Unmet mental health needs in pediatric epilepsy: insights from providers.
ABSTRACT Eighteen pediatric neurologists and 18 pediatricians completed a 5-point Likert scale questionnaire on their knowledge of, attitudes toward, and management of the behavioral, cognitive, and psychosocial aspects of pediatric epilepsy, before and after a lecture on this topic. They also responded to questions about possible barriers to mental health care of children with epilepsy. The brief educational intervention modified the knowledge/attitudes of pediatricians compared with pediatric neurologists on the impact of epilepsy on behavior and cognition in children with epilepsy. However, there were no between-group differences in how providers perceived their competence to assess behavioral and cognitive comorbid conditions in pediatric epilepsy. Responses to open-ended questions suggested insufficient mental health coverage for and expertise on pediatric epilepsy, resistance of mental health clinicians to treat children with epilepsy, and the stigma of mental health as possible barriers to mental health care in children with epilepsy. In addition to the need for provider education about the behavioral and cognitive comorbid conditions of pediatric epilepsy, these findings emphasize the importance of examining alternative routes to increasing mental health care for children with epilepsy.
- [Show abstract] [Hide abstract]
ABSTRACT: Epilepsy is one of the most common disorders encountered in pediatric neurology. A well-trained child neurologist should have an understanding of the neurobiological causes of seizures, classification of seizures and epilepsy, etiologic evaluation, and treatment of both seizures and associated comorbid conditions. Electroencephalography (EEG) is an important diagnostic test in epilepsy, and child neurologists should be knowledgeable in the physiological basis of EEG and how to identify normal and abnormal patterns in neonates and children.Seminars in pediatric neurology 06/2011; 18(2):74-8.
- [Show abstract] [Hide abstract]
ABSTRACT: The present study examined clinical and demographic risk factors associated with parent-rated emotional-behavioral and executive functioning in children and adolescents with epilepsy. The medical records of 152 children and adolescents with epilepsy referred for neuropsychological evaluation were reviewed. Results indicated that the sample displayed significantly elevated symptoms across the emotional-behavioral and executive domains assessed. Executive functioning and behavioral symptoms had the highest rates of clinically elevated scores, with lowest rates of elevated scores in internalizing and externalizing emotional problems. Only 34% of those participants with clinically significant emotional-behavioral or executive functioning difficulties had a history of psychological or counseling services, highlighting the underserved mental health needs of this population. In regard to clinical factors, the majority of seizure-related variables were not associated with emotional-behavioral or executive functioning. However, the frequency of seizures (i.e., seizure status) was associated with behavioral regulation aspects of executive functioning, and the age at evaluation was associated with externalizing problems and behavioral symptoms. Family psychiatric history (with the exception of ADHD) was associated with all domains of executive and emotional-behavioral functioning. In summary, emotional-behavioral and executive functioning difficulties frequently co-occur with seizures in childhood epilepsy, with both seizure-related and demographic factors contributing to the presentation of such neurobehavioral comorbidities. The present findings provide treatment providers of childhood epilepsy with important information to assist in better identifying children and adolescents who may be at risk for neurobehavioral comorbidities and may benefit from intervention. Copyright © 2014 Elsevier Inc. All rights reserved.Epilepsy & Behavior 12/2014; · 2.06 Impact Factor
Unmet mental health needs in pediatric epilepsy: Insights
Kimberly Smitha, Prabha Siddartha, Bonnie Zimaa, Raman Sankarb, Wendy Mitchelld,
Rani Gowrinathane, Alan Shewmonc, Rochelle Caplana,*
aDepartment of Psychiatry, David Geffen School of Medicine, University of California at Los Angeles, Los Angeles, CA, USA
bDepartment of Pediatrics, David Geffen School of Medicine, University of California at Los Angeles, Los Angeles, CA, USA
cDepartment of Neurology, David Geffen School of Medicine, University of California at Los Angeles, Los Angeles, CA, USA
dDepartment of Neurology, University of Southern California, Los Angeles, CA, USA
eDepartment of Neurology, Kaiser–Permanente, Los Angeles, CA, USA
Received 23 January 2007; revised 12 May 2007; accepted 23 May 2007
Available online 17 September 2007
Eighteen pediatric neurologists and 18 pediatricians completed a 5-point Likert scale questionnaire on their knowledge of, attitudes
toward, and management of the behavioral, cognitive, and psychosocial aspects of pediatric epilepsy, before and after a lecture on this
topic. They also responded to questions about possible barriers to mental health care of children with epilepsy. The brief educational
intervention modified the knowledge/attitudes of pediatricians compared with pediatric neurologists on the impact of epilepsy on behav-
ior and cognition in children with epilepsy. However, there were no between-group differences in how providers perceived their compe-
tence to assess behavioral and cognitive comorbid conditions in pediatric epilepsy. Responses to open-ended questions suggested
insufficient mental health coverage for and expertise on pediatric epilepsy, resistance of mental health clinicians to treat children with
epilepsy, and the stigma of mental health as possible barriers to mental health care in children with epilepsy. In addition to the need
for provider education about the behavioral and cognitive comorbid conditions of pediatric epilepsy, these findings emphasize the impor-
tance of examining alternative routes to increasing mental health care for children with epilepsy.
