Epilepsia, 48(10):1920–1925, 2007Blackwell Publishing, Inc.C© 2007 International League Against Epilepsy

Initial Perspectives from Midwestern Neurologists: EpilepsyPatients’ Barriers and Motivators for Seeking Treatment

∗Suzanne R. Hawley, ∗Angelia M. Paschal, ∗Elizabeth Ablah, ∗Theresa St. Romain, †Kore Liow,and ∗Craig A. Molgaard

∗Department of Preventive Medicine and Public Health, University of Kansas School of Medicine – Wichita; and †Departments ofInternal Medicine, Psychiatry, and Neurology, University of Kansas School of Medicine – Wichita, Wichita, Kansas, U.S.A.

Summary: Purpose: Epilepsy is a chronic neurological illnessthat affects 2.7 million people in the United States, but remainspoorly understood. Care providers may not recognize their pa-tients’ need for epilepsy information, contributing to treatmentbarriers, such as stigmatization and poor patient-provider com-munication.

Methods: The current study piloted a survey of epilepsy-related attitudes and perceptions of 33 Midwestern neurologists.The survey included questions about perceived barriers to andmotivators for treatment, thoughts on misperceptions of epilepsyin the community and in the patient population, and potential in-terventions to address misperceptions.

Results: Respondents perceived misinformation and lack ofknowledge in patients and the general public that could be con-tributing to the barriers that exist to treat patients adequately.Respondents suggested potential methods for addressing mis-perceptions effectively.

Discussion: This study of neurologists’ perceptions aboutepilepsy barriers and needs provides an important perspe-ctive for the development of interventions to address misper-ceptions and barriers among patients and the public. KeyWords: Epilepsy—Care providers—Health disparities—Treatment—Barriers—Communication—Motivators—Socialsupport.

Epilepsy is a chronic neurological illness that affects2.7 million people in the United States (Centers for Dis-ease Control and Prevention, 2005). Approximately 3%of the United States population will be diagnosed withepilepsy at some point (Centers for Disease Control andPrevention, 2005). Multiple studies across cultures havefound that, despite its prevalence, epilepsy is poorly un-derstood by people with this disorder (Long et al., 2000;Poole et al., 2000; Crawford and Hudson, 2003; Khan etal., 2004; Le et al., 2006). This also includes the generalpublic (Kim et al., 2003) as well as health professionals(Al-Adawi et al., 2001; Marchetti et al., 2004). Negativeportrayals in the media contribute to this situation (Coyleand Brown, 1997). As a result, significant barriers to suc-cessful treatment persist, including stigmatization, limitedpatient knowledge of the disease, and poor communica-tion with the health care provider (DiIorio et al., 2003;Swarztrauber, 2004; Paschal et al., 2005; Birbeck, 2006),as well as inaccurate patient perception of adherence totreatment (Buelow and Smith, 2004).

Accepted March 13, 2007.Address correspondence and reprint requests to Dr. Suzanne R. Haw-

ley, University of Kansas School of Medicine – Wichita, 1010 NorthKansas, Wichita, KS 67214-3199. E-mail: shawley@kumc.edu

doi: 10.1111/j.1528-1167.2007.01137.x

Because of the persistence of such barriers to care, di-agnosed epilepsy or even repetitive seizures can greatlyinfluence both health and quality of life (Mills et al., 1997;Pugh et al., 2005; Strine et al., 2005). Repeatedly, re-searchers have found that psychosocial factors can con-tribute enormously to patient (Suurmeijer et al., 2001;Paschal et al., 2005; Sander, 2005) and patient families’(Ryan et al., 2003) views about a person with epilepsy’slevel of health or ability to adhere to treatment. One suchfactor is a patient’s relationship with the care provider(Buck et al., 1996; Kyngas, 2003). A provider who under-stands a patient’s epilepsy experience has the opportunityto build confidence and motivation and thereby ensuresuccessful treatment (Kyngas, 2003; Sander, 2005). Pre-vious research has found that people with epilepsy wantto learn about their condition and would like more infor-mation from their care providers (Chappell and Smith-son, 1998; Poole et al., 2000). However, continuing mis-perceptions about prognosis and treatment indicate thatthere is a disjunction between patient and provider be-liefs about knowledge needs relating to epilepsy treatment(Choi-Kwon et al., 2001).

