Health-related quality of life (HRQOL) is an important outcome measure in clinical research. Given the psychosocial and behavioral difficulties associated with pediatric epilepsy, evaluating HRQOL in this patient population is of particular importance. Though HRQOL has been examined in pediatric patients receiving focal resection or pharmacological (antiepileptic drug; AED) treatment, it has not been assessed in patients receiving hemispherectomy (HE) for intractable epilepsy. The current study evaluated HRQOL in a sample of pediatric HE cases (N = 26) using previously validated questionnaires relative to surgical (N = 30) and nonsurgical (N = 84) comparison groups. Compared with focal resection and nonsurgical patients, parents of children who received HE reported similar levels of HRQOL. In surgical cases, worse HRQOL was correlated with residual seizure frequency. In both surgical and nonsurgical cases, female gender, higher AED load, and lower functional independence predicted worse HRQOL. Interestingly, HE status (i.e., having undergone HE) predicted fewer epilepsy-related limitations. Consistent with previous findings, AED load, in addition to lower functional abilities, appear particularly detrimental to life quality in pediatric epilepsy. HE, however, is not associated with increased risk for poor HRQOL. When considered in light of the multiple, significant risk factors for poor outcome associated with HE, children who undergo the procedure fare surprisingly well.

Purpose: ADHD is reported as a frequent comorbidity in pediatric epilepsy. We aimed to clarify the prevalence of ADHD, its neurological correlates and the role of ADHD in health-related quality of life (HRQOL) in children with severe epilepsy.Method: Data from the ADHD Rating Scale-IV (ADHD-RS-IV) from 203 children (mean age = 11.8, SD = 3.8) from a tertiary center serving children with severe epilepsy were reviewed.Results: Inattention was frequently elevated in the sample (40% vs. 18% for hyperactivity-impulsivity). Age of onset, epilepsy duration, and seizure frequency were not related to severity of inattention or hyperactivity-impulsivity. Over 60% of children met screening criteria for ADHD-Inattentive subtype (ADHD-I) or ADHD-Combined Inattentive/Hyperactive-Impulsive subtype (ADHD-C). Compared to ADHD-I, ADHD-C was associated with earlier onset of seizures, generalized epilepsy, lower adaptive level, and in normally developing children, a higher degree of intractability compared to ADHD-I. ADHD-I was more prevalent in localization-related epilepsy, and there was a trend for a higher use of AEDs with cognitive side effects in this group. ADHD was associated with poor HRQOL: children with ADHD-I and ADHD-C had a two- and four-fold likelihood of low HRQOL, respectively, compared to non-ADHD children.Conclusions: Children seen at tertiary care centers for severe epilepsy are at high risk for attention problems and ADHD, and ADHD is a significant predictor of poor HRQOL in epilepsy, particularly in the case of ADHD-C. ADHD occurring in the context of severe epilepsy appears to be associated with specific neurological characteristics, which has implications for comorbidity models of ADHD and epilepsy.

The Behavior Rating Inventory of Executive Function (BRIEF) is a standardized rating scale that provides information about the nature and extent of executive function deficits displayed by children and adolescents in daily life. BRIEF protocols completed by parents of 80 children with intractable epilepsy were evaluated with respect to prevalence and severity of scale elevations in the sample, and also with respect to factor structure. Overall, the sample was rated as having significantly more executive function problems than healthy children in the BRIEF standardization sample; elevations on the Working Memory and Plan/Organize scales were most frequently seen. Fully 36% of the sample had four or more significantly elevated scales. However, 31% of the sample had no clinically elevated scales, indicating that executive difficulties, though frequent, are not necessarily characteristic of all children with severe epilepsy. As in the validation studies reported in the manual, a two-factor solution emerged from a principal factor analysis of BRIEF scales. However, the factor structure as given in the manual was not entirely replicated; specifically, the Monitor scale was found to load equivalently on both factors. The results of this study suggest that a substantial proportion of children with intractable epilepsy display significant executive function deficits in daily life. Research into the relationship of BRIEF scores to other measures of executive functioning in children with epilepsy is needed to further clarify its clinical utility.

Summary: Purpose: Based on prior research indicating poor health‐related quality of life (HRQOL) in children with attention‐deficit/hyperactivity disorder, we investigated (1) whether executive functioning deficits were related to poor HRQOL in children with epilepsy, (2) how important these variables were in comparison to known predictors of HRQOL such as neurological factors, and (3) the extent to which clinical‐level impairments in executive dysfunction predispose children to low HRQOL. Method: Data included scores on the Behavior Rating Inventory of Executive Function (BRIEF) and HRQOL scales (The Impact of Childhood Illness Scale [ICI] and Hague Restrictions in Epilepsy Scale [HARCES]) for 121 children (mean age = 11.9, SD = 3.6) from a tertiary center serving children with severe epilepsy. Results: Correlations between the BRIEF and ICI total and subscore domains (child, parent, family, and treatment) were generally significant and moderate (e.g., r ≥ 0.30, p ≤ 0.001). BRIEF Global Executive Composite, number of antiepileptic drugs (AEDs), number of prior AEDs, and adaptive level all emerged as significant and unique predictors of HRQOL (R2= 0.36, adj. R2= 0.33, p < 0.0001). A clinically elevated BRIEF was associated with a twofold risk of low HRQOL (odds ratio = 2.21, p = 0.03). Conclusions: Executive dysfunction appears to exert a broad adverse influence on HRQOL in children with epilepsy, with clinical‐level impairments in executive dysfunction contributing to a twofold increase in the likelihood of poor HRQOL. The constellation of executive dysfunction, low adaptive level, high medication load, and a history of several failed AEDs are risk factors for poor HRQOL in children with epilepsy.

PURPOSE:Validity studies on health-related quality of life (HRQOL) scales for pediatric epilepsy are few, and cross-validation with other samples has not been reported. This study was designed to assess the validity of three parent-rated measures of HRQOL in pediatric epilepsy: (a) the Impact of Childhood Illness Scale (ICI), (b) the Impact of Child Neurologic Handicap Scale (ICNH), and (c) the Hague Restrictions in Epilepsy Scale (HARCES).METHODS:Retrospective data were examined for 44 children with intractable epilepsy. Validity was assessed by evaluating differences across epilepsy severity groups as well as correlations between HRQOL scales and neurologic variables (seizure severity, epilepsy duration, current/prior antiepileptic medications) and psychosocial measures (emotional functioning, IQ, social skills, adaptive behavior). Scale overlap with a global QOL rating also was assessed.RESULTS:The HRQOL measures were moderately to highly intercorrelated. The scales differed in terms of their associations with criterion measures. The HARCES was related to the highest number of neurologic variables and the ICNH to the fewest. All three scales were related to psychosocial functioning and to global quality of life.CONCLUSIONS:The results of this study suggest that the three measures are likely adequate measures of HRQOL for use in intractable childhood epilepsy. The measures were highly intercorrelated, and they were all broadly related to criterion measures reflecting specific domains of HRQOL as well as global QOL. Some differences between scales emerged, however, that suggest care in choosing HRQOL instruments for children with epilepsy.