUREOVERTHENEXTlVEYEARS4REATMENTSHOULDBECONSIDEREDONLYTOPREVENTRECURRENCENOTTOPREVENTEPILEPSY5NTREATEDAFTERASECONDSEIZUREWILLHAVEANOTHERSEIZUREWITHINTHENEXTONEORTWOYEARS7HETHERhSEIZURESBEGETSEIZURESvISUNCLEAR.UMEROUSPREDICTORSFORRECURRENCECONTROLREMISSIONANDINTRACTABILITYHAVEBEENDEVELOPEDATTHEONSETANDDURINGTREATMENT-OSTIMPORTANTAREDIAGNOSISBYSYNDROMEANDRESPONSETOTHElRSTAPPROPRIATELYPRESCRIBEDANDTAKEN!%$0ERSISTENCEOFSEIZURESAFTERTWO!%$SREQUIRESPRESURGICALEVALUATIONASCHANCESOFREMISSIONARELESSTHANWITHATHIRD!%$ANDnFOLLOWINGSUCCESSFULSURGERY

    -ORTALITY

    )NDEVELOPEDCOUNTRIESMORTALITYMEASUREDBYTHESTANDARDIZEDMORTALITYRATIO3-2ISnTIMESTHATOFTHEGENERALPOPULATION$EATHSMAYBEATTRIBUTABLEEITHERTOTHECAUSEOFEPILEPSYWHENDEATHWILLOCCURSOONAFTERONSETORTOTHEEPILEPSYITSELFASINCHRONICEPILEPSYORITMAYBEUNRELATED#OMPARISONBETWEENSTUDIESISDIFlCULTBECAUSEOFDIFFERENTSTUDYDESIGNSANDDIFFERENTPOPULATIONSSTUDIED3YMPTOMATICEPILEPSYHASAHIGHERMORTALITYRATIOTHANIDIOPATHICEPILEPSY4HEIMPORTANTEPILEPSYRELATEDDEATHSARESUDDENUNEXPECTEDUNEXPLAINEDDEATHINEPILEPSY35$%0nOFALLDEATHSINEPILEPSYDEATHINSTATUSEPILEPTICUSANDSUICIDEn)NSTATUSEPILEPTICUSTHEMORTALITYDEPENDSONTHECAUSEANDISHIGHERINELDERLYSYMPTOMATICPATIENTS2ISKOFSUICIDEISGREATESTWHENEPILEPSYSTARTSINADOLESCENTSWITHAHISTORYOFASSOCIATEDPSYCHIATRICDISTURBANCE"OTHDEVELOPINGANDDEVELOPEDCOUNTRIESNEEDPROSPECTIVEINCIDENCECOHORTSTUDIESWITHLONGTERMFOLLOWUP

    -ORBIDITY

    3OMEPSYCHIATRICANDPHYSICALCONDITIONSAREMORECOMMONINPEOPLEWITHEPILEPSY#EREBROVASCULARDISEASEANDBRAINTUMOURSMAYBECAUSALLYRELATEDTOEPILEPSY(EADINJURYANDPSYCHIATRICCONDITIONSMAYBECAUSEDBYORRESULTFROMEPILEPSY!%$TERATOGENICMORBIDITYNEEDSFURTHERSTUDY!LERTHEALTHPROVIDERSMUSTBEAWAREOFALLTHESEISSUESINORDERTOIMPROVETHEQUALITYOFLIFEOFSPECIALGROUPSSUCHASWOMENANDCHILDREN

    )NTERVENTIONALEPIDEMIOLOGICALSTUDIES

    5PTOOFPATIENTSWITHEPILEPSYINDEVELOPINGCOUNTRIESDONOTRECEIVEAPPROPRIATETREATMENTANDOFAVAILABLE!%$SAREUTILIZEDBYOFTHEWORLDSSUFFERERS0HENOBARBITALISAN!%$THATISEFFECTIVETOLERABLECHEAPANDEASYTOUSEALLESSENTIALCONSIDERATIONSINDEVELOPINGCOUNTRIES3URGERYFORREFRACTORYEPILEPSYCOULDBECOSTBENElCIAL#OSTBENElTANDRISKBENElTRATIOSOFNEW!%$SSHOULDBEASSESSEDONALARGESCALEINDEVELOPEDCOUNTRIESSUCHINFORMATIONWOULDBEOFVALUEFORDEVELOPINGCOUNTRIESAFTERAPPROPRIATELYDESIGNEDCLINICALTRIALS

    #ONCLUSION

    )NDEVELOPINGCOUNTRIESWITHLARGERURALPOPULATIONSAFEWURBANANDSEMIURBANNEUROLOGISTSSUBSTANTIALBURDENOFDISEASEANDSCANTILYALLOCATEDHEALTHCARERESOURCESEPIDEMIOLOGYPROVIDESINFORMATIONNECESSARYFORALLINVOLVEDINPROMOTINGHEALTHTOOPTIMIZECAREINEPILEPSY.EUROEPIDEMIOLOGICALSTUDIESPROVIDEMORETHANINDICESOFBURDENTHEYSHOWTHEWAYFORWARD

    !CKNOWLEDGEMENT

    $R2OBERTA(2AVENFORHERHELPINPREPARINGTHISMANUSCRIPT

  • !%4)/,/'9/&%0),%039n2%0/24%$&2%15%.#9

    )NTRODUCTIONU4HERESPONDENTSWEREASKEDTOPROVIDETHElVEMOSTFREQUENTLYENCOUNTEREDCAUSESOFEPILEPSY)GNORINGTHEORDEROFTHEINDIVIDUALRESPONSESTHEPROPORTIONOF

    COUNTRIESTHATMENTIONEDEACHAETIOLOGYWASCALCULATEDGLOBALLYANDFOREACHOFTHEREGIONS

    3ALIENTlNDINGSU'LOBALLYTRAUMAWASTHEMOSTFREQUENTLYREPORTEDAETIOLOGYOFEPILEPSYBYOFTHERESPONDINGCOUNTRIES

    U#ENTRALNERVOUSSYSTEMINFECTIONSINCLUDINGABSCESSESENCEPHALITISWITHALLAETIOLOGIESANDBACTERIALMENINGITISBUTEXCLUDINGPARASITICINFESTATIONSANTENATALANDPERINATALRISKFACTORSANDCEREBROVASCULARDISORDERSWEREAMONGTHEMOSTFREQUENTLYREPORTEDAETIOLOGYOFEPILEPSYBYANDOFTHERESPONDINGCOUNTRIESRESPECTIVELY

    U)DIOPATHICEPILEPSYINCLUDINGTHEGENETICCAUSESWASMENTIONEDASONEOFTHElVEMOSTCOMMONAETIOLOGIESOFEPILEPSYBYOFTHERESPONDINGCOUNTRIES

