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DOI: 10.1542/peds.2010-1371; originally published online January 23, 2012;Pediatrics

Shirley A. Russ, Kandyce Larson and Neal HalfonA National Profile of Childhood Epilepsy and Seizure Disorder

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located on the World Wide Web at:The online version of this article, along with updated information and services, is

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A National Profile of Childhood Epilepsy and Seizure

Disorder

WHATS KNOWN ON THIS SUBJECT: Epilepsy/seizure disorder is

known to be associated with a range of mental health and

neurodevelopmental comorbidities, based on clinical studies, and

on population studies largely conducted outside the United States.

WHAT THIS STUDY ADDS: In a nationally representative sample of

US children, estimated prevalence of reported lifetime epilepsy/

seizure disorder was 1%, and of current epilepsy/seizure disorder

was 6.3/1000. Developmental, mental health, and physical

comorbidities are common, warranting enhanced surveillance,

and an integrated service approach.

abstractOBJECTIVE: To determine sociodemographics, patterns of comorbidity,

and function of US children with reported epilepsy/seizure disorder.

METHODS: Bivariate and multivariable cross-sectional analysis of data

from the National Survey of Childrens Health (2007) on 91 605 children

ages birth to 17 years, including 977 children reported by their

parents to have been diagnosed with epilepsy/seizure disorder.

RESULTS: Estimated lifetime prevalence of epilepsy/seizure disorder

was 10.2/1000 (95% confidence interval [CI]: 8.711.8) or 1%, and ofcurrent reported epilepsy/seizure disorder was 6.3/1000 (95% CI: 4.9

7.8). Epilepsy/seizure disorder prevalence was higher in lower-income

families and in older, male children. Children with current reported

epilepsy/seizure disorder were significantly more likely than those

never diagnosed to experience depression (8% vs 2%), anxiety (17%

vs 3%), attention-deficit/hyperactivity disorder (23% vs 6%), conduct

problems (16% vs 3%), developmental delay (51% vs 3%), autism/

autism spectrum disorder (16% vs 1%), and headaches (14% vs

5%) (all P , .05). They had greater risk of limitation in ability to

do things (relative risk: 9.22; 95% CI: 7.5611.24), repeating a school

grade (relative risk: 2.59; CI: 1.52

4.40), poorer social competence andgreater parent aggravation, and were at increased risk of having

unmet medical and mental health needs. Children with prior but

not current seizures largely had intermediate risk.

CONCLUSIONS: In a nationally representative sample, children with seiz-

ures were at increased risk for mental health, developmental, and phys-

ical comorbidities, increasing needs for care coordination and specialized

services. Children with reported prior but not current seizures need fur-

ther study to establish reasons for their higher than expected levels of

reported functional limitations. Pediatrics 2012;129:256264

AUTHORS:Shirley A. Russ, MD, MPH,

a,b

Kandyce Larson, PhD,b,c and Neal Halfon, MD, MPHb,c,d

aDepartment of Academic Primary Care Pediatrics, Cedars-Sinai

Medical Center, Los Angeles, California; bUniversity of California

Los Angeles Center for Healthier Children, Families, and

Communities, Los Angeles, California; and cDepartment of

Pediatrics, David Geffen School of Medicine, and dDepartment of

Health Services, School of Public Health, and Department of

Public Policy, School of Public Affairs, University of California Los

Angeles, Los Angeles, California

KEY WORDS

epilepsy, seizure disorder, children

ABBREVIATIONS

ADHDattention-deficit/hyperactivity disorder

ASDautism spectrum disorder

CIconfidence interval

MADDSPMetropolitan Atlanta Developmental Disabilities Sur-

veillance Program

NSCHNational Survey of Childrens Health

RRrelative risk

www.pediatrics.org/cgi/doi/10.1542/peds.2010-1371

doi:10.1542/peds.2010-1371

Accepted for publication Oct 13, 2011

Address correspondence to Shirley A. Russ, MD, MPH, University

of California Los Angeles Center for Healthier Children, Families,

and Communities, 10990 Wilshire Blvd, Suite 900, Los Angeles, CA

90024. E-mail: [email protected]

PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).

