Symptoms

• Symptomsmostfrequentlyrecordedasmoderateorseverewerememoryproblems,problemsconcentrating,fatigue,andsomnolence(Figure1)

Figure 1. Severity of Symptoms at First Evaluation (n=2,135)

SideEffects

• Themostfrequentlyrecordedsideeffectsperceivedbythepatientsasassociatedwiththeirtreatmentweresomnolence,fatigue,andmemoryimpairment(Table3)

Table 3. Side Effects Perceived to be Associated with Any Treatment (Recorded by ≥5% Patients; n=639)

Side effect (MedDRApreferredterm)

Patients n (%)

Somnolence 148(23.2)

Fatigue 110(17.2)

Memoryimpairment 88(13.8)

Dizziness 74(11.6)

Abnormalweightgain 67(10.5)

Depression 48(7.5)

Insomnia 39(6.1)

Nausea 36(5.6)

Headache 35(5.5)

Balancedisorder 32(5.0)

MedDRA,MedicalDictionaryforRegulatoryActivitiesSideeffectsduetomedicationandemergingsymptomsofdiseaseareoftendifficulttodistinguishandthereforemustbecarefullyevaluatedAsinglepatientmayhavereportedmorethanoneperceivedsideeffect

ResultsDemographicandEpilepsyCharacteristics• 3,073registeredpatientsrecordedadiagnosisofepilepsyandhadmultipleseizures(Table2):

– 69.5%completedthepresetsymptomschecklist

– 36.2%completedapatient-reportedoutcomes(PROs)assessment

– 20.8%patientsreported≥1sideeffecttheyperceivedasbeingtreatment-related

Table 2. Patient Demographic and Epilepsy Characteristics

Parametera Epilepsy population

N=3,073

Symptoms population

n=2,135

PRO and symptoms population

n=1,113

Gender,n 2,929 2,107 1,113

Female,% 71.5 73.2 72.3

Age,n 2,909 2,095 1,112

Mean(SD),years 37.8(12.7) 37.6(12.6) 37.8(12.3)

Ageclass,%

0–20years 7.3 7.1 6.2

21–50years 76.3 76.8 77.6

>50years 16.4 16.2 16.2

Timesincediagnosis,n 3,044 2,130 1,113

Mean(SD),years 17.7(14.1) 17.4(13.8) 17.7(13.6)

Ageatfirstseizure,n 2,906 2,095 1,112

Mean(SD),years 17.2(13.5) 17.1(13.3) 16.5(13.0)

Seizuretypeb,n 3,073 2,135 1,113

Generalized,% 23.7 28.3 30.7

Partial,% 23.7 29.1 33.6

Mixed,% 28.0 33.4 35.0

Unknown,% 24.7 9.2 0.6

AEDtreatmentc,d,n 1,773 1,593 1,009

Monotherapy,% 51.4 50.3 47.7

Polytherapy,% 48.6 49.7 52.3

NewerAEDsonly,% 56.4 56.4 56.3

OlderAEDsonly,% 19.8 19.4 17.9

CombinationofnewerandolderAEDs,% 23.8 24.2 25.8

Co-morbiditiese,n 2,271 1,769 986

Patientswith≥1co-morbidcondition,% 53.9 54.8 55.7

Migraine,% 28.1 28.6 28.4

Anxietydisorder,% 17.6 17.9 18.1

Majordepressivedisorder,% 13.9 14.6 15.4

Hypertension,% 10.5 10.7 11.4

AED,antiepilepticdrug;PRO,patient-reportedoutcome;SD,standarddeviationaNotallparameterswerecompletedbyallpatientsbSeizuretypeinlifetimecPatientsthatreported≥1AEDdMembersofthePatientsLikeMeEpilepsyCommunitywhodonotself-reportAEDtreatmentmaytakenoAED(s)ormayhavenotreportedtheirtreatmenteCo-morbiditiesrecordedby≥10%ofthepatientsfromapresetco-morbiditychecklist

Introduction• PatientsLikeMe,whichhostsafreeonlinecommunityforpatientswithepilepsy,wasdevelopedinpartnershipwithUCBandlaunchedinJanuary2010

• Previousdataanalyses(March20101,September20102,andMay20113,4)providedinsightsintothecharacteristicsandexperiencesofuserswithepilepsy

MethodsStudyPopulation•CommunitymemberswhologgedinbetweenJanuary2010–November2011andreporteddiagnosisofepilepsyandmultipleseizures

DataCollected• Demographics,epilepsycharacteristics,symptoms(presetsymptomschecklist;Table1;Figure1),andsideeffectspatientsperceivedtoberelatedtotheirtreatment

Patient-Reported Outcomes

•QOLIE-31/P(QualityofLife[QoL]inEpilepsy)totalscore5:Epilepsy-specificqualityoflifeinstrument(scorerange=0–100;100representsbesthealthstatus)