    U4RAUMACENTRALNERVOUSSYSTEMINFECTIONSANDIDIOPATHICEPILEPSYWEREMENTIONEDAMONGTHElVEMOSTFREQUENTLYREPORTEDAETIOLOGIESOFEPILEPSYBYTHERESPONDINGCOUNTRIESACROSSDIFFERENTINCOMEGROUPSOFCOUNTRIES

    U!MONGTHElVEMOSTCOMMONAETIOLOGIESTUMOURSWEREMENTIONEDBYOFTHERESPONDINGCOUNTRIESCONGENITALDEFECTSPARASITICINFESTATIONSEXOGENOUSCHEMICALSINCLUDINGALCOHOLANDDRUGSCRYPTOGENICDEGENERATIVEDISORDERSFEBRILECONVULSIONSHIPPOCAMPALSCLEROSISANDCEREBRALPALSY

    U#EREBROVASCULARDISORDERSWEREALSOAMONGTHElVEMOSTFREQUENTLYREPORTEDAETIOLOGIESOFEPILEPSYBYTHERESPONDINGCOUNTRIESINALLINCOMECATEGORIESEXCEPTLOWINCOMECOUNTRIESWHEREPARASITICINFESTATIONSWEREANIMPORTANTAETIOLOGYOFEPILEPSYASMENTIONEDBYOFCOUNTRIES

    U0ERINATALCAUSESWEREREPORTEDAMONGTHElVEMOSTIMPORTANTAETIOLOGIESOFEPILEPSYBYALLINCOMECATEGORIESEXCEPTHIGHINCOMECOUNTRIES

    ,IMITATIONSU!ETIOLOGIESOFEPILEPSYASREPORTEDBYRESPONDENTSAREAROUGHESTIMATEDATAWERENOTCOLLECTEDANDCALCULATEDUSINGSTRINGENTEPIDEMIOLOGICALRESEARCHMETHODS4HEINFORMATIONISBASEDONTHEEXPERIENCEANDIMPRESSIONOFAKEYPERSONINACOUNTRYWORKINGINTHEAREAOFEPILEPSYANDNOTNECESSARILYONACTUALDATAFROMRESPONDINGCOUNTRIES

    U)NMOSTCASESASPECIlCCAUSECANONLYBEDETERMINEDUSINGBASICINVESTIGATIONSINCLUDINGNEURORADIOLOGICALANDELECTROPHYSIOLOGICALSERVICES4HERECOULDBEMETHODOLOGICALDIFFERENCESAMONGVARIOUSCOUNTRIESBECAUSEMANYLOWINCOMECOUNTRIESHAVEPOORACCESSIBILITYTOEVENBASICINVESTIGATIONS

    U)NALMOSTOFCASESOFEPILEPSYTHEAETIOLOGYCANNOTBEIDENTIlEDEVENWITHTHEMOSTSOPHISTICATEDMETHODS(OWEVERTHECAUSEBEINGUNKNOWNWASMENTIONEDBYONLYOFCOUNTRIES/NEPOSSIBLEREASONCOULDBETHEWAYINWHICHTHEQUESTIONWASFRAMED!NOTHERCOULDBETHEUSEOFTERMhIDIOPATHICvWHICHACCORDINGTOSOMEREFERSTOAGENETICSYNDROMEWITHSTRICTLYDElNEDCLINICALAND%%'lNDINGSWHILEOTHERSMAYUSEITFORANYCASEINWHICHAETIOLOGYHASNOTBEENESTABLISHED

    U3OMEOFTHEENTITIESMENTIONEDSUCHASCEREBRALPALSYAREMANIFESTATIONSOFCEREBRALDAMAGEWHEREEPILEPSYCOEXISTSRATHERTHANBEINGTHECAUSEOFEPILEPSY

    #ONCLUSIONSU)DENTIFYINGTHECORRECTAETIOLOGYISESSENTIALINORDERTOESTABLISHAPPROPRIATETREATMENTANDOFFERAPROGNOSISTOTHEPATIENTANDFAMILY

    U4HEINFORMATIONREGARDINGTHECAUSESOFEPILEPSYALSOHASIMPLICATIONSFORMAKINGDECISIONSABOUTTHEDEVELOPMENTOFLOCALLYRELEVANTSTRATEGIESFORPREVENTIONANDMANAGEMENTRESEARCHGOALSANDEDUCATIONOFPRIMARYHEALTHCAREWORKERSANDCOMMUNITYPHYSICIANS

    U4HEINEQUITYINAVAILABILITYOFDIAGNOSTICRESOURCESINCLUDINGHUMANRESOURCESREQUIREDFORASSESSINGTHEAETIOLOGYOFEPILEPSYNEEDSTOBEDEALTWITH

    U4HETOPFOURMOSTFREQUENTLYREPORTEDAETIOLOGIESOFEPILEPSYTRAUMACENTRALNERVOUSSYSTEMINFECTIONSCEREBROVASCULARDISORDERSANDPERINATALRISKFACTORSAREPREVENTABLE#ONCERTEDMULTIDISCIPLINARYEFFORTSFOCUSINGONTHERISKFACTORSEGENFORCEMENTOFSTRICTTRAFlCREGULATIONSTOPREVENTTRAUMAORPROVIDINGSPECIlCPROTECTIONEGIMMUNIZATIONAGAINSTCOMMUNICABLEDISEASESFORTHESEPREVENTABLECAUSESCANHELPTODECREASESUBSTANTIALLYTHEBURDENATTRIBUTABLETOEPILEPSY

  • %(!

    "'% "

    %)#(&

    &*&'!"

    '#"

    &

    %"

    '

    %%

    #)&(

    %&

    &

    #$'

    (!#(%

    &

    #"

    "'

    %&'

    $#%'

    *

    #("'%

    &

    $#%'

    *

    #("'%

    &

    !%4)/,/'9/&%0),%039n2%0/24%$&2%15%.#9

  • !%4)/,/'9!.$2)3+&!#4/23

    %PILEPSYISTHEPROPENSITYFORANINDIVIDUALTOHAVERECURRENTUNPROVOKEDEPILEPTICSEIZURES4HESESEIZURESAREPRODUCEDBYABNORMALDISCHARGESOFNEURONSANDMAYBEAMANIFESTATIONOFMANYDIFFERENTCONDITIONSWHICHMODIFYNEURONALFUNCTIONORCAUSEPATHOLOGICALCHANGESINTHEBRAIN-ANYENVIRONMENTALGENETICPATHOLOGICALANDPHYSIOLOGICALFACTORSMAYBEINVOLVEDINTHEDEVELOPMENTOFSEIZURESANDEPILEPSY4HEPRESENCEOFAFAMILYHISTORYOFEPILEPSYISKNOWNTOENHANCEMOSTRISKFACTORSFOREPILEPSY4HESUSCEPTIBILITYTOEPILEPSYMAYTHEREFOREBEPARTLYGENETICALLYDETERMINEDANDTHISMAYVARYACCORDINGTOTHESTAGEOFBRAINMATURATION