Copyright 2012 by the American Academy of Pediatrics

FINANCIAL DISCLOSURE: The authors have indicated they have

no financial relationships relevant to this article to disclose.

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Epilepsy/seizure disorder is the most

common childhood neurologic con-

dition,1 and a major public health

concern.2 Children diagnosed with

epilepsy face considerable chal-

lenges. The seizures themselves, es-

pecially when poorly controlled, maybe disabling and interfere with the

childs ability to learn, whereas sec-

ondary influences, such as stigma

and lack of knowledge about the

condition can negatively affect social

and psychological function.35 In addi-

tion, children with epilepsy frequently

exhibit comorbidities that affect de-

velopmental progress and emotional

health, including attention-deficit/

hyperactivity disorder (ADHD),68 learn-ing disabilities,911 depression, and

anxiety.1,1216 Knowledge of the epide-

miology of childhood epilepsy and of

current functioning of children with

this condition will help inform the

development of systems of care that

move beyond a narrow focus on seizure

control to address implications of the

condition for the childs social, emo-

tional, and developmental well-being.3

Most studies of childhood epilepsy in

the United States have been conducted

on subjects recruited from general and

specialist medical settings, so may be

biased toward inclusion of children

with the most complex clinical pic-

tures.17 Population-based studies, with

subjects recruited from nonmedical

community-based settings have gen-

erally been based on local samples,2

with limited ability to examine a wide

range of potential comorbidities andfunctional attributes, or have been

conducted outside the United States.18

Identifying and characterizing the full

range of comorbidities in people with

epilepsy has been identified as a Na-

tional Institute of Neurologic Disorders

and Stroke Epilepsy Research Bench-

mark.19 To address this gap in knowl-

edge, we used data from the 2007

National Survey of Childrens Health

(NSCH) to estimate the prevalence of

reported epilepsy/seizure disorder for

US children, and to examine comor-

bid mental health/developmental dis-

orders, physical health conditions, and

child and family functioning. To our

knowledge, this is the first nationalstudy to estimate prevalence of repor-

ted epilepsy/seizure disorder in US

children and to examine patterns of

reported comorbidity.

METHODS

Sample

The 2007 NSCH was conducted as

a module of the State and Local Area

Integrated Telephone Survey by the

National Center for Health Statistics.

The study used a stratified random-

digit-dial sampling design to achieve

a nationally representative sample of

91 642 parents of children 0 to 17 years

of age. One child was randomly se-

lected from each household and inter-

views were conducted with the parent

or guardian who knew most about the

childs health and health care. Inter-

views lasting 30 minutes were con-

ducted in English and Spanish. Theoverall weighted response rate was

51.2% (American Association of Public

Opinion Rate 4).

The sample for this study included 91

605 children ages birth to 17 with

nonmissing data on the question

about lifetime epilepsy/seizure dis-

order. There is some variability in the

final study sample for each different

comorbid condition/functioning in-

dicator owing to missing data, andbecause certain measures were not

relevant and/or not asked for infants

or very young children. Questions

about learning disability were asked

only of children ages 3 to 17 years,

questions about severe headaches

were asked only of children ages 6 to

17 years, and questions about oral

health problems were asked only of

children ages 1 to 17 years. Height/

weight data were restricted to chil-

dren ages 10 and older because of

concerns about the validity of par-

ent report for younger ages.20 School

functioning and social competence

were measured only for children ages

6 to 17. Questions about mental healthtreatment were asked only of children

older than 24 months, and special ed-

ucation services only of children aged 6

to 17 years.

To produce population-based estimates,

data records for each interview were

assigned a sampling weight. NSCH

sampling weights adjust for strati-

fication by geographic area and vari-

ous forms of nonresponse, including

poststratification to match populationcontrol totals on key demographic

variables obtained from Census Bu-

reau data. Further details on the de-

signandoperationofNSCHarereported

elsewhere.20 This study was granted

exempt status by the University of

California Los Angeles Institutional Re-

view Board.