In order to close this gap and help providers better un-derstand how to address barriers to epilepsy treatment,provider opinions on epilepsy must be assessed. Previous

1920

NEUROLOGISTS’ TREATMENT PERSPECTIVES 1921

studies compared perceptions of patients and careproviders (DiIorio and Manteuffel, 1995; Choi-Kwon etal., 2001; Aldenkamp and Van Donselaar, 2003), assessedknowledge and attitudes of general practitioners (Frith etal., 1994; Averis, 1997; Thapar et al., 1998; Thapar andRoland, 2005), and compared different physician attitudes(including general practitioners and neurologists) (Vogtleet al., 2007). In general, such studies find a need for im-proved education and destigmatization even among healthprofessionals, a finding confirmed by American epilepsypatient perceptions (Paschal et al., 2005). To date, how-ever, most studies of care providers have been conductedin the United Kingdom or Australia. Current perspec-tives from American care providers are lacking, especiallythose of specialized neurological care providers. The cur-rent study piloted a survey of epilepsy-related perceptionsof Midwestern neurologists in the United States. Learningabout these providers’ perceptions gives a new perspec-tive that can help direct future efforts to address treatmentbarriers and needs.

METHODS

ParticipantsThe survey was sent to 185 neurologists from Kansas,

Nebraska, Oklahoma, and Western Missouri. Of this pool,165 (89%) were male and 20 (11%) were female. Thirty-three neurologists completed the survey (95% male, 5%female).

InstrumentThe pilot survey included 21 questions regarding the

clinical data of patients the neurologists serve, as well asqueries about what they perceived as barriers and moti-vators for patients seeking treatment. The survey also in-cluded questions about the respondents’ thoughts on mis-perceptions of epilepsy in the community and in the patientpopulation, as well as what could be done to address these(Table 1).

On several survey questions about attitudes and needs,neurologists were asked to rank the multiple answers pro-vided by order of importance (on a scale of 1–5, with1 being the neurologist’s judgment of the best answer).There was inconsistency in the way in which respondentschose to answer these questions, with some ranking mul-tiple options as a top choice, some ranking only their topthree or five choices, and some ranking all answers pro-vided. When the results were tabulated for this summary,only rankings of “1” were recorded and counted towardtotals in order to create a consistent picture of respondents’perceptions.

ProcedureThis pilot survey about epilepsy was administered to

neurologists in Kansas, Nebraska, Oklahoma, and West-

TABLE 1. Attitudinal items from survey instrument

Based on your work with epilepsy patients, what are the main barriersto those with epilepsy seeking health services?

In your opinion, what is the strongest motivator for those with epilepsyto seek health services?

Do you, as a physician, feel the public is adequately informed aboutepilepsy?

In your opinion, what are the most common misconceptions regardingepilepsy among the public?

What, in your opinion, would be the most effective way to educate thegeneral public on epilepsy?

Do you feel patients with epilepsy are knowledgeable about theircondition?

In your opinion, what are the most common misconceptions regardingepilepsy among affected patients?

What could be done to improve patients’ awareness of their condition?What kinds of awareness should be promoted in an epilepsy awareness

campaign?In your community, do you perceive stigma directed toward those with

epilepsy?If yes, do you believe this stigma alters patients’ self-perceptions and

willingness to seek out and adhere to treatments?

ern Missouri. A total of 185 surveys were mailed to neu-rologists, along with a postage-paid return envelope anda cover letter explaining the study’s purpose of gatheringperceptions about epilepsy treatment. In recognition of thetypically low response rates of physician surveys (15% to25% has been found by Cowan et al., 2005; Krause et al.,2005), participants were solicited through mailing listsobtained from the state medical societies of Kansas, Ok-lahoma, and Nebraska, which were then cross-referencedwith other professional organizations in order to reachthe greatest number of potential respondents. Descriptivestatistics were calculated for participant demographics andresponses.