    %PILEPSYISASSOCIATEDWITHAVARIETYOFSTATICORPROGRESSIVEPATHOLOGICALCHANGESEITHERCONGENITALORACQUIRED)NADDITIONANUMBEROFINHERITEDCONDITIONSMAYEXPRESSTHEMSELVESSOLELYTHROUGHEPILEPTICSEIZURES)TMAYTHEREFOREBEMOREAPPROPRIATETODESCRIBEEPILEPSYASASYMPTOMCOMPLEXRATHERTHANASAMEDICALCONDITIONINITSOWNRIGHT

    !ETIOLOGICALLYTHEEPILEPSIESARECLASSIlEDINTOFOURGROUPSIDIOPATHICSYMPTOMATICCRYPTOGENICANDPROGRESSIVE4HEIDIOPATHICEPILEPSIESARETHOUGHTTOBEGENETICALLYDETERMINEDANDAREUSUALLYASSOCIATEDWITHPARTICULARCLINICALCHARACTERISTICANDSPECIlCELECTROENCEPHALOGRAPHY%%'lNDINGS3YMPTOMATICEPILEPSIESAREACQUIREDCONDITIONSANDAREUSUALLYASSOCIATEDWITHASTRUCTURALABNORMALITYOFTHEBRAIN%PILEPSYISCLASSIlEDASCRYPTOGENICWHENNOCLEARABNORMALITYORPUTATIVERISKFACTORISIDENTIlEDFORWHATISPRESUMEDTOBEASYMPTOMATICORACQUIREDEPILEPTICCONDITION4HETERMPROGRESSIVEEPILEPSYISUSEDWHENEPILEPSYISASSOCIATEDWITHANEVOLVINGNEUROLOGICALCONDITION

    4HEPROBABLEAETIOLOGYORRISKFACTORFOREPILEPSYDEPENDSONTHEAGEOFTHEPATIENTANDTHETYPEOFSEIZUREn4HEMOSTCOMMONACQUIREDCAUSESINYOUNGINFANTSAREPERINATALHYPOXIAANDTRAUMAMETABOLICDISTURBANCESCONGENITALMALFORMATIONSOFTHEBRAINANDINFECTION)NYOUNGCHILDRENANDADOLESCENTSIDIOPATHICEPILEPSIESACCOUNTFORTHEMAJORITYOFCASESALTHOUGHTRAUMAANDINFECTIONPLAYAROLE&EBRILESEIZURESWHICHAREUSUALLYSHORTCONVULSIVEATTACKSOCCURRINGDURINGTHEEARLYPHASEOFAFEBRILEDISEASEARECOMMONINCHILDRENUNDERTHEAGEOFlVEYEARSANDNEEDTOBEDISTINGUISHEDFROMSEIZURESTRIGGEREDBYCENTRALNERVOUSSYSTEMINFECTIONSCAUSINGFEVERSUCHASMENINGITISANDENCEPHALITIS5NLESSFEBRILESEIZURESAREPROLONGEDRECURRENTOROCCURRINGONABACKGROUNDOFNEUROLOGICALHANDICAPTHEPROGNOSISISEXCELLENTANDITISUNLIKELYTHATTHECHILDWILLDEVELOPCHRONICEPILEPSY

    4HECAUSESOFADULTONSETEPILEPSYAREVERYVARIED"OTHIDIOPATHICEPILEPSYANDEPILEPSYATTRIBUTABLETOBIRTHTRAUMAMAYBEGININEARLYADULTHOOD/THERIMPORTANTCAUSESOFSEIZURESINADULTHOODAREHEADINJURYALCOHOLABUSEBRAINTUMOURSANDCEREBROVASCULARDISEASE)NDEVEL

    OPINGCOUNTRIESPARASITICDISORDERSSUCHASCYSTICERCOSISANDMALARIAMAYBEIMPORTANTCAUSALAGENTSFOREPILEPSY

    )DIOPATHICANDGENETICALLYDETERMINEDEPILEPSIES

    4HEIDIOPATHICORPRIMARYGENERALIZEDEPILEPSIESARETHEMOSTCOMMONOFTHEGENETICALLYDETERMINEDEPILEPSIES4HEPRECISEMODEOFINHERITANCEFORMOSTOFTHESECONDITIONSISCURRENTLYUNKNOWN/THERINHERITEDCONDITIONSINWHICHSEIZURESARETHESOLECLINICALMANIFESTATIONINCLUDETHEIDIOPATHICPARTIALEPILEPSIESEGBENIGNROLANDICEPILEPSY)NADDITIONTOTHESECONDITIONSWITHSEIZURESASTHEMAINCLINICALEXPRESSIONTHEREAREMANYRAREINHERITEDDISORDERSTHATPRESENTASNEUROLOGICALORSYSTEMICILLNESSESINCLUDINGSEIZURES4HEMOSTCOMMONOFTHESEDISORDERSARETUBEROUSSCLEROSISANDNEUROlBROMATOSIS4RISOMY$OWNSSYNDROMEMAYBEACCOMPANIEDBYSEIZURESPARTICULARLYINLATERLIFE

    3YMPTOMATICEPILEPSIES

    #OMMONCAUSESOFSYMPTOMATICEPILEPSIESINCLUDEHEADTRAUMABIRTHTRAUMACEREBROVASCULARDISORDERSCEREBRALANOXIABRAININFECTIONSCORTICALMALFORMATIONSANDBRAINTUMOURS)NRESOURCEPOORCOUNTRIESPARASITICINFESTATIONSSUCHASMALARIANEUROCYSTICERCOSISANDPARAGONIMIASISAREIMPORTANTRISKFACTORS-OSTEPILEPSIESSTARTINGINADULTLIFEARESYMPTOMATICANDINVESTIGATIONSTODETECTANYUNDERLYINGAETIOLOGYAREMANDATORY

    (EADTRAUMAISANIMPORTANTCAUSEOFSYMPTOMATICEPILEPSYANDMAYACCOUNTFORUPTOOFALLCASESOFEPILEPSY4HELIKELIHOODOFDEVELOPINGEPILEPSYAFTERHEADTRAUMADEPENDSONTHESEVERITYOFTHEINJURYANDTHEPRESENCEOFCOMPLICATINGFACTORSINCLUDINGPROLONGEDLOSSOFCONSCIOUSNESSPOSTTRAUMATICAMNESIAINTRACRANIALBLEEDINGMISSILEPENETRATIONORDEPRESSEDSKULLFRACTURE)TISUNUSUALFOREPILEPSYTODEVELOPUNLESSONEOFTHESEFACTORSISPRESENT3EIZURESOCCURRINGIMMEDIATELYAFTERTHEINJURYDONOTUSUALLYPRESAGETHEDEVELOPMENTOFCHRONICEPILEPSY