? 2007 Elsevier Inc. All rights reserved.
Keywords: Childhood epilepsy; Provider knowledge; Psychosocial; Mental health care; Behavior
Althoughepilepsy isacommon neurologicalcondition in
childhood , physicians have limited knowledge about and
ter of 50 general practitioners had not witnessed a seizure by
the time they qualified to practice medicine. Two-thirds felt
they gained most of their knowledge about epilepsy from
informal readings after their qualification .
In addition to knowledge about the neurological aspects
of epilepsy, physicians should also be aware of the high rate
of psychopathology [7–16] and unmet mental health needs
in this population [8,9,17–20]. However, many primary
care physicians report they lack expertise or have been
given inadequate training to assess children’s emotions
and behavior [6,21]. Their unfamiliarity with newer antiep-
ileptic drugs (AEDs)  and the effects of AEDs on cogni-
tion and behavior may represent an additional barrier to
these behavioral assessments.
Interestingly, and as found in pediatric chronic illness
[22–24], there is also little concordance between the percep-
tions of physicians and parents on the global, medical, and
mundane impact of epilepsy on children’s lives [25,26].
Thus, parents worry about how epilepsy affects children’s
1525-5050/$ - see front matter ? 2007 Elsevier Inc. All rights reserved.
*Corresponding author. Address: Semel Institute for Neuroscience and
Human Behavior, Room 48-263, 760 Westwood Plaza, Los Angeles, CA
90095-1759, USA. Fax: +1 310 206 4446.
E-mail address: email@example.com (R. Caplan).
Available online at www.sciencedirect.com
Epilepsy & Behavior 11 (2007) 401–408
behavior and learning, whereas pediatric neurologists
believe parents are concerned mainly about seizure control
and stigma [25,26]. These differences in perception between
physicians and parents, together with physicians’ lack of
knowledge of the impact of epilepsy on behavior , could
underlie infrequent mental health care referral of these
Furthermore, as found in the general population of chil-
dren with behavioral and emotional problems [28–31],
most parents of children with epilepsy lack knowledge on
the mental health needs of their children or might be reti-
cent to access such care [7,32]. Still, they need to be quite
assertive to obtain this care for their children, as demon-
strated in studies on children with chronic illness [33,34].
In fact, even when parents make such requests, physicians
agree to make these mental health referrals or record par-
ents’ requests for such referrals only if the child has severe
behavior problems, the parent has psychological problems,
the child reports a problem directly to the physician , or
both parents and physicians agree that the child has behav-
ior problems .
Yet, children in the general population are also often
reluctant to seek mental health care if it is not physician
or parent initiated . This might reflect the stigma asso-
ciated with mental health care  and the social stigma
related to epilepsy [7,39–41]. However, youth may also
not recognize the nature of their internalizing or externaliz-
ing problems . In addition, ethnic and cultural barriers
may also add to the reluctance of these children and their
parents to access mental health care [20,43–45].
The findings of the previously reviewed studies empha-
size the importance of examining what physicians know
about behavioral and cognitive comorbid conditions in
pediatric epilepsy, their attitudes toward the need for men-
tal health services in these children, and how they assess
and manage the need for mental health services in their
patients with epilepsy. However, there is little research in
this area. Identifying providers’ knowledge of and attitudes
toward behavioral and cognitive comorbid conditions in
pediatric epilepsy and gaining a better understanding of
possible barriers to mental health care may provide insights
into how to improve mental health care for these children.
Therefore, in this study, we compared knowledge of and
attitudes toward the behavioral and cognitive comorbid
conditions of epilepsy, as well as management practices
regarding mental health assessment and referrals in two
provider groups: pediatricians and pediatric neurologists.
In addition, we explored what providers perceive as barri-
ers to mental health care and if they are aware of cultural
differences regarding the stigma of mental health referrals
in children with epilepsy and their parents. After a brief
educational intervention in the form of a lecture on the
behavioral and cognitive comorbid conditions as well as
psychosocial aspects of pediatric epilepsy, we determined
changes in physicians’ knowledge of, attitudes toward,
and management practices regarding the mental health
needs of these children.
We hypothesized that, both before and after the educa-
tional intervention, pediatric neurologists would know
more about how epilepsy affects children’s behavior and
learning than pediatricians. The pediatricians, therefore,
would learn more than the neurologists from the educa-
tional intervention. We posited that increased knowledge
would change attitudes toward and possibly provider
obstacles to the relevance of mental health problems in
children and adolescents with epilepsy in both provider
groups. Lastly, we predicted no change in provider mental
health care-related management practices immediately
after the talk (e.g., time spent on behavioral assessments,
interactions with mental health practitioners about their
epilepsy patients) in both provider groups.
We recruited 18 pediatric neurologists from the University of Califor-
nia, Los Angeles (UCLA), Division of Pediatric Neurology, Children’s
Hospital Los Angeles, Olive View–UCLA Medical Center County Hospi-
tal, and Kaiser Permanente–Sunset because of their large pediatric epi-
lepsy clinics. Recruitment sources for pediatricians included UCLA
Pediatric Department clinical faculty who work in outpatient clinics
and/or private practices, as well as the Woodland Hill Kaiser Permanente.