RESULTS

Participant demographicsThirty-three completed surveys were returned by the

participants, for an 18% response rate. Ninety-five percent(95%) of the respondents were male and 5% were female,a ratio fairly close to that of the full sample (89% male,11% female). More than one-half (52%) of the partici-pants represented a subspecialty in neurology: Pediatrics(9%), Epileptology (8%), Headache (5%), Clinical Neu-rology (5%), Neurolab/TBI (5%,) Neuromuscular (5%),Epilepsy Surgery (5%), EEG (5%), and Stroke (5%). Theremaining 48% did not indicate a subspecialty area. Mostof the neurologists were Caucasian (63%). Other ethnicgroups included Asian American (23%), Hispanic (9%),and other (5%).

Epilepsy patient characteristicsRespondents reported characteristics of their epilepsy

patients. Approximately 2/3 (66%) of the respondents

Epilepsia, Vol. 48, No. 10, 2007

1922 S. R. HAWLEY ET AL.

reported that 0–24% of their patients had epilepsy.Twenty-five percent had 25–49% patients with epilepsy,and the remaining 9% of respondents had 75–100% pa-tients with epilepsy. Neurologists indicated the most com-mon types of epilepsy seen among their patients were com-plex partial (31.8%), partial with secondary generalization(31.2%), tonic–clonic (17.5%), simple partial (9.7%), ab-sence (6.5%), and myoclonic (3.3%).

Gender of their patients appeared, on average, to beevenly distributed (50% female, 50% male). Patient ageswere distributed as follows: 13% ages 1–17 years, 26%ages 18–34 years, 32% ages 35–54 years, and 29% ages55 years or older. Ethnic background of the patientswas primarily Caucasian (77%). African Americans werethe largest minority group (12%), followed by Hispanics(9%), and other groups (2%).

Most neurologists also reported treating some epilepsypatients with low income (less than $25,000 per house-hold) or without health insurance. Thirty-two percent(32%) had 0–24% low-income epilepsy patients, 48%of respondents saw 25–49% low-income patients, and20% of respondents saw 50–74% low-income patients. Ingeneral, the percentage of insured epilepsy patients washigher; only 3% of respondents had fewer than 25% in-sured patients. Nineteen percent (19%) reported that 25–49% of their patients were insured, 42% reported that 50–74% of their patients were insured, and 36% reported that75–100% of their patients were insured.

Epilepsy awareness needs and solutions for the publicA portion of the survey was devoted to assessing neurol-

ogists’ perceptions about epilepsy awareness and knowl-edge among the general public. Respondents were askedto rank responses according to their judgment of the an-swers’ importance. Because some respondents selectedmore than one option as a top-ranked choice, responsetotals exceed 100%. All response data is reported inTable 2.

Eighty-one percent (81%) of the neurologists be-lieved that the public was not adequately informedabout epilepsy. When asked about misperceptions aboutepilepsy among the public, neurologists most frequentlyranked “It’s hereditary” (53%) and “Is a mental illness”(20%) as the most commonly held misperceptions. Whenasked what they thought would be the most effective waysto educate the general public about epilepsy, a televi-sion campaign was selected most often (94%) as the bestmethod. Second to a television campaign was a work-place program, ranked by 25% of neurologists as the bestmethod to educate the public.

Epilepsy awareness needs and solutions for epilepsypatients

When asked whether epilepsy patients were knowledge-able about their condition, 44% of neurologists reported

that they thought patients were not knowledgeable. All re-spondents reported their beliefs about patient perceptions.Forty-six percent (46%) of neurologists believed that oneof the most common misperceptions among patients wasthinking that epilepsy “precludes living a normal life.” Thesecond most commonly indicated misperception, “surgeryis too unpredictable,” was selected by 35% of neurologists.