    4HROMBOEMBOLICEVENTSANDCEREBRALHAEMORRHAGEAREIMPORTANTCAUSESOFSYMPTOMATICEPILEPSYSTARTINGINLATERLIFEWHERETHEYARERESPONSIBLEFORUPTOCASES)TISESTIMATEDTHATAPPROXIMATELYOFPEOPLEWITHSTROKESWILLEVENTUALLYDEVELOPEPILEPTICSEIZURES6ASCULARMALFORMATIONSANDCEREBRALANEURYSMSMAYALSOCAUSESYMPTOMATICEPILEPSYWHETHERORNOTHAEMORRHAGEHASOCCURRED

    !NYINTRACRANIALINFECTIONWHETHERVIRALBACTERIALORFUNGALCANCAUSESEIZURES4HESEVERITYOFTHEEPILEPTICDISORDERUSUALLYDEPENDSONTHENATUREOFTHEINFECTIONANDTHEEXTENTOFTHEDAMAGE-ENINGITISTHEMOSTCOMMONINTRACRANIALINFECTIONISCOMMONINYOUNGCHILDRENBUTALSOAFFECTSOLDERAGEGROUPS%PILEPSYISANUNUSUALCOMPLICA

    0ROF*OSEMIR73ANDER

  • !%4)/,/'9!.$2)3+&!#4/23

    TIONOFACUTEBACTERIALMENINGITISOCCURRINGMAINLYINPEOPLEGIVENINADEQUATEORLATETREATMENT

    )NTRACRANIALTUBERCULOSISCANCAUSECORTICALANDMENINGEALTUBERCULOMASTHATMAYPRESENTWITHSEIZURESSOMETIMESDEVELOPINGYEARSAFTERTHEPRIMARYINFECTION&UNGALINFECTIONSOFTHECENTRALNERVOUSSYSTEMAREARARECAUSEOFEPILEPSYTHEMOSTCOMMONCRYPTOCOCCOSISANDBLASTOMYCOSISAREOFTENASSOCIATEDWITHIMMUNEDElCIENCIES3URVIVORSOFVIRALENCEPHALITISESPECIALLYRESULTINGFROMHERPESMAYDEVELOPEPILEPSYTHATISINTRACTABLETOMEDICALTREATMENT)NTRAUTERINEANDPERINATALINFECTIONSCAUSEDBYTOXOPLASMOSISRUBELLAANDSYPHILISMAYCAUSEEXTENSIVECORTICALDAMAGEANDSEVEREPARTIALEPILEPSYMAYRESULTIFTHECHILDSURVIVES

    "RAINABSCESSESARERAREANDOFTENFATAL%PILEPSYDEVELOPSINABOUTTHREEQUARTERSOFSURVIVORSANDISUSUALLYVERYSEVEREANDINTRACTABLE

    %PILEPSYMAYOCCURINTHECOURSEOFANUMBEROFPARASITICDISORDERSINCLUDINGNEUROCYSTICERCOSISFALCIPARUMMALARIASCHISTOSOMIASISANDPARAGONIMIASIS3UCHINFECTIONSMAYBERESPONSIBLEFORTHEHIGHERINCIDENCEOFEPILEPSYINSOMEPARTSOFTHETROPICALWORLDTHOSEMOSTFREQUENTLYASSOCIATEDWITHEPILEPSYARENEUROCYSTICERCOSISANDFALCIPARUMMALARIA.EUROCYSTICERCOSISISTHEMOSTCOMMONACQUIREDCAUSEOFEPILEPSYINRESOURCEPOORCOUNTRIES4HISOCCURSWHENAHUMANBECOMESTHEINTERMEDIATEHOSTFOR4AENIASOLIUMTHROUGHTHEINGESTIONOFEGGSCONTAINEDINHUMANFAECES#YSTSCONTAININGANEMBRYOMAYEMERGEINANYAREAOFTHECEREBRUMVENTRICLESORSUBARACHNOIDSPACEOFTHEINFESTEDPATIENTLEADINGTOAVARIETYOFNEUROLOGICALSIGNSINCLUDINGEPILEPSY#EREBRALMALARIAWHICHISTHEMOSTIMPORTANTCOMPLICATIONOFFALCIPARUMMALARIAMAYlRSTPRESENTASSTATUSEPILEPTICUS)TCARRIESAHIGHMORTALITYANDMORBIDITYSURVIVORSOFTENHAVENEUROLOGICALDISABILITIESANDPARTIALSEIZURESTHATRESPONDPOORLYTOTREATMENT

    !NALLERGICREACTIONTOVACCINECOMPONENTSVERYOCCASIONALLYLEADSTOANACUTEENCEPHALOPATHYTHATMAYRESULTINCHRONICEPILEPSY)TISEXTREMELYRAREHOWEVERANDISBECOMINGEVENMOREUNCOMMONASMOREPURIlEDANDLESSANTIGENICVACCINESAREUSED!STHEINCIDENCEOFEPILEPSYISATITSHIGHESTINEARLYCHILDHOODTHEAGEATWHICHMOSTVACCINATIONSARECARRIEDOUTSOMECHILDRENWILLDEVELOPSEIZURESINTEMPORALASSOCIATIONWITHVACCINATIONBYCOINCIDENCE/THERCHILDRENEXPERIENCEAFEBRILEREACTIONTOSOMEVACCINATIONSANDMAYHAVEAFEBRILESEIZUREASARESULTWITHOUTLONGTERMSEQUELAE

    %RRORSINNEURONALMIGRATIONDURINGEMBRYOGENESISMAYRESULTINCORTICALMALFORMATIONS4HESEMALFORMATIONSWEREUNTILRECENTLYCONSIDEREDTOBERAREHOWEVERWITHTHEDEVELOPMENTOFHIGHRESOLUTIONNEUROIMAGINGTHEYAREBEINGRECOGNIZEDWITHINCREASINGFREQUENCY4HEAETIOLOGYFORTHESECORTICALMALFORMATIONSISUNKNOWNATTHISSTAGE

    BUTPOTENTIALCAUSESMAYINCLUDEINTRAUTERINEINFECTIONMATERNALILLNESSOREXPOSURETOTOXINSATCRUCIALPHASESOFBRAINFORMATION

    (IPPOCAMPALSCLEROSISISTHEMOSTCOMMONLESIONIDENTIlEDINPATHOLOGICALSPECIMENSOFPATIENTSWITHTEMPORALLOBEEPILEPSYWHOHAVEUNDERGONETEMPORALLOBECTOMY)TCONSISTSOFATROPHICCHANGESWITHAVARIABLEDEGREEOFCELLLOSSANDGLIOSISINVOLVINGPARTORTHEWHOLEOFTHEHIPPOCAMPUS)TISUSUALLYUNILATERALANDCANBEIDENTIlEDBYBRAINIMAGING4EMPORALLOBEEPILEPSYWITHHIPPOCAMPALSCLEROSISISSTRONGLYASSOCIATEDWITHAHISTORYOFPROLONGEDFEBRILECONVULSIONSINCHILDHOOD2ESECTIONOFTHEATROPHICAREAWHENPOSSIBLEISASSOCIATEDWITHAGOODSURGICALOUTCOMEWITHCOMPLETESEIZURECONTROLINOVEROFCASES