Approval from the UCLA institutional review board was obtained prior
to participant recruitment.
Our research team invited providers to participate in this study by tele-
phone. Of the 152 pediatricians contacted, 18 pediatricians participated in
the study and 134 declined participation for the following reasons: lack of
knowledge about epilepsy (n = 2), lack of interest in the topic (n = 7),
scheduling conflicts (n = 13), planned retirement (n = 9), and no other rea-
son given (n = 121). As many pediatricians did not return phone calls,
despite being called several times, we were unable to ascertain why they
did not call back initially.
2.2.1. Provider questionnaire
The questionnaire is a 39-item instrument designed to measure pro-
vider knowledge of, attitudes toward, and management practices regard-
ing the behavioral and cognitive comorbid conditions of children with
epilepsy. The providers rated items on a 5-point Likert-type severity or fre-
Broad topics measuring provider knowledge included (Table 1): (1)
effects of epilepsy on behavior and cognition/learning, (2) association of
behavioral and cognitive comorbid conditions in pediatric epilepsy with
seizure and psychosocial variables, (3) possible cognitive and behavioral
adverse effects of AEDs, and (4) drugs used to treat common child behav-
ior problems. Questions on provider attitude included (Table 2): (1) pro-
viders’ perception of parent’s main concern for their child with epilepsy,
(2) providers’ comfort level assessing mental health needs and prescribing
psychotropic drugs for children with epilepsy, (3) providers’ perceptions of
the benefits of mental health assessment and treatment for these children,
and (4) providers’ awareness of cultural barriers to mental health care for
children with epilepsy.
Questions assessing provider mental health care-related management
practices included (Table 3): (1) time available for intake and follow-up
examination, (2) inclusion of behavioral assessments in these examina-
tions, (3) adequacy of provider training to conduct behavioral assess-
ments, and (4) provider mental health care referral practices, such as
K. Smith et al. / Epilepsy & Behavior 11 (2007) 401–408
Provider responses to questions on knowledge of behavioral and cognitive/learning comorbid conditions before and after lecture
Proportion of children needing behavioral assessment, M (SD)
Cause of comorbid condition, %
Biological and environmental
2.76 (0.92)1.78 (0.89) 2.33 (1.30)1.53 (0.80)
Most frequent types of psychiatric disorders, %
Proportion of children needing assessment of learning skills, M (SD)
Relationship of behavior difficulties to seizure control, M (SD)
Adolescents have frequent suicidal ideation, M (SD)
Stigma and seizure control are child’s only problems, M (SD)
Behavioral and cognitive side effects of AEDs, M (SD)
Association of learning and behavior problems, M (SD)
Stress associated with social, academic, and familial problems, M (SD)
Differential diagnosis of tired, listless, and apathetic child with epilepsy, M (SD)
High doses of AEDs
Include questions on children’s behavior in initial assessment, M (SD) 1.61 (0.78)1.47 (0.80) 2.56 (1.15)2.31 (1.04)
Provider responses to questions on provider attitude regarding child’s main problems and mental health care before and after lecture
Pediatric neurologist Pediatrician
Comfort using stimulants, SSRIs, neuroleptics, M (SD)
Parents’ greatest wish for their child, M (SD)
No behavior problems
No learning problems
Acceptance/reluctance of mental health referral by parents, %
Proportion of children who should have behavioral assessment, M (SD)1.61 (0.98) 1.44 (0.62)1.82 (1.07)1.35 (0.79)
Main obstacle to mental health services for pediatric epilepsy, M (SD)
Provider awareness of cultural barriers for mental health care, %
K. Smith et al. / Epilepsy & Behavior 11 (2007) 401–408
type of mental health care consultants used, consultant availability, con-
tact with these practitioners following the consults, and perceived useful-
ness of mental health practitioner assessments and feedback.
2.2.2. Open-ended questions
Providers also responded to open-ended questions in which they elab-
orated on their personal perspectives regarding the importance of behav-
ioral assessments and treatment of psychiatric disorders in children with
epilepsy. These questions queried providers’ awareness of possible obsta-
cles to mental health care including: (1) stigma of a mental health referral
in parents of different ethnicities, (2) parental resistance to mental health
referrals, (3) difficulties parents face obtaining mental health care, and
(4) provider confidence regarding the benefit of mental health care for
these children. In addition to providing a fixed response option of ‘‘yes/
no,’’ the open-ended items had additional lines provided for the respon-
dents to elaborate on their answers.
This study was conducted in accordance with the policies of the
Human Subjects Protection Committees of UCLA. Once providers were
successfully contacted and agreed to participate in the study, they were
given details about the educational intervention and queried about the
most convenient time for the lecture to be held. Informed consent was
obtained from all participants prior to the educational intervention.