To improve patients’ awareness of their condition, 77%of neurologists ranked a television campaign as the mosteffective method, as opposed to the 94% who believedthis would be an effective way to educate the public. Thesecond most commonly chosen option to increase patientawareness was an educational brochure, with 37% of re-spondents selecting this option. Almost all respondents(97%) identified a need for some form of awareness cam-paign. In support of this recognition, over half of the neu-rologists (57%) gave “general information” a rank of “1”(“most important” topic to be addressed). The type of in-formation second most commonly top-ranked was “reac-tions to seizures” (46% of the neurologists). “Origins ofepilepsy” was the third most commonly top-ranked typeof information (42%), followed by “social support” (39%)and “reactions to epilepsy” (24%).

Barriers to and solutions for treatmentNeurologists were asked to report if they perceived

epilepsy stigma in their communities. Fifty-five percent(55%) of neurologists detected stigma in their commu-nity, and of those 55%, 84% believed such stigma-alteredpatients’ willingness to seek out and adhere to treat-ments. To determine whether other barriers affected treat-ment, neurologists were asked to rank various barri-ers for those with epilepsy seeking treatment, includingstigma/discrimination. Neurologist indicated that they be-lieved patients experienced “low income” (top-rated by55% of respondents), “lack of health insurance” (48%),and “transportation” (24%) as the most common barriersto epilepsy patients seeking health services.

Fifty percent of respondents (50%) reported that only0–24% of their patients did not adhere to treatment, while41% had 25–49% patients who did not adhere to treat-ment, and 9% had 50–74% patients who did not adhereto treatment. In addressing ways to improve adherence totreatment, neurologists reported what they believed to bethe most effective motivators for patients to seek healthservices. Seventy-one percent (71%) indicated either “In-terest in improved functional abilities” or “Intensity orfrequency of seizures” as their perception of the top mo-tivator for those with epilepsy to seek services.

DISCUSSION

The current study of neurologists’ perceptions aboutepilepsy barriers and needs provides a much-needed

Epilepsia, Vol. 48, No. 10, 2007

NEUROLOGISTS’ TREATMENT PERSPECTIVES 1923

TA

BL

E2.

Res

pond

ents

’to

p-ra

nked

answ

ers

onat

titu

dina

lite

ms

from

surv

ey(N

=33

)∗Fo

urth

mos

tSi

xth

mos

tSe

vent

hm

ost

Eig

hth

mos

tSe

cond

mos

tT

hird

mos

tco

mm

onFi

fth

mos

tco

mm

onco

mm

onco

mm

onA

ttitu

dina

lite

mM

ostc

omm

onto

p-ra

nked

com

mon

top-

rank

edco

mm

onto

p-ra

nked

top-

rank

edto

p-ra

nked

(Res

pond

ents

’to

p-ra

nked

resp

onse

top-

rank

edre

spon

sere

spon

seto

p-ra

nked

resp

onse

resp

onse

resp

onse

resp

onse

perc

eptio

ns)

resp

onse

(per

cent

-ag

e)(p

erce

ntag

e)(p

erce

ntag

e)(p

erce

ntag

e)(p

erce

ntag

e)(p

erce

ntag

e)(p

erce

ntag

e)(p

erce

ntag

e)

Mos

tcom

mon

mis

conc

eptio

nsre

gard

ing

epile

psy

amon

gth

epu

blic

Itis

here

dita

ry(5

3)It

isa

men

tali

llnes

s(2

0)Pe

rson

sw

ithep

ileps

ysh

ould

beso

cial

lyav

oide

d(1

2)

Itis

cont

agio

us(8

)It

isan

“exc

use”

for

poor

beha

vior

(6)

N/A

N/A

N/A

Mos

teff

ectiv

ew

ays

toed

ucat

eth

ege

nera

lpub

licon

epile

psy

Tele

visi

onca

mpa

ign

(94)

Wor

kpla

cepr

ogra

m(2

5)E

xten

sion

serv

ices

/age

nts

(11)

Info

rmat

ion

inge

nera

lpr

actit

ione

rof

fice

s(1

0)

Edu

catio

nal

broc

hure

(5)