    #RYPTOGENICEPILEPSIES

    #URRENTLYUPTOOFPATIENTSHAVENOIDENTIlABLECAUSEFORTHEIRSEIZURES4HISPROPORTIONISRAPIDLYDECREASINGASADVANCESINNEUROIMAGINGPARTICULARLYMAGNETICRESONANCEIMAGING-2)AREMADE4HETERMCRYPTOGENICEPILEPSYISSOMETIMESUSEDINTERCHANGEABLYWITHIDIOPATHICEPILEPSY4HISSHOULDBEAVOIDEDANDTHETERMIDIOPATHICEPILEPSYRESERVEDFORTHOSEINHERITEDCONDITIONSINWHICHSEIZURESOCCURASTHEONLYMANIFESTATIONOFTHEDISORDER

    0ROGRESSIVEEPILEPSIES

    4HEPROGRESSIVEMYOCLONICEPILEPSIESAREAGROUPOFDISORDERSCHARACTERIZEDBYTHEDEVELOPMENTOFMYOCLONICANDOTHERSEIZURESINASSOCIATIONWITHOTHERCLINICALINHERITEDDEGENERATIVEBRAINDISORDERSANDINBORNERRORSOFMETABOLISM4HESEINCLUDEADRENOLEUKODYSTROPHY!LPERSDISEASEAND4AY3ACHSDISEASE0HENYLKETONURIAPORPHYRIAANDNEURONALCEROIDLIPOFUSCINOSISMAYALSOCAUSESEIZURES

    %PILEPSYMAYSOMETIMESCOMPLICATEDEGENERATIVEBRAINCONDITIONSSUCHAS!LZHEIMERSDISEASE(UNTINGTONSCHOREASTRIATONIGRALDEGENERATIONAND#REUTZFELD*AKOBDISEASEASMANYASOFPATIENTSWITH!LZHEIMERSDISEASEMAYDEVELOPSEIZURES

    )NVOLVEMENTOFTHECENTRALNERVOUSSYSTEMEVENTUALLYOCCURSINTHEMAJORITYOFPEOPLEDEVELOPING!)$3)TMAYTAKETHEFORMOFOPPORTUNISTICINFECTIONORNEOPLASTICLESIONS!NENCEPHALOPATHYTHATSEEMSTOBECAUSEDBY()6ITSELFHASALSOBEENRECOGNIZED

    )NTRACRANIALTUMOURSEITHERPRIMARYORMETASTATICMAYRESULTINEPILEPSY4UMOURSARERESPONSIBLEFORABOUTAlFTHOFSEIZURESSTARTINGBETWEENTHEAGESOFANDYEARSANDABOUTOFSEIZURESSTARTINGAFTERTHEAGEOFYEARS

  • %PILEPSYTHESERVICES

    %0),%0394(%3%26)#%3

  • $)!'./34)#3%26)#%3

    )NTRODUCTIONU4HERESPONDENTSWEREASKEDABOUTTHEAVAILABILITYOFDIAGNOSTICEQUIPMENTFORTHEMANAGEMENTOFEPILEPSYEGCOMPUTERIZEDAXIALTOMOGRAPHY#!4MAGNETICRESONANCEIMAGING-2)ANDELECTROENCEPHALOGRAPHY%%'4HEYWEREASKEDABOUTTHEAVAILABILITYOFLONGTERMVIDEO%%'MONITORINGTHERAPEUTICDRUGMONITORING

    ANDNEUROPSYCHOLOGICALSERVICESANDALSOWHETHERTHERAPEUTICDRUGMONITORINGANDNEUROPSYCHOLOGICALSERVICESWEREAVAILABLEFREEOFCHARGEORWITHOUTSPECIALCONDITIONSWHENCOVEREDBYINSURANCE

    3ALIENTlNDINGSU#!4AND-2)AREAVAILABLETOHEALTHPROFESSIONALSINANDRESPECTIVELYOFTHERESPONDINGCOUNTRIES

    U)N!FRICAWHILE#!4ISAVAILABLEINOFTHERESPONDINGCOUNTRIES-2)ISAVAILABLEINONLY#!4ISAVAILABLEINOFLOWINCOMECOUNTRIESCOMPAREDWITH-2)WHICHISAVAILABLEINONLY

    U%%'ISAVAILABLETOTHEHEALTHPROFESSIONALSDEALINGWITHPATIENTSWITHEPILEPSYINOFTHERESPONDINGCOUNTRIES,ONGTERMVIDEO%%'MONITORINGHOWEVERISAVAILABLEINONLYOFTHERESPONDINGCOUNTRIES

    U%%'ISAVAILABLEINOFTHERESPONDINGCOUNTRIESINTHE7ESTERN0ACIlCIN3OUTH%AST!SIAIN!FRICAINTHE!MERICASINTHE%ASTERN-EDITERRANEANANDIN%UROPE

    U,ONGTERMVIDEO%%'MONITORINGISAVAILABLEINOFLOWINCOMECOUNTRIESCOMPAREDWITHOFHIGHINCOMECOUNTRIES

    U4HERAPEUTICDRUGMONITORINGISAVAILABLEINOFTHERESPONDINGCOUNTRIES)NABOUTTWOTHIRDSOFTHESECOUNTRIESITISAVAILABLETOPEOPLEWITHEPILEPSYFREEOFCHARGEORWITHOUTANYSPECIALCONDITION

    U4HERAPEUTICDRUGMONITORINGISAVAILABLEINOFTHERESPONDINGCOUNTRIESIN!FRICAINTHE7ESTERN0ACIlCIN3OUTH%AST!SIAINTHE%ASTERN-EDITERRANEANIN%UROPEANDINTHE!MERICAS&URTHERMOREITISAVAILABLEFREEOFCHARGEORWITHOUTANYSPECIALCONDITIONFORPEOPLEWITHEPILEPSYINTHREEQUARTEROFCOUNTRIESIN%UROPEWHERESUCHFACILITIESEXISTCOMPAREDWITHONETHIRDINTHE%ASTERN-EDITERRANEAN

    U.EUROPSYCHOLOGICALSERVICESAREAVAILABLEINOFTHERESPONDINGCOUNTRIES)NMORETHANHALFOFTHESECOUNTRIESTHEYAREAVAILABLETOPEOPLEWITHEPILEPSYFREEOFCHARGEORWITHOUTANYSPECIALCONDITION