Providers attended a 50-minute lecture on the cognitive and behavioral
comorbid conditions of pediatric epilepsy, as well as related biological and
psychosocial factors, given by a pediatric neuropsychiatrist with clinical
and research experience in pediatric epilepsy (R.C.).
Before the lecture, participants spent 10–15 minutes completing the
provider questionnaire. Immediately after the talk, they again completed
the same questionnaire.
2.4. Data analysis
Items from the provider questionnaire were grouped together into four
broad domains. They included provider knowledge/attitude, training,
assessment of behavior and cognition, and perception of obstacles to men-
tal health care. Principal component analysis was conducted for measures
within each domain to obtain a reduced number of outcome measures that
could be compared pre- and postintervention and across groups (pediatri-
cian vs pediatric neurologist).
To examine the effect of the educational intervention, as well as differ-
ences in provider ratings, mixed effects models were estimated with factor
scores as the dependent variable. The between-subject factor was type of
provider (pediatricians vs pediatric neurologist), and time (before vs after
intervention) was the within-subject factor. The interaction provider
type · time was also included in the model, to determine if only one type
of provider changed as a result of the intervention. A 0.05 level of signif-
icance was adopted.
3.1. Principal component analysis
Tables 1–3 list providers’ ratings (means (SD) and per-
centages) of questionnaire items on knowledge, attitude,
and management practices, respectively, before and after
the lecture. The principal components analysis for the
knowledge/attitude domain revealed six components with
the following loadings: knowledge about the rate of behav-
ioral (0.84) and cognitive (0.85) comorbid conditions in
pediatric epilepsy; seizure control (0.78) and its relationship
with behavior and learning disturbances (0.92); frequent
psychiatric diagnoses (0.65) and behavioral effects of AEDs
(0.73) in pediatric epilepsy; behavioral impact of cognition
(0.58), AEDs (0.57), and suicidality (0.58); parental con-
cerns for their children (0.90); and the role of stress in sei-
The training domain included provider use of selective
serotonin reuptake inhibitors (SSRIs) (0.86), antipsychotic
drugs (0.81), and stimulants (0.62) and feelings of compe-
tence to assess behavior (0.80) and learning (0.66) in chil-
dren with epilepsy. The provider assessment of behavior
and cognition domain had two components. The first com-
ponent incorporated the frequency with which providers
include questions on behavior and learning in initial
(0.86) and follow-up (0.89) examinations of children with
epilepsy and how much time they allotted to these evalua-
Provider responses to questions on provider mental health care-related management practices before and after lecture
Pre PostPre Post
Time for intake visit, M (SD)
Time for follow-up visit, M (SD)
Enough time for behavioral assessment, M (SD)
Includes questions on behavior in initial and follow-up assessments, M (SD)
Adequate training to assess and treat behavior problems, M (SD)
Enough training to assess and treat learning problems, M (SD)
Referral sources for children with behavior problems, %
Ongoing working relationship with a consulting psychologist, M (SD)
Ongoing working relationship with a consulting child psychiatrist, M (SD)
Parents refuse to accept mental health assessment or treatment, M (SD)
Feedback/communication with consultants on children’s condition, M (SD)
Feedback modifies provider’s treatment of child, M (SD)
Children benefit from mental health assessments, M (SD)
K. Smith et al. / Epilepsy & Behavior 11 (2007) 401–408
tions (intake, ?0.76; follow-up, ?0.69). The second com-
ponent included provider mental health referral practices
in terms of whom they referred to (0.76) and if they
obtained (0.81) and used (0.86) feedback from these
The obstacle domain had three components. The first
loaded on provider perception of parental resistance to
mental health referrals (0.92) and cultural stigma to mental
health care (0.82). The second loaded on provider opinion
regarding the benefit of mental health care assessments for
children with epilepsy (0.82) and the likelihood that provid-
ers would refer children for such assessments if parents are
resistant (0.80). The third component loaded on the likeli-
hood that parents would accept a mental health referral for
their children (0.88) and provider satisfaction with the time
available for assessing behavior in these children (0.60).
3.2. Between-group differences and intervention effects
The mixed effects models comparing knowledge/attitude
in the provider groups revealed that pediatricians learned
significantly more about the rate of comorbid behavioral
and cognitive disturbances
F(1,32) = 4.33, P < 0.04), in addition to the behavioral
impact of cognition, AEDs, and suicidality (occupa-
tion · time: F(1,32) = 3.95, P < 0.05), than pediatric neu-
rologists after the lecture. Following the lecture, however,
knowledge on the interaction of stress, AEDs, and seizure
control (time: F(1,32) = 11.45, P < 0.002) increased in both
With respect to behavioral and cognitive assessments,
pediatric neurologists were significantly more aware than
pediatricians of the importance of these assessments, as
well as the need for feedback to and from mental health
consultants (occupation: F(1,32) = 13.28, P < 0.0009).
There were no significant between-group differences or
changes in provider knowledge about the relationship of
seizure control to behavior and learning disturbances.
