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Epilepsy & Behavior 10 (2007) 129–133

Psychological services in a pediatric epilepsy clinic: Referralpatterns and feasibility

Janelle L. Wagner a,*, Gigi Smith b

a Division of Developmental Pediatrics, Department of Pediatrics, Medical University of South Carolina, 135 Rutledge Avenue,

P.O. Box 250567, Charleston, SC 29452, USAb Department of Neurosciences and College of Nursing, Medical University of South Carolina, Charleston, SC, USA

Received 24 August 2006; revised 1 November 2006; accepted 3 November 2006Available online 11 December 2006

Abstract

Referral patterns for on-site psychological services were tracked in a pediatric epilepsy clinic at a university medical center. Resultsrevealed that 84 children treated for seizures were referred to an on-site pediatric psychologist. Behavior problems were the overall mostcommon reason for referral; however, boys were more likely to be referred for disruptive behaviors, and girls were more likely to bereferred for internalizing symptoms. Following psychological assessment, brief cognitive-behavioral intervention services were providedon-site in the epilepsy clinic to 39% of children and families. Finally, referral rates for psychological assessment/intervention were likelyfar below the estimated prevalence rates for psychosocial maladjustment in children with epilepsy. Results, therefore, highlight the neces-sity of facilitating increased referrals to mental health providers and provide support for the feasibility of on-site mental health services.� 2006 Elsevier Inc. All rights reserved.

Keywords: Psychological services; Cognitive-behavioral intervention; Psychological referral patterns

1. Introduction

Youth with epilepsy are at a greater risk for psychoso-cial difficulties compared with healthy controls and youthwith other chronic non-central nervous system illnesses[1]. Similar neuropathology for seizures and psychiatric dif-ficulties has been revealed [2]; however, epilepsy also posesmany illness barriers and life challenges, including social,academic, family, and psychological stressors, whichimpact mental health and quality of life [3,4]. Regardlessof etiology, rates of psychopathology in youth with seizuresrange from 21 to 60%, with the most prevalent diagnosisbeing anxiety disorders [5–7]. Despite these prevalencerates, behavioral and emotional symptoms remain largelyunderemphasized and unnoticed by epilepsy health careproviders [8]. Similarly, access to mental health profession-

1525-5050/$ - see front matter � 2006 Elsevier Inc. All rights reserved.

doi:10.1016/j.yebeh.2006.11.002

* Corresponding author. Fax: +1 843 876 1518.E-mail address: wagnerjl@musc.edu (J.L. Wagner).

als is less than optimal, with less than 30% of children withthese symptoms receiving mental health care [7].

The variable nature of epilepsy also presents caregiverswith significant stressors, including hopelessness, loss ofcontrol, and particular parenting challenges (see [9] for areview). Caregivers may lower their expectations and mayreact to seizures with overprotectiveness or excessive con-trol [10,11]. These studies strongly suggest caregiverinvolvement as a critical component of psychological ser-vices for youth with epilepsy.

With increased knowledge of psychological/psychiatriccomorbid conditions in pediatric epilepsy, family stressors,and unmet needs, establishing standards of care for evi-dence-based mental health services has become a priority[12]. In fact, assessment of psychosocial adjustment in chil-dren with epilepsy by a licensed psychologist and/or socialworker with a special interest in children with epilepsy isrecommended [13]. Further, the Epilepsy Foundation hasincreased awareness of and funded research proposals tofurther examine mood symptoms in persons with epilepsy

Table 1Demographic information

GenderFemale 41Male 43

Age2–5 years 136–11 years 2712–17 years 3818–21 years 6

Residencea

Urban 69Rural 15

a As defined by the South Carolina Office of Research and Statistics.

130 J.L. Wagner, G. Smith / Epilepsy & Behavior 10 (2007) 129–133

(www.efa.org), and the American Epilepsy Society nowincludes significant programming on psychological/psychi-atric correlates of epilepsy at the annual convention(www.aesnet.org). The question then becomes- how dowe improve access to psychological services for youth withepilepsy?

