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PREDICTINGMATERNALADHERENCEANDCHILDHEALTH STATUSINCHILDHOODEPILEPSY:ANEXPLORATORYMODEL By SOBHAP.FRITZ ADISSERTATIONPRESENTEDTOTHEGRADUATESCHOOL OFTHEUNIVERSITYOFFLORIDAINPARTIALFULFILLMENT OFTHEREQUIREMENTSFORTHEDEGREEOF DOCTOROFPHILOSOPHY UNIVERSITYOFFLORIDA 2003 Thisdocumentisdedicatedtomyhusband,parents,andsistersfortheirsupportand unconditionallove. Myfamily'semphasisregardingtheimportanceofeducationand helpingothershasguidedmeintoacareerforwhichIamwellsuited. Iwouldliketo especiallythankmyhusband,JasonJonFritz,foralwaysbelievinginmeandprovidinga securefoundationofwarmthandencouragement. ACKNOWLEDGMENTS Thisinvestigationcouldnothavebeencarriedoutwithoutthementorshipand directionofRobertGlueckauf,Ph.D.,thevaluablecontributionsofNicoleJagusztyn,the dedicationofPaulCarney,M.D.,andthestaffattheUniversityofFloridaPediatric NeurologyClinic. Iwouldliketoacknowledgemycommitteemembersfortheir scholarlyassistanceandguidance. Iwouldadditionallyliketothankmyfamilyfortheir supportandencouragementthroughoutthisproject. in TABLEOFCONTENTS Page ACKNOWLEDGMENTS iii ABSTRACT vii CHAPTER 1 INTRODUCTION 1 Epilepsy:AnOverview 1 Etiology 2 DiagnosingEpilepsy 3 ClassificationoftheEpilepsies 4 PartialSeizures 4 GeneralizedSeizures 6 Treatment 8 PsychologicalImpactofEpilepsy 9 AdherencetotheRegimen:AnOverview 10 AdherencetotheRegimen:Epilepsy 14 MaternalEmotionalFunctioning 18 2 AIMSANDSTUDYJUSTIFICATIONS 21 Purpose 21 StudyModel 22 Hypotheses 23 MaternalEmotionalDistress,Adherence,ChildHealthStatus 23 MaternalPerceptionsoftheTreatmentRegimen,Adherence,ChildHealth Status 23 ConditionandRegimen-relatedVariables,Adherence,ChildHealthStatus 23 DemographicCharacteristics,Adherence,ChildHealthStatus 24 3 METHODS 25 StudyDesign 25 Participants 26 Measures 29 ParticipantBackgroundInformation 29 MedicalChartInformation 30 IV ChildHealthStatusandAdherence 31 MaternalEmotionalDistress 32 4 RESULTS 35 PreliminaryAnalyses 35 PrimaryAnalyses 38 CorrelationsamongBackgroundVariables,Predictors,CriterionVariables 38 Hypothesis1:MaternalEmotionalDistress,Adherence,ChildHealthStatus...40 Hypothesis2:MaternalPerceptionsoftheTreatmentRegimen,Adherence, ChildHealthStatus 42 Hypothesis3:ConditionandRegimen-relatedVariables,Adherence,Child HealthStatus 46 Hypothesis4:DemographicCharacteristics,Adherence,ChildHealthStatus...49 ModelTesting 51 Predictionofadherence 51 Predictionofhealthstatus 52 SummaryofFindings 55 5 DISCUSSION 57 SampleCharacteristicsofDemographicsandMaternalDistress 57 Hypotheses 58 Hypothesis1:MaternalEmotionalDistress,Adherence,ChildHealthStatus...58 Hypothesis2:MaternalPerceptionsoftheTreatmentRegimen,Adherence, ChildHealthStatus 60 Hypothesis3:ConditionandRegimen-relatedVariables,Adherence,Child HealthStatus 61 Hypothesis4:DemographicCharacteristics,Adherence,ChildHealthStatus...63 ModelTesting 64 StudyStrengthsandLimitations 65 FutureDirections 67 ClinicalImplications 69 APPENDIX A BACKGROUNDINFORMATIONFORM-TIME1 71 B BACKGROUNDINFORMATIONFORM-TIME2 75 C MEDICALCHARTINFORMATIONFORM-TIME1 77 D MEDICALCHARTINFORMATIONFORM-TIME2 78 LISTOFREFERENCES 79 BIOGRAPHICALSKETCH 83 VI AbstractofDissertationPresentedtotheGraduateSchool oftheUniversityofFloridainPartialFulfillmentofthe RequirementsfortheDegreeofDoctorofPhilosophy PREDICTINGMATERNALADHERENCEANDCHILDHEALTHSTATUSIN CHILDHOODEPILEPSY:ANEXPLORATORYMODEL By SobhaP.Fritz December2003 Chair: RobertL.Glueckauf MajorDepartment: ClinicalandHealthPsychology Epilepsyisachronicillnessthattypicallybeginsinearlychildhood. Poor adherencetothemedicationregimencanresultinincreasedseizurefrequencyand severity. Youngchildrenarereliantontheirparentsfortheirdailyroutineand functioning. Thisissueisparticularlysalientforchildrenwithseizuredisorders,who relyontheirparentstotakeanti-convulsantmedication(s). Depressivesymptomatology andmaternalstresshavebeenassociatedwithnegativechildstatus. Maternalemotional factorssuchasdepressionandstressmayplayanimportantroleinadherenceto medicationforyoungerchildrenwithepilepsy. Inthecurrentstudy,weexaminedthe relationshipbetweenmaternaladherencetomedication(pillcountpercentage)andchild healthstatus(seizurefrequency,seizure-relatedemergencyroomvisits)forchildrenwith epilepsyandthefollowingfactors:maternalemotionaldistress(maternaldepression, maternalstress),demographics(familyannualincome,race,maternaleducationallevel), condition-relatedandregimen-relatedvariables(diseasetype,diseaseduration,typeand vn