There were also no significant between-group differences
or changes in provider knowledge of parental concerns
regarding the impact of epilepsy on their children’s lives,
such as seizure control, behavior problems, and learning
The mixed effects model results for the provider training
factor indicated no significant occupation, time, or occupa-
tion · time effects. In the provider management practice
domain, the mixed effects model indicated that pediatric
neurologists inquired about behavior and learning in initial
and follow-up examinations of children with epilepsy and
provided more time to complete their evaluations than
pediatricians (occupation: F(1,32) = 16.18, P < 0.0003).
There were no significant differences in the second compo-
nent (i.e., mental health referral practices) by occupation,
following the lecture, and no interaction effect of these
In the mental health obstacles domain, the mixed effects
models demonstrated the following: pediatric neurologists
(occupation · time:
were significantly more aware than pediatricians of paren-
tal resistance to and the cultural stigma associated with
mental health care in children with epilepsy (occupation:
F(1,28) = 11.35, P < 0.002). The pediatricians, more often
than the pediatric neurologists, thought that parents would
resist mental health referrals and that there is little benefit
from these referrals (occupation: F(1,28) = 4.09, P < 0.05).
Following the lecture, however, pediatric neurologists and
pediatricians thought parents were less likely to resist these
referrals (time: F(1,28) = 6.22, P < 0.02). Pediatricians,
however, thought there was adequate time to conduct
tion · time: F(1,28) = 5.15, P < 0.03).
these children (occupa-
3.3. Open-ended questions
The pediatric neurologists reported great difficulty pro-
viding for the mental health needs of their epilepsy
patients. They cited insufficient mental health care coverage
by insurance companies and government agencies, lack of
mental health care professionals with expertise in pediatric
epilepsy, and resistance by child psychiatrists and other
mental health care clinicians to assessment and treatment
of children with epilepsy as reasons for this difficulty. Addi-
tional obstacles included lack of bilingual mental health
care providers and cultural barriers associated with the
stigma of mental health care in African-American, His-
panic, Asian, and Middle Eastern families. Although the
majority of providers reported that they would make men-
tal health referrals irrespective of parents’ reluctance, pro-
viders acknowledged that parental discretion determined
whether or not they would proceed with the referral for
their child. Finally, with respect to educational enrichment,
both pediatric neurologists and pediatricians made it clear
that they did not have time to read papers or manuals,
watch videotapes, or attend lectures to increase their
knowledge on the psychosocial aspects of epilepsy in
As predicted, the educational intervention was effective
in delivering knowledge about the impact of epilepsy on
behavior and learning, the high rates of comorbid mental
health and learning problems, suicidality, and the possible
role of cognition and AEDs in behavior and learning in
these children. Both provider groups also became signifi-
cantly more aware of the interactions among stress, behav-
ioral and cognitive side effects of AEDs, poor seizure
control, and behavioral comorbid conditions in youth fol-
lowing the lecture. Of note, pediatric neurologists and pedi-
atricians thought parents were less resistant to mental
health referrals after but not before the lecture.
As found in pediatric chronic illness [22,23] and in the
general population of children , the providers were una-
ware of the great need for mental health referrals in chil-
dren with epilepsy. Increase in their knowledge following
K. Smith et al. / Epilepsy & Behavior 11 (2007) 401–408
the brief educational intervention is encouraging for two
reasons. First, primary care physicians report they lack
knowledge and expertise both on epilepsy [2–5] and on
emotions and behavior in children without epilepsy
[6,21]. Second, both specialists and pediatricians are impor-
tant facilitators for the delivery of mental health services in
children [33,35,36]. Therefore, increasing their knowledge
of the high risk of psychopathology and the unmet mental
health needs among these children is essential.
Interestingly, despite their apparent lack of knowledge,
both provider groups perceived themselves as competent
to assess behavioral and cognitive comorbid conditions in
children with epilepsy. This finding goes hand-in-hand with
the high rates of prescribing psychotropic drugs, such as
stimulants and SSRIs, by pediatricians . Nevertheless,
compared with the pediatricians, the pediatric neurologists
were more likely to refer children to mental health care,
more aware of parental resistance to and the cultural
stigma associated with mental health referrals, and more
cognizant of the benefit from mental health referrals for
these children. Therefore, improving provider knowledge
and awareness of the behavioral and learning comorbid
conditions of pediatric epilepsy is an important, albeit first,
step to reduce provider-based obstacles to mental health
care for children with epilepsy, especially in primary care.
To further understand possible obstacles to mental
health care for these children, we explored how providers
perceive parents’ main concerns for children. In contrast
[25,26,48,49] and chronic illness [36,50], we did not confirm
that providers described parents as more concerned by ill-
ness variables (e.g., seizure control) than by illness-related
behavioral and learning problems. Given the study’s small
sample size, this finding needs to be replicated in a large
representative sample of both pediatric neurologists and
On the basis of the open-ended questions, the pediatric
neurologists stated that limited resources (e.g., insurance
coverage, expertise) for mental health services and lack of
mental health professionals with expertise in pediatric epi-
lepsy were important barriers to mental health care in pedi-
atric epilepsy. Inadequate or insufficient medical insurance
[51–53] and available professional expertise  have also
been described as potential structural barriers to mental
health care for children with chronic illness.