Measures

Lifetime Epilepsy or Seizure Disorder

Parents were asked if a doctor or

health care provider ever told them

that their child had epilepsy or seizure

disorder, and if so, if their child cur-

rently had epilepsy or seizure disor-

der. Children were categorized as

never diagnosed with epilepsy/

seizure disorder, currently diagnosed,

or previously but not currently

diagnosed.

Mental Health and Developmental

Indicators

Children were identified as having

comorbid mental health/developmental

disorders if the parent reported that the

child currently had depression, anxiety,

attention-deficit disorder/ADHD, con-

duct problems, learning disability, de-

velopmental delay, or autism/autism

spectrum disorder (ASD).

ARTICLE

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Physical Health Indicators

Measures of physical health included

parent report of a child currently hav-

ing a hearing or vision problem and

currently having asthma. Additional

measures included a health care pro-

vider telling the parent the child hadmigraine headaches in the past year;

hay fever/respiratory allergy, food/

digestive allergy, or eczema/skin al-

lergy; and 3 or more ear infections.

Obesity was defined asa BMI inthe95th

percentile and above according to

Centers for Disease Control and Pre-

vention growth charts.20 Oral health

problems were assessed by parent

report of whether the child had

decayed teeth or cavities, brokenteeth, or bleeding gums in the past 6

months.

Functional Health Indicators

Parents reported an activity restriction

(yes/no) if the child was limited or

prevented in any way in his/her ability

to do the things most children of the

same age can do. School functioning

was assessed by parent report of

whether the child had ever repeated

a grade, and contact in the past year by

the school about problems. Social

competence was measured by parent

ratings of how often the child shows

respect for teachers and neighbors;

gets along well with other children;

tries to understand others feelings;

and tries to resolve conflicts with

classmates, family, and friends. Items

were summed to create a composite

following criteria established by pre-

vious research21; scores ,12 on the16-point scale identified children with

low social competence. The Aggrava-

tion in Parenting scale22 measures

stress in parenting through 3 items

where parents rate how often the child

was much harder to care for than

other children; does things that really

bothers them; and how often they felt

angry with him or her. Items were

summed to create a scale ranging from

0 to 12, and scores above 6 (corre-

sponding with an answer of some-

times for each item) identified parents

with high aggravation.

Service Use and Access Indicators

Parents reported whether their child

received preventive medical care at

least 1 time in the past 12 months, and

mental health treatment or counseling.

Children ages 6 to 17 years were

coded as receiving special education if

parents reported an Individualized Ed-

ucational Program (IEP). Children were

coded as having an unmet healthneedif

their parent reported that during the

past 12 months, thechild neededhealth

care but care was delayed or not re-ceived. The medical home variable was

constructed by researchers at the Child

and Adolescent Health Measurement

Initiative.23 The following criteria must

be met for presence of a medical home:

(1) having a personal doctor or nurse,

(2) having a usual place for sick/well

care, (3) presence of family-centered

care, (4) no trouble obtaining needed

referrals, and (5) receipt of needed

care coordination.

Study Covariates

Study covariates included household

incomeinrelationtothefederalpoverty

level, family structure, race/ethnicity,

highest parent education, child age in

years, andchild gender. Missing dataon

household income were imputed fol-

lowing routines from National Center

for Health Statistics.20

Analysis

All statistical analyses were per-

formedusingStata(version11.0;Stata

Corp, College Station, TX). Survey es-

timation procedures were applied and

the Taylor-series linearization method

adjusted the standard errors for the

complex survey design. We present

prevalence estimates for comorbid

conditions, functioning, and service

use by epilepsy/seizure disorder sta-

tus (never diagnosed, current epilepsy/

seizure disorder, previously diagnosed).