    U.EUROPSYCHOLOGICALSERVICESAREAVAILABLEINOFLOWINCOMECOUNTRIESANDAREAVAILABLEFREEOFCHARGEINABOUTONETHIRDOFTHEM3UCHFACILITIESAREPRESENTINOFHIGHINCOMECOUNTRIESANDAREAVAILABLEFREEOFCHARGEINTWOTHIRDSOFTHEM

    ,IMITATIONSU"ECAUSETHESOURCESOFINFORMATIONINMOSTCOUNTRIESWEREKEYPEOPLEWORKINGINTHEAREAOFEPILEPSYTHEDATAPERTAINMAINLYTOCOUNTRIESWHEREINDIVIDUALSWITHANINTERESTINPROVIDINGEPILEPSYCAREEXIST)TISTHEREFOREPOSSIBLETHATTHElGURESMIGHTBEOVERESTIMATED

    U3OMEOFTHERESPONDENTSMENTIONEDTHATTHEEQUIPMENTWASPRESENTBUTNOTINWORKINGORDERANDTHEREFORENOTAVAILABLEFORPATIENTCARE

    U2ESPONDENTSMAYHAVEREPLIEDPOSITIVELYTOTHEQUESTIONOFAVAILABILITYOFDIAGNOSTICFACILITIESINTHECOUNTRYEVENIFONLYAVERYLIMITEDNUMBEROFSUCHFACILITIESAREAVAILABLEINAFEWLARGECITIES.OINFORMATIONWASOBTAINEDONTHETYPEQUALITYANDESTIMATEDNUMBERSOFSUCHFACILITIES

    U)NSOMECOUNTRIESTHEREAREPRIORITYRULESFORACCESSTO#!4OR-2)

    #ONCLUSIONSU4HEDIAGNOSTICSERVICESARENEEDEDFORAPPROPRIATEMANAGEMENTOFEPILEPSYESPECIALLYATTHEREFERRALLEVELOFCARE4HEINEQUITIESOBSERVEDACROSSDIFFERENTINCOMEGROUPSANDREGIONSNEEDTOBEDEALTWITH

    U-OSTNEWTECHNOLOGIESAREAVAILABLEINMANYCOUNTRIESTHOUGHTHEYMAYBECONCENTRATEDINAFEWCENTRESORIN

    MAJORCITIES4HEAIMSHOULDBETOIMPROVETHECOVERAGETOINCLUDETHEENTIREPOPULATION

    U3OMETIMESTHEEQUIPMENTCONSTITUTESAMAJORCOMPONENTOFTHECAPITALCOST)NLOWINCOMECOUNTRIESWHEREFEWERRESOURCESAREAVAILABLETHEHIGHRECURRENTCOSTSINVOLVEDINMAINTAININGTHEEQUIPMENTMAYALSOLIMITITSAVAILABILITY

  • $&!

    &

    "&

    '

    $)(

    '(

    '

    )&$%

    '(

    (&&

    ##

    '(

    $*

    &"

    !

    $*&"

    !

    !

    $

    %

    !

    !

    %

    "

    #

    $-'!

    )#-'!

    .

    +0/&

    ./

    .'

    0-+,#

    ./#-*

    #"'/#--

    *# *

    #./#

    -* !'$

    '!

    +-("

    '"#+

    +1

    +1#-)

    '""(#

    '%& #-) '

    ""(#

    '%&

    "

    &

    #

    !

    "

    "

    !

    "!

    "

    !

    !$

    $)!'./34)#3%26)#%3

  • 02)-!29#!2%

    )NTRODUCTIONU4HERESPONDENTSWEREASKEDTOLISTTHElVEMAINTASKSOFPRIMARYCAREWORKERSINVOLVEDINEPILEPSYCAREINTHECOUNTRY)GNORINGTHEORDEROFTHEINDIVIDUALRESPONSES

    THEPROPORTIONOFCOUNTRIESTHATMENTIONEDEACHTASKWASCALCULATEDGLOBALLYANDFOREACHOFTHEREGIONS

    3ALIENTlNDINGSU&OLLOWUPANDMONITORINGOFTREATMENTISREPORTEDAMONGTHElVEMAINTASKSOFPRIMARYHEALTHWORKERSINVOLVEDINEPILEPSYCAREBYOFTHERESPONDINGCOUNTRIES4HISTASKINCLUDESMONITORINGOF!%$COMPLIANCEANDADVERSEEFFECTS

    U-AINTENANCEORPRESCRIPTIONOF!%$SISMENTIONEDAMONGTHElVEMAINTASKSBYOFTHERESPONDINGCOUNTRIES

    U)NFORMATIONANDEDUCATIONOFTHEPATIENTSANDCAREGIVERSREGARDINGEPILEPSYISDESCRIBEDAMONGTHElVEMAINTASKSOFPRIMARYHEALTHWORKERSBYOFTHERESPONDINGCOUNTRIES!FEWRESPONDENTSALSOMENTIONEDCOUNSELLINGREGARDINGDRIVINGSOCIALISSUESPREGNANCYSCHOOLEDUCATIONFORCHILDRENWITHEPILEPSYMEDICOnLEGALADVICEANDTRAININGINBASIClRSTAIDANDSEIZUREPREVENTIONAMONGTHElVEMAINTASKSOFPRIMARYHEALTHWORKERSINVOLVEDINEPILEPSYCARE

    U#ASElNDINGISREPORTEDAMONGTHElVEMAINTASKSOFPRIMARYHEALTHWORKERSBYOFTHERESPONDINGCOUNTRIES

    U2EFERRALOFPATIENTSWITHEPILEPSYFORCONlRMATIONOFDIAGNOSISINITIATIONOFTREATMENTSPECIALIZEDINVESTIGATIONSORSPECIALISTTREATMENTFORUNCONTROLLEDCASESAREALSOIDENTIlEDAMONGTHElVEMAINTASKSOFPRIMARYCAREWORKERSBYOFTHERESPONDINGCOUNTRIES

    U0SYCHOSOCIALSUPPORTANDCOMMUNITYREHABILITATIONOFTHERESPONDINGCOUNTRIESANDLIAISONWITHSPECIALISTSANDOTHERSERVICESAREALSOREPORTEDAMONGTHElVEMAINTASKSOFPRIMARYHEALTHWORKERSINVOLVEDINEPILEPSYCARE

    U/THERTASKSAREALSOREPORTEDANDINCLUDEEMERGENCYTREATMENTOFTHERESPONDENTSINITIATIONOFTREATMENTANDMAINTENANCEOFRECORDS

    U)NFORMATIONANDEDUCATIONOFPATIENTSANDCAREGIVERSREGARDINGEPILEPSYISMENTIONEDASONEOFTHElVEMAINTASKSBYOFLOWINCOMECOUNTRIESCOMPAREDWITHOFHIGHINCOMECOUNTRIES