Although open-ended questions are not applicable to
quantitative data analysis, the responses of providers to
these questions, together with our quantitative findings,
highlighted several issues that have relevant policy implica-
tions. First, it is important to determine how best to ensure
financial coverage for the assessment and treatment of the
comorbid behavioral, cognitive, and linguistic problems
found in children with new-onset and chronic epilepsy with
average [8,9,54–58] or low [59–61] intelligence quotient
Second, in addition to increasing the number of child
psychiatry and psychology clinicians with expertise in pedi-
atric epilepsy, educating child mental health clinicians
about epilepsy and the associated behavioral and cognitive
comorbid conditions might be a first step in increasing their
willingness to work with these children. Third, our findings
suggest that there is a need to increase provider knowledge
about the behavioral and cognitive comorbid conditions as
well as the psychosocial aspects of epilepsy. However, it is
unclear who should get this training (pediatricians or pedi-
atric neurologists), as well as when and how should it be
delivered. The pediatricians’ resistance to enroll in this
study, the open-ended responses indicating lack of time
and interest in epilepsy, and prior findings demonstrating
limited provider knowledge [62,63] underscore the need
for other methods to educate providers about the impact
of epilepsy on the lives of children and their families. Alter-
natively, educating parents about the need to assess the
behavioral, cognitive, and linguistic comorbid conditions
of pediatric epilepsy may facilitate mental health service
delivery for their children, given the role parents play in
obtaining mental health care referrals from providers for
their children [33,36].
Fourth, in both their quantitative and open-ended
responses, providers acknowledged that the combined
stigma of epilepsy and mental health might deter minority
parents from mental health referrals. Although there is evi-
dence for the stigma of mental illness  and epilepsy
[7,39–41], there have been no studies to date on the com-
bined stigma of epilepsy and mental illness and whether
it prevents children with epilepsy and their parents from
seeking mental health care. In addition, evidence for vari-
able cultural awareness of both epilepsy  and mental ill-
ness [20,43,44] across ethnic groups emphasizes the
importance of identifying the best way to deliver culturally
sensitive information about epilepsy and its mental health
comorbid conditions to children with epilepsy and their
Results from this study should be interpreted cau-
tiously because of the difficulty we encountered recruiting
pediatricians for this study. Although we designed the
study to accommodate providers’ schedules, most of them
did not return phone calls or showed minimal interest in
enhancing their education on this topic. This phenomenon
suggests that limited knowledge of, time for, and interest
in epilepsy may represent a serious barrier to mental
health referrals of these children. In fact, Traynor et al.
 purported that there needs to be more recognition
of the time practitioners put into surveys and that
researchers need to consider the additional demands these
place on their already busy lives.
Other study limitations include the cross-sectional study
design and associated lack of information on whether the
changes in provider knowledge and attitudes after the edu-
cational intervention were transient or consistent. In addi-
tion, the small sample size of providers underscores the
preliminary nature of the study’s findings and the need
for replication in larger representative samples of both
pediatricians and pediatric neurologists.
K. Smith et al. / Epilepsy & Behavior 11 (2007) 401–408
Despite these limitations and the preliminary nature of
our findings, they represent a first step toward determin-
ing obstacles to mental health care, particularly with
respect to the role of providers, in the unmet mental
health needs of children with epilepsy. Although our
findings indicate a need to increase provider knowledge,
they also suggest that this might not be the best way
to secure mental health care for children with epilepsy.
Given the complex interaction among provider (i.e.,
expertise), illness severity/disability, psychosocial, cul-
tural, and funding variables in determining access to
mental health care for children with epilepsy, future
large-scale studies are warranted. Such studies should
examine the likelihood of achieving this goal through
alternative routes, such as providing funding for mental
health care, increasing parents’ awareness of the need
for mental health care, as well as incorporating modules
on epilepsy and its comorbid conditions into the training
programs of pediatricians, pediatric neurologists, and
child mental health clinicians.
This study was supported by Shire Targeted Grant
NS32070 (R.C.). We appreciate the assistance of Marion
Belinda Tucker, Ph.D., Alfred Pennisi, M.D., Joyce Wu,
M.D., Rinat Jonas, M.D., and the Epilepsy Foundation
 Noeker M, Haverkamp-Krois A, Haverkamp F. Development of
mental health dysfunction in childhood epilepsy. Brain Dev
 Frith JF, Harris MF, Beran RG. Management and attitudes of
epilepsy by a group of Sydney general practitioners. Epilepsia
 Gomes MD. Doctors’ perspectives and practices regarding epilepsy.
Arquiv Neuro-Psiquiatria 2000;58(Suppl. 2):221–6.
 Marshall RM, Cupoli JM. Epilepsy and education: the pediatrician’s
expanding role. Adv Pediatr 1986;33:159–80.
 Thapar AK, Scott NCH, Richens AKM. Attitudes of general
practitioners to the care of people with epilepsy. Fam Pract
 Davies D, Scambler G. Attitudes towards epilepsy in general practice.
Int J Soc Psychiatry 1998;34:5–12.