N/A

N/A

N/A

Mos

tcom

mon

mis

conc

eptio

nsre

gard

ing

epile

psy

amon

gaf

fect

edpa

tient

s

Itpr

eclu

des

livin

ga

norm

allif

e(4

6)Su

rger

yis

too

unpr

edic

tabl

e(3

5)

Ori

gins

ofep

ileps

yar

em

isun

ders

tood

(28)

Surg

ery

isto

oex

pens

ive

(27)

Tre

atm

ents

are

too

expe

nsiv

e(2

2)Ph

ysic

ians

don’

tha

vetim

eto

answ

erqu

estio

ns(1

3)

Itis

here

dita

ry(7

)IN

/A

Met

hods

toim

prov

epa

tient

s’aw

aren

ess

ofth

eir

cond

ition

Tele

visi

onca

mpa

ign

(77)

Edu

catio

nal

broc

hure

(37)

Com

mun

ityep

ileps

ylia

ison

nurs

e(3

0)

Ext

ensi

onse

rvic

es/a

gent

s(2

2)

Info

rmat

ion

inge

nera

lpr

actit

ione

rof

fice

s(1

1)

N/A

N/A

N/A

Type

sof

awar

enes

sto

bepr

omot

edin

anep

ileps

yca

mpa

ign

Gen

eral

info

rmat

ion

(57)

Rea

ctio

nsto

seiz

ures

(46)

Ori

gins

ofep

ileps

y(4

2)So

cial

supp

ort(

39)

Rea

ctio

nsto

epile

psy

(24)

N/A

N/A

N/A

Mai

nba

rrie

rsto

epile

psy

patie

nts

seek

ing

heal

thse

rvic

es

Low

inco

me

(55)

Lac

kof

heal

thin

sura

nce

(48)

Tra

nspo

rtat

ion

(24)

Litt

leed

ucat

ion

(23)

Stig

ma/

disc

rim

inat

ion

(18)

Rur

alre

side

ncy

(17)

Lac

kof

info

rmat

ion

abou

ttre

atm

ent

(12)

Rac

e/et

hnic

ity(7

)

Stro

nges

tmot

ivat

ors

for

epile

psy

patie

nts

seek

ing

heal

thse

rvic

es

Impr

oved

func

tiona

lab

ilitie

s(7

1)(t

ie)

Inte

nsity

orfr

eque

ncy

ofse

izur

es(7

1)(t

ie)

Mor

eed

ucat

ion

(41)

Hig

hin

com

e(2

9)R

educ

ing

stig

ma/

disc

rim

inat

ion

(27)

Info

rmat

ion

abou

tep

ileps

yan

dtr

eatm

ent(

16)

(tie

)

Ade

quat

ehe

alth

insu

ranc

e(1

6)(t

ie)

Soci

al/f

amili

alsu

ppor

t(5)

∗ Bec

ause

som

ere

spon

dent

sse

lect

edm

ore

than

one

optio

nas

ato

p-ra

nked

choi

ce,r

espo

nse

tota

lsm

ayex

ceed

100%

.

Epilepsia, Vol. 48, No. 10, 2007

1924 S. R. HAWLEY ET AL.

perspective from American neurological care providersthat could contribute to the development of interventions.For example, several myths of epilepsy were reported thatcould be contributing to the barriers that exist to treat pa-tients adequately; providers could take care to addressthese issues specifically when providing information totheir patients. While the general public is often thought tohave misperceptions about epilepsy, one sobering findingfrom this study is that 44% of neurologists believe thatepilepsy patients themselves have a lack of understand-ing about their illness. Whether this is accurate or not,it indicates a wide communication gap between epilepsypatients and their care providers and a significant need foreducation on both sides.

Important to consider in formulating educational inter-ventions are issues related to cultural competency (Paschalet al., 2005), the ability to deliver effective care to pa-tients of all races and ethnicities. Such considerations werehinted at by the neurologists’ concern about stigma andinadequate income, health insurance, and transportationas significant barriers to effective treatment. This lack ofknowledge and resources could lead to lower social or fam-ily support and discrimination, also seen by providers assignificant barriers to treatment. Previous work by Paschalet al. (2005) found that similar issues are of great concernto minority patients with epilepsy. Because patients andneurologists have both been found to recognize its impor-tance, including culturally competent information is likelyto improve the chance that an intervention will be acceptedby the target population.