    ,IMITATIONSU4HEINFORMATIONISBASEDONTHEEXPERIENCEANDIMPRESSIONOFAKEYPERSONINACOUNTRYWORKINGINTHEAREAOFEPILEPSYANDNOTONACTUALDATAFROMRESPONDINGCOUNTRIES

    U4HEDATAREPORTASSESSMENTSBYHEALTHPROFESSIONALSOFTHETASKSPERFORMEDBYTHEPRIMARYCAREWORKERSITISPOSSIBLETHATTHESEMAYDIFFERFROMTHEVIEWSOFTHEPRIMARYCAREWORKERSTHEMSELVES

    U)NFORMATIONONTHEQUALITYOFSERVICESANDTHEIRAVAILABILITYWITHINEACHCOUNTRYWASNOTOBTAINED

    U"ECAUSETHEINFORMATIONWASNOTOBTAINEDINASTRUCTUREDFORMATITMIGHTALSOUNDERESTIMATESOMEOFTHETASKSPERFORMEDBYTHEPRIMARYCAREWORKERS

    #ONCLUSIONSU,ACKOFACCESSHASBEENIDENTIlEDASAMAJORBARRIERTOADEQUATETREATMENTINBOTHHIGHINCOMEANDLOWINCOMECOUNTRIES!DEQUATETRAININGOFTHEHEALTHWORKERSPROVIDINGlRSTLEVELOFCONTACTINCASEDETECTIONINITIATIONOFTREATMENTWITH!%$SWHERELOCALGUIDELINESPERMITFOLLOWUPANDMONITORINGFORCOMPLIANCEANDADVERSEEFFECTSMIGHTBETHEMOSTCOSTEFFECTIVEWAYTODECREASETHETREATMENTGAPINTHEMAJORITYOFCOUNTRIES

    U0RIMARYHEALTHWORKERSARETHEMOSTAPPROPRIATECHOICEFORPROVIDINGINFORMATIONANDEDUCATIONTOTHEPATIENTSCAREGIVERSANDTHECOMMUNITYASAWHOLEABOUTTHEDISORDERTHEDRUGSANDTHEIRSIDEEFFECTSANDTHE

    IMPLICATIONSANDSOCIALISSUESINVOLVED4HISROLENEEDSTOBEENCOURAGED

    U(EALTHSERVICEREFORMSAREONGOINGINMANYCOUNTRIESWHICHPROVIDESTHEPOLICYMAKERSANDPLANNERSWITHANOPPORTUNITYTOINCLUDEADEQUATEEPILEPSYCAREAMONGTHETASKSOFPRIMARYHEALTHWORKERS

    U#OMMUNITYBASEDREHABILITATIONNEEDSTOBEADVOCATEDFORBETTERINTEGRATIONANDIMPROVEDPSYCHOSOCIALFUNCTIONINGOFTHEPATIENTWITHEPILEPSY

    U"ETTERLIAISONANDREFERRALNETWORKSERVICESBETWEENPRIMARYANDSECONDARYCAREAREREQUIREDTOENSURETHEBESTPOSSIBLECAREFORTHEPATIENTWITHEPILEPSY

  • (')+

    .

    ',&+)

    #*

    '$$'-

    ,(&

    %'

    +')#&!

    #&+

    &&

    ' ),!

    *

    & ')%

    +#'&&

    ,

    +#'&

    ))

    $

    *

    #&!

    ,((')

    +&)

    "#$#+

    +#'&

    ##*'&

    %)!

    &.+)

    +%

    &+

    +#+#

    '&' +

    )+%

    &+

    #&+

    &&

    ' )'

    )*

    (')+

    .

    ',&+)

    #*

    '$

    $'-,(&

    %'

    +')#&!

    #&+

    &&

    ' ),!

    *

    & ')%

    +#'&&

    ,

    +#'&

    ))

    $

    *

    #&!

    02)-!29#!2%

  • 02/6)3)/./!2%

    )NTRODUCTION

    4HEPRIMARYFOCUSOFCAREFORPATIENTSWITHEPILEPSYISTHEPREVENTIONOFFURTHERSEIZURESWHICHMAYLEADTOADDITIONALMORBIDITYOREVENMORTALITY4HEGOALOFTREATMENTSHOULDBETHEMAINTENANCEOFANORMALLIFESTYLEIDEALLYBYCOMPLETESEIZURECONTROLWITHOUTORWITHMINIMALSIDEEFFECTSSOTHATTHEPATIENTSFUNCTIONALCAPACITYISRESTOREDTOHISORHERMAXIMALPOTENTIAL)FTHESEIZURESAREPROVOKEDBYEXTERNALFACTORSFORINSTANCESLEEPDEPRIVATIONOREXCESSIVEALCOHOLSIMPLEAVOIDANCEMIGHTBESUFlCIENTTOPREVENTFURTHERATTACKS&ORTHEMAJORITYOFPATIENTSHOWEVER!%$THERAPYISTHEMAINSTAYOFTREATMENT.ONPHARMACOLOGICALSTRATEGIESAREPRIMARILYRESERVEDFORDRUGRESISTANTEPILEPSY)NADDITIONTOSEIZURECONTROLPATIENTSWITHEPILEPSYHAVEARANGEOFPSYCHOSOCIALNEEDSTHATMAYREQUIREATTENTION$ESPITETHESHAREDCONCERNSOFPATIENTSANDDOCTORSTHEQUALITYOFCAREANDTHERAPEUTICOUTCOMEMAYDIFFERACROSSCOUNTRIESBECAUSEOFVARIATIONSINMEDICALSYSTEMS4HE#OMMISSIONOF%UROPEAN!FFAIRSOF),!%HASDElNEDSTANDARDSFORAPPROPRIATECAREWHICHHAVENOTYETBEENMETBYMANY%UROPEANCOUNTRIES4HESITUATIONINMANYDEVELOPINGCOUNTRIESISLIKELYTOBEEVENLESSSATISFACTORY

    0HARMACOLOGICALTREATMENT

    -ODERNPHARMACOTHERAPYOFEPILEPSYWASHERALDEDBYTHESERENDIPITOUSDISCOVERYOFTHEANTICONVULSANTPROPERTIESOFPHENOBARBITALINBY!LFRED(AUPTMANN$ESPITETHEDEVELOPMENTOFSUCCESSIVEGENERATIONSOF!%$SPHENOBARBITALHASRETAINEDAUNIQUEPOSITIONINTHETHERAPEUTICARMAMENTARIUMANDISSTILLTHEMOSTWIDELYPRESCRIBEDTREATMENTWORLDWIDE)TSADVANTAGESINCLUDERELIABILITYOFSUPPLYAFFORDABLECOSTBROADSPECTRUMOFACTIONANDEASEOFUSE4HEDRUGALSOHASDISADVANTAGESSUCHASSEDATIONBEHAVIOURALSIDEEFFECTSENZYMEINDUCTIONANDPOSSIBLETERATOGENESIS