 Austin JK, Shafer PO, Deering JB. Epilepsy familiarity, knowledge,
and perceptions of stigma: report from a survey of adolescents in the
general population. Epilepsy Behav 2002;3:368–75.
 Caplan R, Siddarth P, Gurbani S, Hanson R, Sankar R, Shields WD.
Depression and anxiety disorders in pediatric epilepsy. Epilepsia
 Caplan R. Epilepsy syndromes in childhood. In: Coffey CE,
Brumback RA, editors. Textbook of pediatric neuropsychia-
try. Washington, DC: APA; 1998. p. 977–1110.
 Davies S, Heyman I, Goodman R. A population survey of mental
health problems in children with epilepsy. Dev Med Child Neurol
 Hesdorffer DC, Ludvigsson P, Olafsson E, Gudmundsson G,
Kjartansson O, Hauser WA. ADHD as a risk factor for incident
unprovoked seizures and epilepsy in children. Arch Gen Psychiatry
 Hesdorffer DC, Hauser WA, Olafsson E, Ludvigsson P, Kjartansson
O. Depression and suicide attempt as risk factors for incident
unprovoked seizures. Ann Neurol 2006;59:35–41.
 Hoie B, Sommerfelt K, Waaler PE, Alsaker FD, Skeidsvoll H,
Mykletun A. Psychosocial problems and seizure-related factors in
children with epilepsy. Dev Med Child Neurol 2006;48:213–9.
 Lossius MI, Clench-Aas J, van Roy B, Mowinckel P, Gjerstad L.
Psychiatric symptoms in adolescents with epilepsy in junior high
schoolin Norway:a population
 Ott D, Caplan R, Guthrie D, et al. Measures of psychopathology in
children with complex partial seizures and primary generalized
epilepsy with absence. J Am Acad Child Adolesc Psychiatry
 Rodenburg R, Meijer AM, Dekovic ´ M, Aldenkamp AP. Family
factors and psychopathology in children with epilepsy: a literature
review. Epilepsy Behav 2005;6:488–503.
 Dunn D, Austin J, Huster G. Symptoms of depression in adolescents
with epilepsy. J Am Acad Child Adolesc Psychiatry 1999;38:1132–8.
 Gordon K. Probability, risk, and care of pediatric patients with
epilepsy. Semin Pediatr Neurol 1994;1:127–30.
 Ott D, Siddarth P, Gurbani S, et al. Behavioral disorders in pediatric
epilepsy: unmet psychiatric need. Epilepsia 2003;44:591–7.
 Witt WP, Kasper JD, Riley AW. Mental health services use among
school-aged children with disabilities: the role of sociodemographics,
functional limitations, family burdens, and care coordination. Health
Serv Res 2003;38(6, Pt. 1):1441–66.
 Stiffman AR, Chen Y, Elze D, et al. Adolescents’ and providers’
perspectives on the need for and use of mental health services. J
Adolesc Health 1997;21:335–42.
 Anthony KK, Gil KM, Schanberg LE. Brief report: parental
perceptions of child vulnerability in children with chronic illness. J
Pediatr Psychol 2003;28:185–90.
 Frank RG, Hagglund KJ, Farmer JE. Chronic illness management in
primary care: the cardinal symptoms model. In: Primary care
psychology. Washington, DC: APA; 2004.
 Merkens MJ, Perrin EC, Perrin JM, et al. The awareness of primary
physicians of the psychosocial adjustment of children with a chronic
illness. J Dev Behav Pediatr 1998;10:1–6.
 Coulter DL, Koester BS. Information needs of parents of children
with epilepsy. J Dev Behav Pediatr 1985;6:334–8.
 Ryan BL, Speechley KN, Levin SD, et al. Parents’ and physicians’
perceptions of childhood epilepsy. Seizure 2003;12:359–68.
 Perez-Perez J, Sosa AM, Gonzalez-Casanova S. The knowledge,
clinical control and attitudes of primary care physicians when dealing
with epilepticpatients: preliminary
 Angold A, Costello EJ, Worthman CM. Puberty and depression: the
roles of age, pubertal status and pubertal timing. Psychol Med
 Flisher A, Riccitelli G, Jhetam N, Robertson B. A survey of
professional activities of psychiatrists in South Africa. Psychiatr Serv
 Hoagwood K, Burns BJ, Kiser L, Ringeisen H, Schoenwald SK.
Evidence-based practice in child and adolescent mental health
services. Psychiatr Serv 2001;52:1179–89.
 Horwitz SM, Leaf PJ, Leventhal JM. Identification of psychosocial
problems in pediatric primary care: do family attitudes make a
difference? Arch Pediatr Adolesc Med 1998;152:367–71.
 Lau RR, Williams HS, Williams LC, et al. Psychosocial problems in
chronically ill children: physician concern, parent satisfaction, and
the validity of medical records. J Comm Health 1982;7:250–61.
 Cadman D, Boyle M, Szatmari P, Offord DR. Chronic illness,
disability, and mental and social well-being: findings of the Ontario
Child Health Study. Pediatrics 1987;79:805–13.