complexityofthemedicationregimen,concordancebetweenprescribedregimenand reportedregimen),andmaternalperceptionsofthetreatmentregimen(perceived efficacy,perceivedknowledge,perceiveddifficulty). Researchparticipantsincludedchildren,agesonethrougheleven,diagnosedwith epilepsyandwereapproachedforstudyparticipationattheUniversityofFlorida PediatricNeurologyClinic. Eighty-twomother-childdyadscompletedthestudy. Resultsindicatedthatasmaternalstress,parent-childdysfunction,andmaternal perceivedregimendifficultyincreased,childseizurefrequencysignificantlyincreased. Asmaternalperceivedregimenefficacylevelsincreased,childseizurefrequency significantlydecreased. Resultsrevealedthatasmaternalperceivedregimendifficulty levelsincreased,seizure-relatedemergencyroom(ER)visitssignificantlyincreased. As regimenconcordanceratesincreased,seizure-relatedERvisitssignificantlydecreased. Resultsdemonstratedthatasconcordanceratesincreased,pillcountincreased. Finalhierarchicalregressionanalysessuggestedthatparent-childdysfunctionwas predictiveofseizurefrequency. Maternalperceivedregimendifficultyratingsand concordanceratingsbetweentheprescribedandreportedregimenwerepredictiveof seizure-relatedERvisits. Concordanceratingsbetweentheprescribedandreported regimenwerepredictiveofpillcountpercentage. Thesefindingssuggestthatthe identificationofspecificvariablesthatinfluencematernaladherenceandchildhealth statusmaybeparticularlyhelpfulforchildrenwithepilepsy. vin CHAPTER 1 INTRODUCTION Epilepsy:AnOverview Epilepsyisachronicillnessthattypicallybeginsinearlychildhoodinwhichthe patientispronetoexperiencerecurrentepilepticseizures,wheretwoormoreattacks haveoccurred. Epilepsyisdefinedasamanifestationofanabnormalandexcessive synchronizeddischargeofasetofcerebralneurons(Shorvon,2000). Clinical manifestationsaresuddenandtransientandcanincludeawidevarietyofmotor,psychic, andsensoryphenomenawithorwithoutalterationinconsciousnessorawareness. The specificsymptomsthatoccurdependonthepartofthebraininvolved. Statusepilepticus isdefinedasaconditioninwhichepilepticseizurescontinue,orarerepeatedwithout consciousness,foraperiodof30minutesormoreandthisoccurrenceoftenrequiresa visittotheemergencyroom. Untreatedstatusepilepticuscanbefatal. Provokedseizureshaveanobviousandimmediateprecedingcause,suchasan acutesystemic,metabolic,ortoxicinsultoranacutecerebralevent(stroke,trauma,and infection). Provokedseizuresareoftenisolatedeventsanddonottendtorecuroncethe causeisremoved. Apersonisdescribedashavingactiveepilepsywhenatleastone seizurehasoccurredinthepreceding2-5years. Epilepsyissaidtobeinremissionwhen noseizureshaveoccurredinthepreceding2-5years(Appleton&Gibbs,1998).There areapproximately80casesofepilepsyper100,000peopleperyear,witharangeof50- 120cases. Nearly75per100,000adolescentsperyeargoontodevelopsomeformof epilepsy. Thecumulativeincidence,riskofanindividualdevelopingepilepsyinhisor 1 herlifetime,isbetween3%and5%. Thehighestincidenceratesareobservedin neonatesandyoungchildrenwithasecondpeakinoldage. Greaterthan50%ofseizures startinchildhoodandbeginbeforeage20(Browne&Holmes,2000). Theprevalenceofactiveepilepsyis5-10casesper1,000peopleperyear. Isolated seizures(firstandonly)occurinapproximately20peopleper100,000eachyear. The prevalenceofepilepsyinschoolagechildren(aged5-17years)is0.7%-0.8%. The prevalenceofepilepsyinadolescentsis6-7per1,000adolescents. One-thirdofall epilepsiesthatbegininchildhoodwillhavespontaneouslyremittedbypubertyandthis changeisusuallysustainedthroughoutadultlife. Epilepsyisrelativelystaticafterearly childhoodbutshowsatendencytoriseinoldage. Epilepsyismorecommonin developingcountriesandisthoughttobeassociatedwithpoorernutrition,poorer hygiene,higherprevalenceofinfectiousdiseases,andahigherproportionofchildrenin thepopulation(Appleton&Gibbs,1998). Etiology Congenitalandgeneticconditionsaremostcommonlyrelatedtoearlychildhood epilepsy. Geneticsarethoughttoplayanimportantroleinseizuredisorders. Hereditary andgeneticfactorsarerelatedtoidiopathicorprimaryepilepsysyndromesandpossibly insomesecondaryepilepsies,butknownsingle-genedisordersarerelatedtoepilepsyin only1-2%ofcases. Inolderchildrenandyoungadults,commoncausesofepilepsy includeinheritedpredisposition,hippocampalsclerosis,alcoholordrugabuse,and trauma. Vasculardiseaseisapredominantcauseofepilepsyintheelderly. Tumorsand infectionscanoccuratanyagebutmalignanttumorsaremorelikelytooccurafterage30 (Shorvon,2000). In70-75%ofchildhoodcasesofepilepsy,aspecificcausemaynotbe

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