Bivariate associations were examined

using x2

tests with post hoc pairwise

comparisons between selected catego-

ries. Regression models added controlsfor sociodemographics. Relative risks

were estimated using generalizedlinear

models with a Poisson distribution and

log link.24

RESULTS

Prevalence and

Sociodemographics of Epilepsy/

Seizure Disorder

The estimated lifetime prevalence ofepilepsy/seizure disorder was 10.2 per

1000 (95% confidence interval [CI]: 8.7

11.8), or 1%, and current epilepsy/

seizure disorder was 6.3 per 1000

(95% CI: 4.97.8), or 0.6%. After ad-

justment for sociodemographics, life-

time epilepsy/seizure disorder was

more common in children from fami-

lies with income ,100% federal pov-

erty level (relative risk [RR]: 1.95; CI:

1.163.27) (Table 1). There was no re-

lationship between childhood epilepsy

and family structure, race/ethnicity, or

parent educational level. Prevalence of

lifetime epilepsy/seizure disorder (and

also current epilepsy, data not shown)

increased with age. Epilepsy/seizure

disorder was more common in boys

(RR: 1.38; CI: 1.031.84).

Epilepsy/Seizure Disorder

Comorbidity

Compared with children never di-agnosed, children with current

epilepsy/seizure disorder were more

likely to experience mental health and

developmental comorbidities (Table 2).

Depression (8% vs 2%), anxiety (17% vs

3%), ADHD (23% vs 6%), conduct prob-

lems (16% vs 3%), learning disability

(56% vs 7%), developmental delay (51%

vs 3%), and autism/ASD (16% vs 1%)

were all significantly more likely in


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children with current epilepsy (P ,

.05). Each of these conditions was also

reported more frequently in children

with previously but not currently di-

agnosed epilepsy/seizure disorder (eg,

depression [7% vs 2%], developmental

delay [17% vs 3%], autism/ASD [7% vs

1%]).

Compared with children never di-

agnosed, childrenwithcurrent epilepsy/

seizure disorder were more likely to

experience a range of physical healthcomorbidities including hearing or vi-

sion problems (22% vs 2%), asthma

(18% vs 9%), headaches (14% vs 5%),

allergies (43% vs 26%), ear infections

(11% vs 6%), and poor oral health

(Table 3). Children with a former

epilepsy/seizure disorder diagnosis also

had elevated risks. Epilepsy/seizure dis-

order status was not associated with

obesity.

Epilepsy/Seizure Disorder andFunction

Compared with children never di-

agnosed, childrenwithcurrent epilepsy/

seizure disorder were more likely to

have limited activity (RR: 9.22; CI: 7.56

11.24), grade repetition (RR: 2.59; CI:

1.524.42), school problems (RR: 1.63;

CI: 1.262.10), low social competence

(RR: 2.16; CI: 1.612.90), and high levels

of parent aggravation (RR: 2.46; CI:

1.543.93) after adjustment for socio-demographics (Table 4). Children pre-

viously but not currently diagnosed

with epilepsy/seizure disorder also

had greater risks of poorer function

across all domains, in each case with

an intermediate level of risk (eg, ac-

tivity limitation [RR: 2.92; CI: 2.144.00],

grade repetition [RR: 1.55; CI: 1.05

2.27], high parent aggravation [RR:

2.19; CI: 1.443.32]).

Epilepsy/Seizure Disorder andService Use and Access

Comparedwithchildrennever diagnosed,

children with current epilepsy/seizure

disorder were more likely to access

mentalhealthtreatment(RR:3.07;CI:2.25

4.20) and special education services (RR:

6.39; CI: 5.447.50) (Table 5). They were

reported to be as likely to attend pre-

ventive health visits as children never

diagnosed, less likely to report receiving

care in a medical home (RR 0.72; CI: 0.540.96), and more likely to report unmet

needs for care coordination, medical

care, and mental health services. Chil-

dren with a former epilepsy/seizure dis-

order diagnosis also had elevated unmet

care coordination needs.