 Wildman BG, Kinsman AM, Logue E, et al. Presentation and
management of childhood psychosocial problems. J Fam Pract
K. Smith et al. / Epilepsy & Behavior 11 (2007) 401–408
 Farmer EM, Burns BJ, Phillips SD, Angold A, Costello EJ. Pathways
into and through mental health services for children and adolescents.
Psychiatry Serv 2003;54:60–6.
 Wildman BG, Kizilbashm AH, Smucker WD. Shared vision:
concordance among fathers, mothers, and pediatricians about unmet
needs of children with chronic health conditions. Pediatrics
 Farmer EM, Burns BJ, Phillips SD, et al. Pathways into and through
mental health services for children and adolescents. Psychiatry Serv
 Richardson LA. Seeking and obtaining mental health services: what
do parents expect? Arch Psychiatr Nurs 2001;15:223–31.
 Choi-Kwon S, Park KA, Lee HJ, et al. Familiarity with, knowledge
of, and attitudes toward epilepsy in residents of Seoul, South Korea.
Acta Neurol Scand 2004;110:39–45.
 Jacoby A, Snape D, Baker GA. Epilepsy and social identity: the
stigma ofa chronic neurological
 Paschal AM, Ablah E, Wetta-Hall R, et al. Stigma and safe havens: a
medical sociological perspective on African-American female epilepsy
patients. Epilepsy Behav 2005;7:106–15.
 Zwaanswijk M, Van der Ende J, Verhaak PF, et al. Factors
associated with adolescent mental health service need and utilization.
J Am Acad Child Adolesc Psychiatry 2003;42:692–700.
 Aneshensel CS, Sucoff CA. The neighborhood context of adolescent
mental health. J Health Soc Behav 1996;37:293–310.
 Kodjo CM, Auinger P. Predictors for emotionally distressed adoles-
cents to receive mental health care. J Adolesc Health 2004;35:368–73.
 Wynaden D, Chapman R, Orb A, et al. Factors that influence Asian
communities’ access to mental health care. Int J Ment Health Nurs
 Gardner W, Kelleher KJ, Wasserman R, et al. Primary care
treatment of pediatric psychosocial problems: a study from pediatric
research in office settings and ambulatory sentinel practice network.
 Harpaz-Rotem I, Rosenhek RA. Prescribing practices of psychiatrists
and primary care physicians caring for children with mental illness.
Child Care Health Dev 2006;32:225–37.
 Collings J. Psychosocial well-being and epilepsy: an empirical study.
 Kwong KL, Wong SN, So KT, et al. Parental perception, worries
and needs in children with epilepsy. Acta Paediatr 2000;89:593–6.
 Loonen HJ, Derkx BH, Griffiths AM. Pediatricians overestimate
importance of physical symptoms upon children’s health concerns.
Med Care 2002;40:996–1001.
 Beghi E, Frigeni B, Beghi M, De Compadri P, Garattini L. A review
of the costs of managing childhood epilepsy. Pharmacoecon
 Kuhlthau K, Ferris TG, Beal AC, et al. Who cares for Medicaid-
enrolledchildren with chronic conditions?Pediatrics 2001;108:906–12.
 Newacheck PW, Hung YY, Park MJ, et al. Disparities in adolescent
health and health care: does socioeconomic status matter? Health
Serv Res 2003;38:1235–52.
 Austin J, Harezlak J, Dunn D, Huster G, Rose D, Ambrosius W.
Behavior problems in children before first recognized seizures.
 Caplan R, Arbelle S, Guthrie D, et al. Formal thought disorder and
psychopathology in pediatric primary generalized and complex partial
epilepsy. J Am Acad Child Adolesc Psychiatry 1997;36:1286–94.
 Elger CE, Helmstaedter C, Kurthen M. Chronic epilepsy and
cognition. Lancet Neurol 2004;3:663–72.
 Keating LE. A review of the literature on the relationship of epilepsy
and intelligence in school children. J Ment Sci 1960;106:1042–59.
 Oostrom KJ, Schouten A, Kruitwagen CLJJ, Peters ACB, Jennekens-
Schinkel A. Parents’ perceptions of adversity introduced by upheaval
and uncertainty at the onset of childhood epilepsy. Epilepsia
 Buelow JM, Austin JK, Perkins SM, et al. Behavior and mental
health problems of children with epilepsy and low IQ. Dev Med Child
 Hommet C, Sauerwein HC, De Toffol B, Lassonde M. Idiopathic
 Schouten A, Oostrom KJ, Pestman WR, et al. Learning and memory
of school children with epilepsy: a prospective controlled longitudinal
study. Dev Med Child Neurol 2002;44:803–11.
 Chappell B, Smithson WH. Patient views on primary care services for
epilepsy and areas where additional professional knowledge would be
welcome. Seizure 1998;7:447–57.
 Thom GA, Lee H, Dhillon R, et al. The general practice manage-
ment of epilepsy in Perth, Western Australia. J Clin Neurosci
 Traynor V, Neary S, Bridges-Webb C, et al. Recruiting general
practitioners for survey research. Austr Fam Phys 1993;22:794–5.
K. Smith et al. / Epilepsy & Behavior 11 (2007) 401–408