    !NOTHERSIGNIlCANTMILESTONEIN!%$DEVELOPMENTWASTHEINTRODUCTIONOFPHENYTOINTHElRSTNONSEDATING!%$INTHESASARESULTOFSYSTEMATICSCREENINGOFCOMPOUNDSUSINGNOVELANIMALMODELS!NUMBEROFOTHER!%$SHAVEBECOMEAVAILABLEINTHEENSUINGYEARSINCLUDINGCARBAMAZEPINEETHOSUXIMIDEPRIMIDONEVALPROICACIDANDSOMEBENZODIAZEPINES4HESEAGENTSAREGENERALLYREGARDEDAShOLDvORhESTABLISHEDv!%$S!FTERAHIATUSOFNEARLYYEARSTHEREHASBEENACCELERATEDDEVELOPMENTOFNEWER!%$SWITHCOMPOUNDSHAVINGBEENLICENSEDGLOBALLYSINCETHELATES4HESEAREINCHRONOLOGICALORDERVIGABATRINZONISAMIDEOXCARBAZEPINELAMOTRIGINEFELBAMATEGABAPENTINTOPIRAMATETIAGABINELEVETIRACETAMANDPREGABALIN!LTHOUGHNONEOFTHEMODERN!%$SHASDEMONSTRATEDSUPERIOREFlCACYTOTHEESTABLISHEDAGENTSTHEYMAYBETHEPREFERREDOPTIONFORSOMEPATIENTSASTHEYAREGENERALLYBETTERTOLERATEDANDPRODUCEFEWERDRUGINTER

    ACTIONS7HETHERTHEIRSUBSTANTIALLYHIGHERCOSTISJUSTIlEDINTHEMAJORITYOFPEOPLEWITHEPILEPSYISOPENTODEBATE

    !%$SDIFFERINMANYIMPORTANTASPECTSINCLUDINGTHEIREFlCACYAGAINSTDIFFERENTSEIZURETYPESIEABSENCEMYOCLONUSPARTIALTONICnCLONICANDATONICTHEIRSIDEEFFECTPROlLESIENEUROTOXICITYIDIOSYNCRATICREACTIONSLONGTERMCOMPLICATIONSANDTERATOGENICITYTHEIRPOTENTIALFORPHARMACOKINETICINTERACTIONSIEENZYMEINDUCTIONANDINHIBITIONANDTHEIREASEOFUSEIETITRATIONANDDAILYDOSING!N!%$SHOULDBESELECTEDTOhMATCHvTHECHARACTERISTICSOFTHEPATIENTSUCHASHISORHEREPILEPSYSYNDROMEAGEGENDERCOEXISTINGILLNESSESANDCONCOMITANTMEDICATION7HENMONOTHERAPYHASFAILEDTHEREAREINSUFlCIENTDATATOGUIDETHEPHYSICIANONHOWBESTTOCOMBINE!%$S#OMBINATIONSWITHLOWRISKOFPHARMACOKINETICINTERACTIONSSHOULDBEPREFERREDANDTHEREISSOMEEVIDENCETHATTHESUCCESSOFDUOTHERAPYCANBEIMPROVEDBYPAYINGATTENTIONTOMECHANISMSOFACTIONANDUSINGLOWERDOSAGES

    0ATIENTSNEWLYDIAGNOSEDWITHEPILEPSYSHOULDBESTARTEDONASINGLE!%$WHICHWILLBEEFFECTIVEINCONTROLLINGTHEIRSEIZURESINAPPROXIMATELY4REATMENTMAYBESAFELYWITHDRAWNINSOMEPATIENTSWHOHAVEENTEREDREMISSIONPARTICULARLYINCHILDREN4HEREISSTILLNOCONSENSUSABOUTTHEDURATIONOFREMISSIONBEFORE!%$WITHDRAWALSHOULDSTART)NCHILDRENAPERIODOFSIXMONTHSHASBEENADVOCATEDANDINADULTSAPERIODOFATLEASTTWOYEARS7HENTWOSUCCESSIVE!%$SGIVENASMONOTHERAPYHAVEFAILEDMOSTAUTHORITIESWOULDRECOMMENDCOMBINATIONTHERAPY/UTCOMESTUDIESSUGGESTTHATAFTERFAILUREOFTWOORTHREETREATMENTSCHEDULESTHECHANCEOFSUBSEQUENTREMISSIONWITHFURTHERDRUGMANIPULATIONISSMALL"ETWEENANDOFPATIENTSWILLCONTINUETOHAVESEIZURESDESPITEhOPTIMALv!%$THERAPY4HESEINDIVIDUALSWITHREFRACTORYEPILEPSYSHOULDBEASSESSEDFORSUITABILITYOFNONPHARMACOLOGICALMANAGEMENTSTRATEGIESSUCHASSURGERYVAGUSNERVESTIMULATION6.3ORKETOGENICDIET

    .ONPHARMACOLOGICALTREATMENT

    %PILEPSYSURGERYISDISCUSSEDSEPARATELYIN3ECTION!NOTHERFORMOFNONPHARMACOLOGICALTREATMENTFORMEDICALLYINTRACTABLEEPILEPSYIS6.34HEVAGUSNERVESTIMULATORCONSISTSOFAPROGRAMMABLESIGNALGENERATORIMPLANTEDUNDERTHESKININTHEPATIENTSLEFTUPPERCHEST0OWEREDBYABATTERYTHESYSTEMDELIVERSINTERMITTENTELECTRICALSTIMULATIONTOTHELEFTVAGUSNERVEINTHENECKVIAACONNECTINGLEAD6.3HASDEMONSTRATEDEFlCACYAGAINSTPARTIALONSETANDGENERALIZEDSEIZURESALTHOUGHFEWPATIENTSHAVEBECOMESEIZUREFREE)TISGENERALLYWELLTOLERATEDANDIMPLANTATIONISNOTTECHNICALLYDEMANDING

    4HEKETOGENICDIETISAHIGHFATLOWPROTEINANDVERYLOWCARBOHYDRATEDIETUSEDMOSTLYINCHILDRENWITHMEDICALLYINTRACTABLEEPILEPSY)TCANBEVERYEFFECTIVEINPATIENTS

    $R0ATRICK+WAN0ROF-ARTIN*"RODIE

  • 02/6)3)/./!2%

    WHOHAVEFAILEDNUMEROUSDRUGTRIALS4HEMAJORPROBLEMINITSUSEISADHERENCETOTHERESTRICTIVEDIETARYREGIME#L