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Summary: Purpose: This study examined the relation between psychiatric diagnosis and mental health services in children with epilepsy and the associated demographic, cognitive, linguistic, behavioral, and seizure-related variables.
Methods: The Kiddie Schedule for Affective Disorders and Schizophrenia (K-SADS), the Child Behavior Checklist, the Test of Language Development, and the Wechsler Intelligence Scale for Children–Revised (WISC-R) were administered to 114 children, aged 5 to 16 years, with either complex partial seizures (CPS) or primary generalized with absence (PGE, petit mal). A Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) diagnosis and information regarding mental health services were derived from the K-SADS.
Results: Although ∼60% of the subjects had a DSM-IV psychiatric diagnosis, >60% received no mental health treatment. Absence of mental health care was associated with younger age, less parental education, limited number of antiepileptic drugs (AEDs; i.e., one or none), and higher verbal IQ. In addition, children with PGE and a single psychiatric diagnosis were less likely to have a history of mental health treatment.
Conclusions: This is the first study to demonstrate unmet mental health need in a large sample of children with CPS and PGE. The study's findings suggest that parents and clinicians should be aware of the mental health needs of children with epilepsy, particularly if they have one or more of the identified risk factors.
For more than three decades, investigators have documented psychopathology associated with pediatric epilepsy. In one of the original, community-based studies, 29% of children with uncomplicated epilepsy had a higher incidence of psychiatric disturbances relative to 12% of children with chronic, nonneurologic illnesses, and to 6.6% in the general population (1,2). More recently, in studies with children recruited from community and university-based pediatric neurology clinics, the presence of behavioral disturbances was demonstrated in 21–32% of children with epilepsy by using the Child Behavior Checklist (3–5), in 23–26% with the Child Depression Inventory (5,6), in 48% with the Rutter scale (7), and in 55–60% with the Kiddie Schedule for Affective Disorders and Schizophrenia (K-SADS) (8,9). Although the wide range of psychopathology might reflect the use of different rating and diagnostic instruments, an overall rate of 21 to 60% in these studies represents an increased risk of ≥3–6 times, as compared with the general population.
The pervasive and enduring impact of epilepsy on behavior in children is further emphasized by the work of Austin et al. (3) and Dunn et al. (4). Identification of behavioral problems in children 6 months before the first recognized seizure, especially in those with subsequent seizures, suggests that psychopathology may be integrally linked to epilepsy. Considering rates of psychopathology in adults with epilepsy as high as 80%(10–12), these findings imply that behavioral difficulties might develop in early childhood and persist into adulthood in patients with epilepsy.
In terms of the type of psychopathology, several investigations have identified a wide variety of psychiatric symptoms including anxious (6,8), depressive (5,6,8,13), disruptive (8,14,15), and psychotic symptom (16). In addition, children and adolescents with epilepsy are at increased risk for suicidal ideation and suicidal attempts (6,9,17,18). These findings underscore the severity of the psychopathology and the mental health needs of children with epilepsy.
Nevertheless, only a few studies have examined whether children with epilepsy receive mental health services. Based on a review of records and parental interviews of 44 children with epilepsy, Ettinger et al. (6) found rates of 26% and 16% of depression and anxiety, respectively. However, none of these children had been previously identified or treated for these psychiatric symptoms. Similar findings were demonstrated by Dunn et al. (5), who suggested that misinterpretation of psychiatric symptoms as a manifestation of seizures or a side effect of antiepileptic drugs (AEDs) might be responsible for inadequate psychiatric assessment and treatment in childhood epilepsy (19). These findings highlight the importance of determining whether children with epilepsy receive appropriate mental health care.
There also have been no studies on the relation between demographic factors and mental health treatment in childhood epilepsy. Demographic factors, however, have generally been inconsistent predictors of psychopathology in this population. Some studies have identified more boys with behavioral problems (20–22), particularly disruptive disorders (21,23). Other studies report no gender differences (5,6,24–27) or greater risk in girls (13,28). Similar conflicting findings have been demonstrated for chronologic age (5,6,25,26,29). Other demographic factors associated with increased risk for behavioral problems include lower socioeconomic status (SES) (5,13,21,30–32), less parental education (33), and increased family stress (25,28).