Exactly what form such an intervention should take isan area requiring further research. The respondents in thisstudy believed that television campaigns were most likelyto reach both patients and the public. In fact, previous re-search has borne out the ability of television campaigns toinform both the public and a target population (Bernhardtet al., 2001; Palmgreen et al., 2001; Piniewski-Bond et al.,2003; Haviland et al., 2004), though to date this has notbeen tested with epilepsy-related topics. Previous researchhas, however, confirmed the existence of patient-providercommunication gaps in terms of topics patients would liketo learn more about versus topics their providers believethey need knowledge on (Choi-Kwon et al., 2001). Pa-tients also have been found to report stigma differentlythan did the neurologists in the current study (DiIorio etal., 2003). It is therefore possible that patients and mem-bers of the general public may have different educationalpreferences or concerns than those reported by the neurol-ogists in this survey. For example, Buck et al. (1996) foundepilepsy patients’ satisfaction with care to depend mainlyon their relationship with their care provider. The neu-rologists’ responses should be regarded as an importantbeginning in an ongoing information-gathering process,with the end goal being to achieve congruency between pa-tients’ perceptions and their care providers’ beliefs about

those perceptions. Educational interventions should focuson improving patient-provider communication, as well asimparting knowledge.

While the current study had a low response rate of 18%,this is not atypical for surveys targeting physicians (Cowanet al., 2005; Krause et al., 2005), and the specialized na-ture of the targeted population decreases the likelihood ofselection bias among respondents. Inconsistent rankingmethods by respondents were accounted for by analyzingonly top-ranked choices. Respondent demographics mayrepresent a limitation of the study, as a comparison of thesample to the national demographic profile of neurologistsreveals that the sample’s racial and ethnic characteristicswere proportional to, but more diverse than the national av-erage. The respondent sample was 63% Caucasian, 23%Asian, 9% Hispanic, and 5% other race/ethnicity, whileacross the United States, neurologists are approximately81% Caucasian, 17% Asian, 5% Hispanic, and 3% otherrace/ethnicity (national responses exceed 100%) (Henryet al., 2005). Women represented 5% of the respondentsample, while women represented 11% of the Midwesternsample from which respondents were drawn. Nationwide,approximately 22% of neurologists are women (Henryet al., 2005). Overall, though, these survey findingsdo provide health care practitioners and educatorswith a much-needed physician perspective on increas-ing access and treatment for a potentially debilitatingdisease.

Neurologists’ perceptions are, however, only one of sev-eral perspectives needed for a complete understanding ofhow to decrease barriers and increase motivators for treat-ment. Different populations may perceive the disorder dif-ferently; previous research has certainly found that differ-ent types of physicians do (Vogtle et al., 2007). Furtherstudy is needed of the perceptions of epilepsy patientsthemselves, as well as members of the general public, tounderstand the means by which each group would be mostreceptive to receiving information that would decrease thepublic’s stigmatization and increase patients’ motivationto seek treatment for the condition. Surveys of these pop-ulations should include attitudinal and communication-related items similar to those asked in the present study.Additional areas of research could include patient percep-tions of patient-provider communication and perceivedbenefits of destigmatization. Ultimately, eliminating bar-riers to the effective treatment of epilepsy will need to oc-cur on multiple levels – through improved patient-providercommunication and educational materials that are acces-sible to all regardless of income, language, or literacylevel.

Acknowledgments: The authors would like to acknowledgethe physician participants in this study. We would also like tothank Ms. Bethany Kabler for her assistance in the developmentof this manuscript.

Epilepsia, Vol. 48, No. 10, 2007

NEUROLOGISTS’ TREATMENT PERSPECTIVES 1925

REFERENCES

Al-Adawi S, Al-Ismaily S, Martin R, Al-Naamani A, Al-Riyamy K, Al-Maskari M, Al-Hussaini A. (2001) Psychosocial aspects of epilepsyin Oman: attitude of health personnel. Epilepsia 42:1476–1481.