DISCUSSION

The estimated lifetime prevalence

of epilepsy/seizure disorder among

TABLE 1 Sociodemographic Correlates of Lifetime Epilepsy /Seizure Disorder

Child Ever Diagnosed with Epilepsy/Seizure Disorder

No. in Sample

(Unweighted)

No. Ever Diagnosed

(Unweighted)

Weighted Prevalence per 1000 95% CI per 1000 Adjusted

RR

95% CI

Total 91 605 977 10.2 8.711.8

Former diagnosis 451 3.9 3.34.6

Current diagnosis 526 6.3 4.97.8

Household income

,100% FPL 10 956 170 12.8 9.617.1 1.95 1.163.27

100% 199% FPL 15 575 226 12.5 9.815.9 1.79 1.202.65

200% 299% FPL 16 531 183 12.4 7.620.2 1.51 0.802.85

300% 399% FPL 14 215 111 5.9 4.38.1 0.78 0.511.17

400% FPL or greater 34 328 287 7.7 6.010.0 base

Family structure

Two biological/ adoptive parents 70 595 669 9.1 7.411.2 base

Single mother 14 722 217 13.6 10.717.2 1.22 0.861.73

Other 5741 86 13.6 9.818.7 1.20 0.801.80

Race/Ethnicity

White 61 352 633 10.9 8.813.5 base

African American 8869 108 10.6 7.814.3 0.72 0.511.03

Hispanic 11 520 121 8.9 6.212.9 0.68 0.431.06

Multiracial/Other 8320 95 8.2 4.9

13.4 0.75 0.44

1.27Highest parent education

HS diploma 20 811 309 11.7 9.614.1 1.03 0.731.45

More than HS 69 703 658 9.5 7.711.8 base

Child age, y

05 27 555 204 6.3 4.98.3 base

611 27 781 303 10.3 8.212.8 1.62 1.132.31

1217 36 269 470 14.0 10.818.2 2.26 1.543.33

Child gender

Male 47 513 508 11.8 9.414.9 1.38 1.031.84

Female 43 983 469 8.6 7.210.3 base

FPL, federal poverty level.

ARTICLE


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children in the United States in 2007

was10.2per1000(1%).Prevalenceof

current epilepsy/seizure disorder

was 6.3 per 1000, corresponding to

jus t over 450 000 chi ldren a ges bir th

to 17 yea rs nationwide. Children with

current seizures are at increased risk

for mental health, developmental, and

physical comorbidities, as well as

functional disabilities. They are less

likely to receive care in a medical

home, and are at increased risk for

having unmet needs for medical and

mental health services. Children re-

ported to have previous but not cur-

rent epilepsy/seizure disorder also

had more reported comorbidities and

functional limitations, but at lower

levels than children with active seizure

disorders.

Direct comparison with other preva-

lence studies is hampered by different

methods of case ascertainment, study

samples (local versus national), case

definitions, and cohort ages. These

estimates are slightly higher than the

6.0to 7.7per 1000 lifetime prevalence of

TABLE 2 Mental Health and Developmental Indicators

Depression

(n= 81 860)

Anxiety

(n= 81 857)

ADHD

(n= 81 664)

Conduct

(n = 81 884)

Learning

Disability

(n= 77 731)

Developmental

Delay

(n = 81 794)

Autism

(n= 81 852)

Never diagnosed with

epilepsy/seizure disorder

No. cases 1598 2519 5294 2247 5417 2117 830

Weighted prevalence(95% CI)

1.9 (1.72.2) 2.7 (2.53.0) 6.2 (5.96.7) 3.2 (2.93.5) 7.3 (6.97.8) 2.8 (2.63.1) 0.9 (0.81.1)

Current epilepsy/seizure

disorder

No. cases 49 95 127 90 286 249 65

Weighted prevalence

(95% CI)

8.4 (4.315.7) 17.4 (10.228.1) 23.1 (15.333.3) 15.6 (9.624.4) 56 (44.666.9) 50.5 (39.161.9) 15.5 (8.526.4)

Relative risk adjusteda

(95% CI)

3.43 (1.966.00) 5.26 (3.268.50) 2.92 (2.014.25) 3.83 (2.376.20) 6.73 (5.478.29) 16.37 (12.7720.99) 15.55 (8.6727.90)

Former epilepsy/seizure

disorder

No. cases 35 49 70 41 119 77 25

Weighted prevalence

(95% CI)

7.3 (4.311.9) 8.9 (5.813.4) 15.6 (9.923.6) 8 (4.912.9) 26.2 (20.033.5) 17.1 (12.123.6) 6.8 (3.512.8)


(95% CI)

2.93 (1.744.93) 2.6 (1.694.01) 1.57 (1.102.24) 1.99 (1.233.20) 3.05 (2.324.01) 5.42 (3.847.65) 7.02 (3.7813.06)

a Models include controls for household income, family structure, race/ethnicity, parent education, child age, and gender.