The association of seizure-related variables (i.e., seizure type, seizure control, EEG lateralization, AEDs, age at onset, duration of epilepsy) with psychopathology also has been extensively examined in childhood epilepsy (for review, see 34). In terms of seizure type, children with complex partial seizures (CPS) historically were described as antisocial and aggressive (1,35), whereas those with primary generalized seizures with absence (PGE) were characterized as neurotic (35). However, more recent investigations have demonstrated that children with PGE and CPS have similar rates and types of psychopathology (i.e., disruptive, affective, and anxiety disorders) (8,9,36).
Regarding other seizure-related variables, poor seizure control (3,4,7,8,21,23,29,37–39), a left temporal focus (16,20,23,40), and treatment with AEDs, especially in high doses or in combination (34,41), are associated with behavioral disturbances. Additional predictors of psychopathology in this population include both early age at onset and longer duration of epilepsy (21,38,40,42,43).
As highlighted by several studies, cognitive impairment is another important correlate of psychopathology in children with epilepsy (1,2,23). Camfield et al. (24) demonstrated that the severity of neuropsychological deficits in children with epilepsy is related to increased psychopathology in these children. More recently, IQ has been consistently associated with the presence or absence of a psychiatric diagnosis (8), the severity of behavioral deviance (9), and the severity of thought disorder (42,44–46). Last, cognitive impairment is associated with poor seizure control (47–49), which, as discussed previously, is linked to increased risk for psychopathology (21,24,34,50).
The study presented here determined whether children with CPS and PGE with psychopathology received mental health services. It also examined the demographic, cognitive, linguistic, behavioral, and seizure-related variables associated with both mental health services and psychopathology in these two groups of children with epilepsy. We predicted that most children who meet criteria for a psychiatric diagnosis would not be receiving mental health interventions. Based on the previously reviewed studies, we posited that male gender, lower SES, presence of various seizure-related variables (i.e., type of seizure disorder, poor seizure control, AED polytherapy, early age at onset, increased duration of illness), the presence of cognitive and linguistic deficits, as well as increased psychiatric morbidity, would be associated with mental health care.
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This is the first study to demonstrate unmet mental health need in a large sample of children with CPS and PGE. Although ∼60% of the subjects were diagnosed with a psychiatric diagnosis, >60% did not have a history of mental health services. Absence of mental health care was associated with younger age, less parental education, AED monotherapy (or none), and higher verbal IQ. In addition, children with PGE and a single psychiatric diagnosis were less likely to have a history of mental health treatment.
In the current study, the rates of children with a psychiatric diagnosis and percentages with CBCL scores in the clinical range were comparable with other investigations in children with epilepsy (3,4,8,9,29). Rates of behavioral disturbance in neurologic conditions, such as epilepsy, are consistently higher as compared with other chronic medical conditions (nearly 3 times) (58,59) and with the general youth population (nearly 5 times) (1,13). However, to date, other than the current investigation, little information exists on how many of these children receive mental health care and the associated demographic, seizure-related, cognitive, and linguistic factors.
The discrepancy between the high rate of psychiatric diagnosis (60%) and low rate of mental health services (33%) is, however, concerning. Because other studies have demonstrated severe psychopathology including suicide (6,9,17,18), early identification and treatment of psychiatric problems in this population is particularly relevant.
Regarding demographic factors, as in studies involving children with chronic illness (60) or those seen for routine medical care (61), we also identified an association of lower parental educational status with absence of mental health care in children with CPS or PGE. This finding suggests that greater education may facilitate understanding or awareness of the child's illness, his or her emotional status, and the link between the brain and behavior.
The mixed referral source (i.e., patients from both the community and university-based pediatric neurology clinics) in the current study is similar to that in many of those previously described studies, which examined rates of psychopathology in pediatric epilepsy (3–5,8,9). Although the number of children from university-based clinical sources (55%) was slightly greater than from the community source (45%), this difference was not related to the presence or absence of mental health treatment. Therefore absence of psychiatric care in those children with epilepsy and psychopathology cannot be attributed to their referral source.