Aldenkamp AP, Van Donselaar C. (2003) Treatment of epilepsy in gen-eral hospitals: do patients and neurologists agree on success or fail-ure? Seizure 12:523–528.

Averis AK. (1997) Epilepsy management: the general practitioner’s per-spective. Seizure 6:81–85.

Bernhardt JM, Sorenson JR, Brown JD. (2001) When the perpetratorgets killed: effects of observing the death of a handgun user in atelevised public service announcement. Health Education Behavior28:81–94.

Birbeck G. (2006) Interventions to reduce epilepsy-associated stigma.Psychology, Health and Medicine 11:364–366.

Buck D, Jacoby A, Baker GA, Graham-Jones S, Chadwick DW. (1996)Patients’ experiences of and satisfaction with care for their epilepsy.Epilepsia 37:841–849.

Buelow JM, Smith MC. (2004) Medication management by the personwith epilepsy: perception versus reality. Epilepsy Behavior 5:401–406.

Centers for Disease Control and Prevention. (2005) Epilepsy: one of thenation’s most common disabling neurological conditions. RetrievedJanuary 5, 2006, from http://www.cdc.gov/Epilepsy/index.htm.

Chappell B, Smithson WH. (1998) Patient views on primary care ser-vices for epilepsy and areas where additional professional knowledgewould be welcome. Seizure 7:447–457.

Choi-Kwon S, Yoon SM, Choi MR, Kang DW, Lee SK. (2001) The dif-ference in perceptions of educational need between epilepsy patientsand medical personnel. Epilepsia 42:785–789.

Cowan AE, Ching PL, Clark SJ, Kemper AR. (2005) Willingness of pri-vate physicians to be involved in smallpox preparedness and responseactivities. Biosecurity and Bioterrorism 3:16–22.

Coyle HP, Brown S. (1997) Epilepsy, the law and the media. Medicineand Law 16:323–337.

Crawford P, Hudson S. (2003) Understanding the information needsof women with epilepsy at different lifestages: results of the ‘IdealWorld’ survey. Seizure 12:502–507.

DiIorio C, Manteuffel B. (1995) Preferences concerning epilepsy edu-cation: opinions of nurses, physicians, and persons with epilepsy. JNeurosci Nursing 27:29–34.

DiIorio C, Osborne Shafer P, Letz R, Henry T, Schomer DL, Yeager K.(2003) The association of stigma with self-management and percep-tions of health care among adults with epilepsy. Epilepsy Behavior4:259–267.

Frith JF, Harris MF, Beran RG. (1994) Management and attitudesof epilepsy by a group of Sydney general practitioners. Epilepsia35:1244–1247.

Haviland L, Thornton AH, Carothers S, Hund L, Allen JA, Kastens B,Wojciak A, Hamasaka L, Healton C. (2004) Giving infants a greatstart: launching a national smoking cessation program for pregnantwomen. Nicotine & Tobacco Research 6(Suppl 2):S181–S188.

Henry K, Lawyer BL, Member Demographics Subcommittee of AAN.(2005) Neurologists 2004. American Academy of Neurology, St.Paul.

Khan A, Huerter V, Sheikh SM, Thiele EA. (2004) Treatments andperceptions of epilepsy in Kashmir and the United States: a cross-cultural analysis. Epilepsy Behavior 5:580–586.

Kim MK, Kim IK, Kim BC, Cho KH, Kim SJ, Moon JD. (2003) Posi-tive trends of public attitudes toward epilepsy after public educationcampaign among rural Korean residents. Journal of Korean MedicalScience 18:248–254.

Krause G, Ropers G, Stark K. (2005) Notifiable disease surveillance andpracticing physicians. Emerging Infectious Diseases 11:442–445.

Kyngas H. (2003) Patient education: perspective of adolescents with achronic disease. Journal of Clinical Nursing 12:744–751.