TABLE 3 Physical Health Indicators

Hearing/Vision

(n = 91 410)

Asthma

(n = 91 378)

Headaches

(n = 63 996)

Allergies

(n= 91 341)

Ear Infections

(n = 91 547)

Obesity

(n= 44 083)

Oral Health

Problems

(n= 86 465)



No. cases 2025 7765 3457 25 429 5265 5918 17 627

Weighted prevalence

(95% CI)

2.4 (2.12.6) 9 (8.59.4) 5.2 (4.85.6)

26.4 (25.727.1)

6.2 (5.86.6) 16.3 (15.417.3) 22.8 (22.123.6)


disorder

No. cases 102 96 66 197 70 66 151

Weighted prevalence

(95% CI)

22.2 (12.037. 5) 18. 2 (12.126.3) 13.9 (8.022.8) 43.1 (34.052.7) 10.5 (7.115.1) 16.3 (10.225.0) 31.7 (22.642.5)


(95% CI)

7.96 (4.5214. 02) 1 .8 (1.262.57) 2.33 (1.383.94) 1.63 (1.322.02) 1.99 (1.362.89) 0.96 (0.631.46) 1.35 (0.981.85)


disorder

No. Cases 45 58 51 170 54 52 120

Weighted prevalence

(95% CI)

11 (7.216.5) 13.6 (9.219.6) 19. 1 (12.128.9) 38.3 (30.746.5) 14.8 (9.223.0) 24. 8 (16.435.5) 25.4 (18.433.9)


(95% CI)

3.92 (2.506.15) 1 .35 (0.931.98) 2.76 (1.913.97) 1.35 (1.111.65) 2.08 (1.393.11) 1.29 (0.891.87) 0.91 (0.681.21)



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childhood epilepsy among 10-year-olds

from the 1995 Metropolitan Atlanta

DevelopmentalDisabilities Surveillance

Program (MADDSP),2 and prevalences

reported from other developed coun-tries, possibly reflecting a broader case

definition.2532 Consistent with prior

studies, epilepsy was more prevalent in

boys,2 and in lower-incomefamilies,3335

yet there were no differences based

on race/ethnicity or household educa-

tional level. The prevalence of current

epilepsy/seizure disorder was higher in

older age cohorts. Lack of data on age of

onset of seizures precluded separation

of incident cases, expected to decrease

with age,36,37 from prevalent cases in

each age group.

Our study reports the most compre-

hensive analysis to date of comorbid-ities in a nationally representative

sample of US children with epilepsy.

Compared with MADDSP (1995), which

reported 35% prevalence of any of 4

comorbid developmental disabilities

(mental retardation, cerebral palsy,

visual or hearing impairment) among

children with lifetime epilepsy,2 we

observed a 50% prevalence of de-

velopmental delay and 56% prevalence

of learning disabilities among children

with current epilepsy/seizure disorder.

Rates of learning disability among

children with epilepsy have varied in

the literature from 25% to 76%,10,11,38depending on case definitions and

populations studied. Consistent with

prior studies, we also observed a

strong association between epilepsy

and autism/ASD, and a weaker asso-

ciation with ADHD, suggesting a need

for investigation of potential common

genetic and environmental etiologic

factors.3941 Observed associations with

depression and anxiety are consistent

TABLE 4 Functional Health Indicators

Activity Limitation

(n = 91 492)

Repeated Grade

(n = 63 944)

School Problems

(n= 62 062)

Low Social Competence

(n= 63 553)

High Parent Aggravation

(n = 91 011)



No. cases 4932 5386 17 840 11 606 4141

Weighted prevalence (95% CI) 5.8 (5.46.2) 10.4 (9.811.0) 30.3 (29.431.3) 20.0 (19.220.8) 5.9 (5.46.3)