A single study could be located that examined psychol-ogy referral patterns in a pediatric epilepsy clinic. Williamsand colleagues [14] followed 533 children in a medical uni-versity-based epilepsy clinic over 2 years. A psychologistscreened for learning and behavior problems, providedbrief psychological interventions, and addressed questionsconcerning the cognitive effects of seizures and anticonvul-sants. Brief interventions, which were focused on accep-tance of diagnosis, discipline, disclosure of medicalstatus, myths about epilepsy, medication compliance, andconcerns over side effects of antiepileptic drugs, were pro-vided to 19% of children and families. As this is the onlyrecently published representation of psychological servicesfor youth with epilepsy, the aim of the present study was toexamine psychological referral questions and services pro-vided in a pediatric epilepsy clinic.

2. Methods

Over an 18-month period, 2117 unique children were seen for a pri-mary diagnosis of epilepsy in an outpatient pediatric neurology clinic.Eighty-four of these children were referred to a pediatric psychologist,who provided services within the pediatric epilepsy clinic. Sixty-six percentof these psychological referrals were made by a nurse practitioner, and34% of the referrals by three pediatric neurologists. Behavioral consulta-tion sessions, which involved socioemotional and behavioral assessmentand/or intervention, occurred in conjunction with a medical visit or werescheduled at an alternative time. Semistructured interviews [15] and stan-dardized behavior rating scales [16–18] were used as assessment tools.Interventions included evidence-based components of behavior manage-ment, cognitive-behavioral techniques for depression and anxiety, andcoping skill enhancement e.g., [19–21], and were tailored to children withepilepsy and their families. Neurocognitive and autism spectrum disordersassessment was not offered as part of these consultative services, and chil-dren requiring such an assessment were referred to another psychologicalservice within the hospital. Information was obtained through structuredclinical interview, parent report, and/or medical record review, and wasinitially collected solely for clinical purposes. However, data analysiswas conducted in accordance with the guidelines of the institutional reviewboard (IRB).

Table 2Referral question

Behavior problems 42Boys 27/43 (63%)Girls 15/41 (37%)

Adjustment to seizures 24Boys 9/43 (21%)Girls 15/41 (37%)

Anxiety/depressive symptoms 10Boys 3/10Girls 7/10

Other 8

Total 84

3. Results

The ages of the 84 (41 girls; 43 boys) children rangedfrom 2 to 21 (M = 11.36, SD = 4.75), with similar repre-sentation for children and adolescents (see Table 1). Mostchildren were from an urban area (see Table 1). The mostcommon epilepsy diagnosis was complex partial seizures(N = 25). Sixteen (19%) of the 84 children had a preexistingdiagnosis of developmental origin (e.g., mental retardation,autism), 12 (14%) had behavioral/emotional diagnoses[e.g., attention-deficit/hyperactivity disorder (ADHD),anxiety, depression], and two had both developmentaland behavioral/emotional diagnoses. The primary referral

problem was disruptive behaviors, including ADHD symp-toms (N = 42; 50%), with higher rates for boys (27/43,63%) than for girls (15/41, 37%). However, girls were morelikely to be referred for child/family adjustment to seizures(15/41, 37%) than were boys (9/43, 21%) (see Table 2).

To statistically examine potential gender differences inreferral questions, referral questions were recoded[1 = internalizing symptoms (includes adjustment, anxiety,depression), 2 = behavior problems, 3 = other (academicdifficulties, substance use)]. Because of the small cell size,children referred for ‘‘other’’ symptoms (8 children) weredeleted from further analyses. For the remaining 76 chil-dren, a 2 (gender) · 2 (referral question) chi squarerevealed a significant gender difference for referral patterns[v2(1) = 5.11, P = 0.02]. Specifically, girls were significantlymore likely than boys to be referred for internalizing symp-toms (58% vs 33%), and boys were significantly more likelythan girls to be referred for behavior problems (68% vs42%).