• HADS(HospitalAnxietyandDepressionScale):Anxietyanddepressioninstrument6(scorerange=0–21;0representsbestanxietyordepressionstatus)

• EQ-5D(Euro-QoL5dimensions)utilityscore7:Generichealthstatusinstrument(scorerange=0–1;1representsbesthealthstatus)

LogisticRegressionAnalysis•MultivariatelogisticregressionanalysistoidentifyvariablesassociatedwithpoorHRQoL(<Quartile1[Q1]ofQOLIE-31/PtotalscoreorEQ-5Dutilityscore;Table1)

Table 1. Variables Included in Multivariate Logistic Regression Analysis

Variable Levels (vs reference level)

SociodemographicAge >25–50,>50yearsvs0–25 yearsGender FemalevsMaleBodymassindex 0–18.5,>25vs>18.5–25Epilepsy-relatedDurationsincediagnosis 0–1,>1–10yearsvs>10 yearsTypeofepilepsysyndrome Focal,UnidentifiedvsGeneralized

SeizuresOccurrenceofseizuresin4weeksprecedingPROassessment

TC,Non-TC,MissingvsNone

SymptomsSeverityofeachsymptomfromthesymptomchecklist(anxiety,depression,fatigue,headache,insomnia,memoryproblems,pain,problemsconcentrating,andsomnolence)

Moderate&severevsNone & mild

AED treatmentTypeofcurrentAEDs Combinationofoldera&newerb,

Newermonotherapy,Newerpolytherapy,Oldermonotherapy,MissingvsOlder polytherapy

Side effectsModerateandseveresideeffectsin4weeksprecedingPROassessment

YesvsNo

Co-morbiditiesNumberofco-morbidities 1,2+,Missingvs0

AED,antiepilepticdrug;PRO,patient-reportedoutcome;TC,tonic-clonicaOlderAEDs:acetazolamide,benzodiazepines,carbamazepine,ethosuximide,methsuximide,phenobarbital,phenytoin,sultiame,valproicacidbNewerAEDs:felbamate,gabapentin,lacosamide,levetiracetam,lamotrigine,oxcarbazepine,pregabalin,rufinamide,retigabine,tiagabine,topiramate,vigabatrin,zonisamide

EQ-5D

• 263/1,113(23.6%)patientsincludedinthemultivariatelogisticregressionanalysiswereclassifiedashavingpoorHRQoL(EQ-5DUtilityScore<Q1)(Figure4)

Figure 4. Predictors of Low EQ-5D Utility Score (<Q1)a

CorrelationBetweenQOLIE-31/PTotalScoreandHADSSubscores

•QOLIE-31/PtotalscorewashighlycorrelatedtoHADSAnxiety(R=0.6214)andDepression(R=0.6919)scores(Figure2)

Figure 2. Correlation Between QOLIE-31/P Total Score and HADS Anxiety and Depression Scores (n=1,113)

PredictorsofPoorHealth-RelatedQualityofLife

QOLIE/31P

• 279/1,113(25.1%)patientsincludedinthemultivariatelogisticregressionanalysiswereclassifiedashavingpoorHRQoL(QOLIE-31/Ptotalscore<Q1)(Figure3)

Figure 3. Predictors of Low QOLIE-31/P Total Score (<Q1)a

PatientsLikeMe® Epilepsy Community: Factors Affecting Quality of LifeSimonBorghs1,ChristinedelaLoge1;SvetlanaDimova1;TracyDurgin2;GeorgePhillips3;KnutMueller4;CandiceLafosse5;PaulWicks6

1UCBPharma,Brussels,Belgium;2UCBPharma,Smyrna,GA,USA;3UCBPharma,Raleigh,NC,USA;4UCBPharma,Monheim,Germany;5KeyrusBiopharma,Levallois-Perret,France;6PatientsLikeMeInc,Cambridge,MA,USA

AcknowledgementsTheauthorswouldliketothankallthepatientswhohavecontributedtothisworkbysharingtheirdataSallyCotterill,PhD(QXVCommunications)assistedwithposterdevelopment,whichwasfundedbyUCBPharmaArtworkwassupportedbyQXVCommunications,partoftheInforMedgroup

DisclosureSupportedbyUCBPharmaSimonBorghs,SvetlanaDimova,TracyDurgin,GeorgePhillipsandKnutMuellerareemployeesofUCBPharmaSvetlanaDimovaownsstock/stockoptionsinthecompanyChristinedelaLogewasanemployeeofUCBPharmaatthetimethatthestudywascarriedoutCandiceLafosseisanemployeeofKeyrusBiopharma,Levallois-Perret,FrancePaulWicksisanemployeeofPatientsLikeMeandownsstockoptionsinthecompany.ThePatientsLikeMeR&DteamhasreceivedresearchsupportfromAbbott,Acorda,Avanir,Biogen,Johnson&Johnson,Merck,Novartis,SanofiandUCB