Current epilepsy/seizure disorderNo. cases 309 93 224 179 99


Relative risk adjusteda (95% CI) 9.22 (7.5611.24) 2.59 (1.524.42) 1.63 (1.262.10) 2.16 (1.612.90) 2.46 (1.543.93)

Former epilepsy/seizure disorder

No. cases 100 61 155 113 49


Relative risk adjusteda (95% CI) 2.92 (2.144.00) 1.55 (1.052.27) 1.26 (1.021.57) 1.67 (1.312.13) 2.19 (1.443.32)


TABLE 5 Service Use and Access

Preventive

Health Visit

(n= 90 784)

Mental Health

Treatment

(n = 81 860)

Special Education

Services

(n= 63 795)

Care in a

Medical Home

(n = 88 034)

Unmet Care

Coordination

Need (n= 91 447)

Unmet Medical

Care Need

(n = 91 487)

Unmet Mental

Health Need

(n= 91 487)



No. cases 78 749 6982 6625 54 197 3792 2686 751

Weighted prevalence

(95% CI)

88.5 (88.089. 0) 7 .9 (7. 58.4) 10.6 (10.011.2) 57.7 (56.958.6) 5.5 (5.16.0) 3.5 (3.23.9) 0.8 (0.71.0)


disorder

No. cases 485 147 285 181 106 55 23

Weighted prevalence

(95% CI)

92 (81.996.7) 27.7 (19.438.0) 74.8 (65.582.3) 39.7 (28.152.5) 18.8 (12.327.5) 18.2 (8.434.9) 8.1 (3.119.6)


(95% CI)

1.06 (0.981.15) 3.07 (2.254.20) 6.39 (5.447.50) 0.72 (0.540.96) 3.34 (2.175.14) 4.91 (2.2910.51) 7.24 (3.1316.71)


disorder

No. cases 403 79 124 207 46 27 10

Weighted prevalence

(95% CI)

88.5 (88.089.0) 15.2 (10.721.2) 30.6 (23.338.9) 40.7 (33.148.7) 14.3 (9.221.6) 5 (2.98.6) 1.5 (0.73.2)


(95% CI)

1.04 (0.981.10) 1.58 (1.132.20) 2.62 (2.043.37) 0.78 (0.650.93) 2.31 (1.503.57) 1.32 (0.752.31) 1.33 (0.583.03)


ARTICLE


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with current literature.1,1214,16,42 Quali-

tative studies show parents of chil-

dren with epilepsy to be largely aware

of their childrens emotional and

behavioral difficulties, but are frus-

trated with inadequate services5 and

stigma associated with accessingmental health care, particularly among

minority families.43 Reported unmet

needs, and lack of a medical home

approach, suggest that the existing

system of care is not fully responsive

to these issues.

Physical healthassociationsof epilepsy/

seizure disorder have not been well

studied. Reported associations with

asthma, allergies, and ear infections

could reflect common etiologic factors(eg, immune-mediated response, envi-

ronmental triggers, genetic predis-

position), but must be interpreted with

caution, as parents may have preferen-

tial recall for these conditions, especially

if related to seizure onset or exacer-

bations, or frequent contact with phy-

sicians more likely to assign these

diagnoses. Our study confirmed repor-

ted associations with headaches.4446

Researchers have suggested that mi-graine and epileptic attacks could rep-

resent a clinical continuum resulting

from altered cortical hyperexcitability.47

Children with a prior history of seizures

who have continuing headaches could

be an important population to study in

relation to this hypothesis.

Most prior studies of school perfor-

mance in childhood epilepsy have re-

lied on subjects recruited from medical

settings, with almost all showing in-creased likelihood of academic diffi-

culties.9,38,48,49 High rates of school

problems and grade repetition in our

community-based sample support

calls for further study of possible neu-

ropsychological deficits, including

declines in processing speed50 and

vulnerabilities in working memory in

children with seizures.51 One study

suggests there may be a window

early after onset of seizures to amelio-

rate impact on school performance.52

We also need more information on

specific contributors to problems

with social competence, and ways to

compensate for or adapt to these

deficits.