Of the 84 children referred, 13% (N = 11) were alreadyreceiving some form of psychological assessment/interven-tion, including psychiatric care. Twelve of the 84 children(14%) were not seen by the pediatric psychologist for avariety of reasons including the following: the familiesdid not show for a scheduled appointment, a neurocogni-tive or autism spectrum disorders assessment was indicated(N = 3), or referrals were made to another mental health

J.L. Wagner, G. Smith / Epilepsy & Behavior 10 (2007) 129–133 131

provider based on available resources. Seventy-two chil-dren then received an initial behavioral consultation, whichconsisted of a structured psychological assessment. Of chil-dren who did not have a previous developmental or emo-tional/behavioral diagnosis (N = 49) as part of the initialpsychological assessment, four were diagnosed by the pedi-atric psychologist with ADHD, two with an anxiety disor-der, two with oppositional defiant disorder (ODD), onewith ADHD and ODD, and one with both depressiveand anxiety disorders.

Behavioral consultation visits ranged from 1 to 14 ses-sions (M = 1.4, SD = 2.53), with most of the childrenand families (91%) receiving between 1 and 5 consultationsessions. Of the 72 children and families seen for an initialbehavioral consultation, 16 received brief cognitive-behav-ioral intervention for internalizing symptoms (anxiety,depression, adjustment to seizures), and 12 received behav-ior management for externalizing behaviors (oppositional,ADHD symptoms). Thus, brief evidence-based psycholog-ical intervention services were provided, following an initialassessment in the epilepsy clinic, to 39% of children andfamilies.

4. Discussion

In the present study, the most common overall referralwas for disruptive behaviors; however, there were genderdifferences in referral patterns, paralleling previous studieswithin general pediatric contexts [22,23]. More specifically,boys were more likely to be referred for disruptive behav-iors, whereas girls were more often referred for internaliz-ing symptoms. However, studies have shown thatinternalizing symptoms are actually more common thanexternalizing behaviors in youth with epilepsy [3], suggest-ing potential referral bias in the present study. In otherwords, behavior problems may be more readily observableand more likely to prompt a psychological referral thaninternalizing problems [24], despite the higher prevalencerates of internalizing symptoms compared with behaviorproblems [25].

In the present study, only a small number of youthreferred for psychological services had a previous(N = 12) or new (N = 10) DSM-IV behavioral/emotionaldiagnosis, despite a much higher referral rate (N = 84)for psychological symptoms. Thus, subclinical symptomsof psychopathology appear to significantly impact the livesof youth with epilepsy and their caregivers. For example,several adult studies have highlighted the importance ofrecognizing subclinical depressive symptoms in adults withepilepsy [26]. Further, the clinical presentation of thesesymptoms in persons with epilepsy creates additional diag-nostic challenges for health care providers [27] and war-rants continued consultation between medical and mentalhealth providers. However, early identification of symp-toms may provide a buffer for the development of clinicaldisorders. Studies have shown the children with new-onsetseizures may have behavioral problems and symptoms that

preceded the onset of epilepsy, providing support for aneurobiological connection between psychological symp-toms and seizures [28,29]. Thus, assessment of these symp-toms, despite the severity and frequency, is warranted atthe initial diagnosis of epilepsy. Indeed, the unique andcomplex presentation of psychological symptoms in chil-dren with epilepsy suggests the need for mental health pro-viders with specialization in psychosocial adjustment toepilepsy [8].

The low referral rates despite the on-site presence of amental health provider observed in this study, as well asin previously published studies of poor accessibility andunderutilization of mental health services [7], may beexplained by a number of reasons, including patient andprovider barriers. For example, in addition to the challeng-es unique to the clinical presentation of psychologicalsymptoms in individuals with epilepsy, both patient andhealth care provider perceptions have been proposed asbarriers to screening of mental health symptoms and needsin individuals with epilepsy [30,31]. For example, patientsor families may minimize symptoms because they fear stig-matization or perceive their symptoms as part of the ‘‘nor-mal’’ progression of epilepsy. Physicians may lack anappreciation for the impact of psychological symptomson quality of life and show skepticism regarding effectivetreatments for these symptoms. Perhaps these barriersexplain why children with epilepsy and comorbid signifi-cant anxiety and depressive symptoms have not receivedappropriate mental health care [8].