Le QC, Dinh DT, Jallon P. (2006) Survey of public awareness, attitudes,and understanding toward epilepsy in Nhan Chinh, Hanoi, Vietnam,in 2003. Epilepsy Behavior 8:176–180.

Long L, Reeves AL, Moore JL, Roach J, Pickering CT. (2000) An as-sessment of epilepsy patients’ knowledge of their disorder. Epilepsia41:727–731.

Marchetti RL, de Castro AP, Daltio CS, Cremonese E, Ramos JM, NetoJG. (2004) Attitudes of Brazilian psychiatrists toward people withepilepsy. Epilepsy Behavior 5:999–1004.

Mills N, Bachmann M, Harvey I, McGowan M, Hine I. (1997) Patients’experience of epilepsy and health care. Family Practice 14:117–123.

Palmgreen P, Donohew L, Lorch EP, Hoyle RH, Stephenson MT. (2001)Television campaigns and adolescent marijuana use: tests of sensa-tion seeking targeting. American Journal of Public Health 91:292–296.

Paschal AM, Ablah E, Wetta-Hall R, Molgaard CA, Liow K. (2005)Stigma and safe havens: a medical sociological perspective onAfrican-American female epilepsy patients. Epilepsy Behavior7:106–115.

Piniewski-Bond J, Celestino PB, Mahoney MC, Farrell CD, Bauer JE,Hastrup JL, Cummings KM. (2003) A cancer genetics educationcampaign: delivering parallel messages to clinicians and the public.Journal of Cancer Education 18:96–99.

Poole K, Moran N, Bell G, Solomon J, Kendall S, McCarthy M, Mc-Cormick D, Nashef L, Johnson A, Sander J, Shorvon S. (2000) Pa-tients’ perspectives on services for epilepsy: a survey of patient sat-isfaction, preferences and information provision in 2394 people withepilepsy. Seizure 9:551–558.

Pugh MJ, Copeland LA, Zeber JE, Cramer JA, Amuan ME, CavazosJE, Kazis LE. (2005) The impact of epilepsy on health status amongyounger and older adults. Epilepsia 46:1820–1827.

Ryan BL, Speechley KN, Levin SD, Stewart M. (2003) Parents’ andphysicians’ perceptions of childhood epilepsy. Seizure 12:359–368.

Sander JW. (2005) Ultimate success in epilepsy–the patient’s perspec-tive. European Journal of Neurology 12(Suppl 4):3–11.

Strine TW, Kobau R, Chapman DP, Thurman DJ, Price P, Balluz LS.(2005) Psychological distress, comorbidities, and health behaviorsamong U.S. adults with seizures: results from the 2002 NationalHealth Interview Survey. Epilepsia 46:1133–1139.

Suurmeijer TP, Reuvekamp MF, Aldenkamp BP. (2001) Social func-tioning, psychological functioning, and quality of life in epilepsy.Epilepsia 42:1160–1168.

Swarztrauber K. (2004) Barriers to the management of patients withsurgically remediable intractable epilepsy. CNS Spectrums 9:146–152.

Thapar AK, Roland MO. (2005) General practitioner attitudes to the careof people with epilepsy: an examination of clustering within practicesand prediction of patient-rated quality of care. BMC Family Practice6:9.

Thapar AK, Stott NC, Richens A, Kerr M. (1998) Attitudes of GPsto the care of people with epilepsy. Family Practice 15:437–442.

Vogtle LK, Martin R, Russell Foushee H, Edward Faught R. (2007) Acomparison of physicians’ attitudes and beliefs regarding driving forpersons with epilepsy. Epilepsy Behavior 10:55–62.

SUPPLEMENTARY MATERIAL

The following supplementary material is available forthis article:

The Appendix is: Survey Instrument

This material is available as part of the online article from:http://www.blackwell-synergy.com/doi/abs/10.1111/j.1528-1167.2007.01137.x

(This link will take you to the article abstract).

Please note: Blackwell Publishing is not responsible forthe content or functionality of any supplementary ma-terials supplied by the authors. Any queries (other thanmissing material) should be directed to the correspondingauthor for the article.

Epilepsia, Vol. 48, No. 10, 2007