References1. delaLogeetal.AES2010,Abstract1.305,www.aes.org2. delaLogeetal.AES2011,Abstract2.271,www.aes.org3. Dimovaetal.AbstractP01.062,AAN2012,Neurology2012;78(Suppl.1);www.neurology.org4. delaLogeetal.ValueHealth2012;15:A147–A1485. CramerJA,etal.Epilepsia1998;39:81–86. ZigmondAS,SnaithRP.ActaPsychiatrScand.1993;67:361–707. TheEuroQolGroup.HealthPolicy1990;16:199–208

Conclusions • BasedonreportsbyusersofthePatientsLikeMeEpilepsyCommunity,memoryproblems,fatigueandsomnolencewerethemostfrequentlyoccurringsymptomsandperceivedtreatment-relatedsideeffects

• ThemostpredictivefactorsforpoorHRQoL(oddsratio>2;p<0.05)differedaccordingtotheinstrumentused:

– QOLIE-31/P:moderate/severeproblemsconcentrating,depression,memoryproblems,andsideeffects;occurrenceofgeneralizedtonic-clonicseizuresandepilepsyduration≤1year

– EQ-5D:pain,depressionandco-morbidities

• VariationsinthepredictorshighlightdifferencesinthecontentofQOLIE-31/PandEQ-5D–eachcoversdifferentdimensionsofpatienthealthandusesdifferentweightingtoderivetheirsummaryscore

• Theseresultssuggestthataholisticapproachnotlimitedtoseizurecontrolshouldbeconsideredwhentreatingpeoplewithepilepsy

P03.122

Per

cent

of p

atie

nts

None (1) Mild (2) Moderate (3) Severe (4) Mean

Mea

n se

verit

y

0

10

20

30

40

50

60

70

80

90

100

AnxietyFatigue PainProblemsconcentrating

HeadachesDepressionMemoryproblems

Somnolence Insomnia

42.4

26.1

14.9

30.132.9

16.1

50.0

18.3

31.8

25.2

32.5

24.9

33.4 30.4

30.1

23.5

31.8

34.7

20.3

28.3

37.7

27.7 25.0

37.1

19.0

35.9

25.2

12.013.0

22.6

8.711.8

16.7

7.514.1

8.3

1

4

3

2

100

90

80

70

60

50

40

30

20

10

0

0 105 15 5 15

HADS Anxiety score

R2 = 0.3861 R2 = 0.4787

QO

LIE

-31/

P T

otal

sco

re

QO

LIE

-31/

P T

otal

sco

re

HADS Depression score

20

100

90

80

70

60

50

40

30

20

10

0

0 10 20

Variable Patients (n)

Duration since diagnosis 0–1 years 104

>1–10 years 349

>10 years 660

Anxiety None/mild 742

Moderate/severe 371

Moderate and severe side effectsduring last 4 weeks

No 1019Yes 94

Depression

aMedian (Q1–Q3) QOLIE-31/P total score: 51.0 (37.3–65.6)Wald Chi-Square of complete logisitic regression model: 235.41 (p<0.0001)p-values: *<0.05; **<0.01; ***<0.001AED, antiepileptic drug; PRO, patient-reported outcome

None/mild 718

Moderate/severe 395

Level(reference level)

Fatigue None/mild

Moderate/severe

None/mild

Moderate/severe

Memory problems

560

553

485

628

Odds ratio (95% confidence interval)

Problems concentrating None/mild

Moderate/severe

547

566

Type of AEDs Older polytherapy

Combination of older and newer

38

268

No AED

Newer monotherapy

63

Missing 26

340

Newer polytherapy

Older monotherapy

236

142

No seizuresOccurence of seizures in 4 weeks preceding PRO assessment

458

124

Missing

****

**

*

***

***

*

*

**

*

***

****

104

≥1 tonic-clonic seizure

≥1 seizure (not tonic-clonic) 427

0 2 4 6

Variable Patients (n)

Epilepsy syndrome Generalized epilepsy 392

Focal epilepsy 465

256

Number of co-morbidities 0 433

1 274

2+ 275

Missing 131

Anxiety None/mild 742

Moderate/severe 371

Depression None/mild 718

Moderate/severe 395

Unclassified

Level(reference level)

Pain None/mild

Moderate/severe

840

273

Insomnia None/mild

Moderate/severe

768

345

Problems concentrating None/mild

Moderate/severe

547

566

Odds ratio (95% confidence interval)

*

**

***

***

*

***

***

*

*

aMedian (Q1–Q3) EQ-5D utility score: 0.8 (0.7–0.8)Wald Chi-Square of complete logisitic regression model: 234.48 (p<0.0001)p-values: *<0.05; **<0.01; ***<0.001

6420 8

Posterpresentedatthe65thAmericanAcademyofNeurologyAnnualMeeting,SanDiego,CA,USA,16–23March2013

Objective• ToassesstheimpactofepilepsyonthequalityoflifeofmembersofthePatientsLikeMeEpilepsycommunity