Results of the present study and of the study by Wil-liams et al. [14] provide support for the feasibility of psy-chological services delivered in a pediatric epilepsy clinicand underscore the salience, though likely underutilization,of psychological services. On-site psychological servicesprovide particular benefits, including increased accessibilityto mental health providers and joint appointments. Educa-tion and knowledge regarding available mental health ser-vices would be optimized. Additionally, communication,which is critical to a child’s treatment, is enhanced betweenmultidisciplinary providers [32]. Stigma associated withmental health may be reduced by collaborative provisionof physical and psychological care within the same setting[33]. And, finally, cost savings upward of 27% when behav-ioral health is integrated with physical health also provide astrong message to providers and insurers about the neces-sity of mental health services [34].

In light of the above findings, the following recommen-dations are provided to facilitate psychological services in apediatric epilepsy clinic. As physicians often underestimatethe impact of patients’ stressors, environment, family, andfears [35], brief measures to screen for psychosocial difficul-ties can be used to inform referrals to mental health provi-ders. Though there are no currently available screeningmeasures specifically for use in children with epilepsy, gen-eral behavior checklists have demonstrated validity in thepediatric epilepsy population [36]. Empirical support forevidence-based psychological interventions that improve

132 J.L. Wagner, G. Smith / Epilepsy & Behavior 10 (2007) 129–133

compliance and quality of life would also likely impactphysicians’ screening and referral to mental health services[31]. Indeed, a small body of evidence-based psychologicalinterventions is accumulating; however, comprehensiverandomized clinical trials are necessary before implicationsof effectiveness of psychosocial interventions for youthwith epilepsy can be surmised (see [37] for a review). Untilsuch interventions are available, psychologists can useevidence-based assessment and intervention protocolsprovided by the fields of child/adolescent psychology(www.clinicalchildpsychology.org) and pediatric psycholo-gy (www.apa.org/divisions/div54). Interventions that focuson changing youth’s perceptions and enhancing copingskills and self-efficacy [21] appear salient for use with youthwith epilepsy. In addition, protocols that target behaviormanagement in young children [19] and communication/problem solving with older youth and caregivers [38] willlikely be beneficial.

In conclusion, this study has several limitations. Themost critical limitation is that the study involves a nonran-domized sample of convenience and is thus subject toascertainment bias, which limits the generalizability ofthe findings. For example, patients who were referred tothe on-site psychologist may have a stronger relationshipwith their referring provider (e.g., nurse practitioner).The sample may also represent children with more severesymptoms because they are more likely to be referred,although the current study results do not support thisbecause few DSM-IV diagnoses were made. Another limi-tation is that this study examines patterns of referral to amental health professional in a pediatric epilepsy clinicbut does not address overall mental health referrals. Infor-mation about mental health referrals and service utilizationfor the 2033 children who were not referred to the on-sitepsychologist is not available due to privacy regulations.Further, for the 84 referred children, information regardingmedical insurance coverage and socioeconomic status wasnot available; thus we are not able to discern whether therewere differences in show rates as a function of insurance orsocioeconomic status. Additionally, the provider in the cur-rent study was available only part-time, which may havelimited the accessibility of psychological services.

Other limitations involve lack of available informationabout the interventions that were delivered. Specificdetails of the effectiveness of the intervention are beyondthe scope of this article for several reasons. Youth wereseen for different symptoms (e.g., internalizing vs exter-nalizing behaviors), and thus treatment strategies andoutcome measures differ. The number of youth whoreceived intervention (16 children seen for anxiety and/or depression; 12 seen for behavior management) issmall; therefore, there is not enough power to detectchange within specific treatment groups over time. Final-ly, as the services presented in this study were solely clin-ical in nature, structured assessment of satisfaction withservices was not obtained. The limitations of this studyprovide important aims for future researchers to design

and implement psychosocial interventions for youth withepilepsy.

Acknowledgments

The authors thank Pam Ferguson, Ph.D., for statisticsconsultation, and David Griesemer, M.D., for promotingaccess to psychological services in the epilepsy clinic.

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