From the developmental perspective, the association of mental health services with older chronologic age suggests that sufficient time from the onset of the epilepsy is required before psychiatric problems are identified and treated. For those with a newly diagnosed seizure disorder, the time needed by the family and child to accept this diagnosis may delay psychiatric interventions, which may be necessary even at this early stage (3,4). Similarly, the initial focus of both clinicians and parents on seizure control also could obscure recognition of possible mental health issues. Finally, many parents may lack the awareness of the potential impact of epilepsy on the child's development and behavior (8). Additional studies are required to examine if these factors play a role in this time lag until children with CPS and PGE receive mental health care. Such studies are important because during this time, the child may experience fairly severe psychopathology, including suicidal ideation, as a result of the cumulative impact of epilepsy on the development of the children's behavior (8), cognition (62), communication (42), and language (42,44).
Like psychopathology (1,2,8,9,24), mental health care also is associated with lower Verbal IQ in children with CPS or PGE. Our earlier findings suggest that children with average IQ scores have significant, but unrecognized, psychopathology (8,9). Perhaps children with CPS or PGE with good verbal skills are viewed as functioning well psychologically; thus despite the presence of psychiatric problems, these children are underdiagnosed and undertreated.
Among the seizure-related variables examined in the current investigation (i.e., type of seizure disorder, seizure control, age at onset, duration of epilepsy), only AED polytherapy was associated with a history of mental health services. Although past studies demonstrated an association of AED polytherapy (34,41) with behavioral disturbances, this is the first time that an association with mental health treatment has been demonstrated. Clearly, one interpretation of these findings is that those individuals requiring multiple AED agents are more likely to have behavioral or cognitive side effects, which may prompt psychiatric referral. Alternatively, the need for AED polytherapy also may suggest to parents and/or clinicians that the child is “more ill” and thus facilitate psychiatric interventions.
Although seizure type per se was not a significant factor in the model, the presence of CPS, in combination with comorbid psychiatric diagnoses, was significantly associated with a history of mental health treatment (see Table 3). Thus it seems that to receive mental health services, a child must have a seizure disorder with more overt clinical manifestations (i.e., CPS), in addition to having severe (i.e., comorbid) psychiatric problems. Perhaps the parents' and neurologists' focus mainly on seizures enables them to assume that some of the children's behavioral difficulties are merely manifestations of the seizure disorder (19,60). Similarly, the lack of apparent ictal manifestations in PGE, as well as the common belief that these children have no psychological difficulties, might prevent these children from receiving appropriate services.
In terms of other behavioral factors, the CBCL, a widely used behavioral rating scale, did not identify those children who received mental health interventions. Similarly, in an earlier study, we found that CBCL scores were not good predictors of the presence of a psychiatric diagnosis in children with CPS and PGE (9). Therefore the CBCL might have only limited value in identifying psychopathology in children with epilepsy who clearly warrant mental health interventions.
In terms of the study's limitations, we also recognize that the use of language age scores derived from different instruments (TOLD primary, TOAL Intermediate, TOAL) does not rule out the possible role of undiagnosed linguistic deficits as an associated factor. In addition, because this study was not designed as an epidemiologic investigation, the study's findings are limited by the lack of detailed information about mental health treatment (i.e., what type, provided by whom, efficacy, duration, barriers to care). The findings imply the need for well-designed mental health services studies that address these issues in this population. Last, the focus on children with either CPS or PGE and average IQ scores limits the generalizability of the study's findings to children with epilepsy.
In conclusion, despite relatively high rates of psychopathology in children with CPS and PGE, few children receive mental health treatment. Therefore clinicians should carefully evaluate children with these seizure disorders, who are young, have higher Verbal IQ scores, and parents with less than a high school education and require a limited number of AEDs (i.e., one or none). In addition, all children with PGE warrant careful assessment, including those without severe behavioral problems.