Almost 40% of children in our study

previously diagnosed with epilepsy/

seizure disorder were not reported

by parents to currently have the con-

dition. Althoughthese datacould reflect

a true remission of seizure activity, they

could result from an initial mis-

diagnosis of epilepsy/seizure disor-

der, inclusion of some children with

single febrile seizures, or variation in

interpretations of the terms currentversus ever having seizures. Other

studies have reported children with

a history of prior epilepsy to have

worse behavior problems, lower so-

cial competency, slower processing

speeds, and worse reading and spell-

ing abilities.53,54 It is not possible within

the limitations of the NSCH dataset to

answer the important question of

whether it is only those children who

have additional neurologic conditions(eg, cerebral palsy), who have in-

creased risks of comorbidities and

functional limitations, even if seizures

are reported to resolve. Our finding of

higher frequency of comorbidities

compared with children never repor-

ted to have seizures suggests that

children with a previous history of ep-

ilepsy remain a clinically important,

potentially vulnerable group that war-

rants further longitudinal study.Adults with epilepsy have high re-

ported rates of mental health and de-

velopmental comorbidities, including

learning disability,11 anxiety,55,56 de-

pression, and suicidal ideation57,58; and

physical comorbidities including se-

vere headaches, asthma, heart dis-

ease,59 and arthritis.60 High rates of

unemployment61 and l ow er e du-

cat iona l achievement62 are reported

frequently. Pathways to poorer adult

functioning have been attributed to the

effects of recurrent seizures, medi-

cations, and social stigma, but altered

neurodevelopment of the brain start-

ing very early in the life course may

play a role.63 More research is neededto det erm ine whethe r early int er-

vent ion to address cumulative comor-

bidities could disrupt what appear

to be complex and cont inuing path-

ways to poorer health outcomes in

adulthood.

Study limitations include reliance on

parent report, susceptible to recall bias

and inaccuracies, for assigning chil-

dren to diagnostic categories, and the

cross-sectional nature of the data thatpreclude any inferences about di-

rection of observed associations. Par-

ent report has been widely used in the

literature to give valid estimates of

childhood neurodevelopmental con-

ditions,6466 and our estimated preva-

lences were in the same general range

as those obtained from MADDSP using

different methods of case ascertain-

ment.2 Our study lacked data on dif-

ferent subtypes of epilepsy/seizuredisorder (eg, absence, Lennox Gas-

taut), etiology, frequency or duration of

seizures, age at onset or remission, use

of medications or other treatment

modalities, or whether children had

seen a neurologist, or were diagnosed

with additional neurologic conditions.

We could not exclude children who had

received a misdiagnosis of epilepsy

or seizure disorder; however, the

strengths of this study, including thelarge, nationally representative nature

of the study sample, coupled with rich

data on a wide range of potential

comorbid conditions and measures of

child and family function, balance if

not outweigh these potential short-

comings. The findings likely reflect

patterns of morbidity encountered

by community-based pediatricians in

daily practice.


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CONCLUSIONS

The estimated1% prevalence of lifetime

epilepsy/seizure disorder for the US

child population is slightly higher than

prior estimates. High levels of develop-

mental and mental health comorbidi-

ties reported for children with current

epilepsy/seizure disorder underscore

the need for a proactive approach to the

prevention of comorbidities, and a more

structured approach to early detection

and management.67 Further study of the

pathophysiologic processes contribut-

ing to the development of comorbid

conditions may provide clues to the eti-

ology of individual epilepsy/seizure dis-

orders. Children with reported previous

but not current epilepsy appear to con-

tinue to manifest higher rates of neu-

rodevelopmental comorbidities and as

a clinical populations are in need of

more detailed characterization.

ACKNOWLEDGMENT

Dr Halfon was supported in part by

funding from the Maternal and Child

Health Bureau of the Health Resour-

ces and Services Administration for

the University of California Los Angeles

National Center for Education in Ma-

ternal and Child Health Alliance for

Information on Maternal and Child

Health Child and Adolescent Policy

Center.

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Shirley A. Russ, Kandyce Larson and Neal HalfonA National Profile of Childhood Epilepsy and Seizure Disorder

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