Quality Of Life In Childhood Epilepsy Research Articles

Neighborhood disadvantage and health-related quality of life in pediatric epilepsy

IntroductionWhile several demographic and epilepsy-specific characteristics are associated with diminished HRQoL in children and adolescents with epilepsy, prior investigations have failed to incorporate and address the influence of broader social contextual factors on functional outcomes. To address this gap, the purpose of the current study was to investigate the role of neighborhood disadvantage on HRQoL, including the extent to which familial and seizure-specific risk factors are impacted. MethodsData included parental ratings on the Quality of Life in Childhood Epilepsy (QOLCE) questionnaire for 135 children and adolescents with epilepsy, and the Area Deprivation Index (ADI) to measure neighborhood disadvantage. Bivariate correlations were conducted to identify significant associations with neighborhood disadvantage, followed by a three-stage hierarchical multiple regression to predict HRQoL. Follow-up binary logistic regressions were used to determine the risk conferred by neighborhood disadvantage on sociodemographic, seizure-specific, and HRQoL factors. ResultsModerate associations between neighborhood disadvantage and familial factors, including parental psychiatric history and Medicaid insurance, were identified, while disadvantage and greater seizure frequency were marginally associated. Neighborhood disadvantage independently predicted HRQoL, and was the sole significant predictor of HRQoL when familial factors were incorporated. Children with epilepsy living in disadvantaged areas were four times more likely to have diminished HRQoL, five times more likely to live with a parent with a significant psychiatric history, and four times more likely to reside with a family receiving Medicaid insurance. ConclusionsThese results highlight the importance of identifying high-risk groups, as the cumulative burden of social context, familial factors, and seizure-specific characteristics contribute to lower HRQoL in pediatric epilepsy which disproportionately affects patients from lower-resourced backgrounds. Potentially modifiable factors such as parental psychiatric status exist within the child’s environment, emphasizing the importance of a whole-child approach to patient care. Further exploration of disadvantage in this population is needed to better understand these relationships over time.

Effects of Cannabidiol on Adaptive Behavior and Quality of Life in Pediatric Patients With Treatment-Resistant Epilepsy.

Background and PurposeData regarding the effects of cannabidiol (CBD) on the quality of life (QOL) are currently inadequate. We assessed the QOL of pediatric patients with epilepsy who were treated with CBD.MethodsThis prospective, open-label study included pediatric and adolescent patients (aged 2–18 years) with Dravet syndrome or Lennox-Gastaut syndrome. Oral CBD was administered at 10 mg/kg/day. The Korean version of the Quality Of Life in Childhood Epilepsy (QOLCE) questionnaire was administered when CBD treatment began and again after 6 months. Adaptive behavior was measured using the Korean versions of the Child Behavior Checklist (K-CBCL) and the second edition of the Vineland Adaptive Behavior Scales (Vineland-II).ResultsThis study included 41 patients (11 with Dravet syndrome and 30 with Lennox-Gastaut syndrome), of which 25 were male. The median age was 4.1 years. After 6 months, 26.8% (11/41) of patients experienced a ≥50% reduction in the number of seizures. The total score for the QOLCE questionnaire did not change from baseline to after 6 months of CBD treatment (85.71±39.65 vs. 83.12±48.01, respectively; p=0.630). The score in the motor skills domain of Vineland-II reduced from 48.67±13.43 at baseline to 45.18±14.08 after 6 months of treatment (p=0.005). No other Vineland-II scores and no K-CBCL scores had changed after 6 months of CBD treatment.ConclusionsCBD is an efficacious antiseizure drug used to treat Dravet syndrome and Lennox-Gastaut syndrome. However, it did not improve the patient QOL in our study, possibly because all of our patients had profound intellectual disabilities.

Executive function and depressed mood are independently disruptive to health-related quality of life in pediatric temporal lobe epilepsy

ObjectiveYouth with temporal lobe epilepsy (TLE) are at increased risk of depressive features and diminished health-related quality of life (HRQOL). To assist in the development of future behavioral interventions for youth with TLE, the current study explored potential pathways by which executive functioning (EF) and depressive features impinge upon HRQOL in the context of psychosocial and seizure-specific factors. MethodsData included parental ratings on the Behavior Assessment System for Children (BASC-2), Behavior Rating Inventory of Executive Function (BRIEF), and the Quality of Life in Childhood Epilepsy (QOLCE) questionnaires for 82 children (Age = 11.99, SD = 3.80) with TLE. Observed path analysis was used to simultaneously investigate the determinants of HRQOL in pediatric TLE. Indirect effects were evaluated with bootstrap analyses. ResultsBoth executive dysfunction and depressive features were negatively linked to child HRQOL, and, furthermore, EF and HRQOL were indirectly connected by depressive features. In addition, depressive features were linked to lower EF, current antiepileptic drug (AED) regimen, and the presence of hippocampal sclerosis. Diminished EF was linked to parental psychiatric history and family stress; EF mediated the relationship of parental psychiatric history and family stress on both depressive features and diminished HRQOL. Finally, a more complicated AED regimen and higher HRQOL were indirectly connected by depressive features. ConclusionThis study underscores the importance of child depressive features and EF along with environmental and epilepsy-specific factors on HRQOL in pediatric TLE.

Epilepsy-specific patient-reported outcome measures of children's health-related quality of life: A systematic review of measurement properties.

ObjectiveTo identify and appraise published evidence of the measurement properties for epilepsy‐specific patient‐reported outcome measures (PROMs) of children's health‐related quality of life (HRQoL).MethodsWe searched multiple databases for studies evaluating the measurement properties of English‐language epilepsy‐specific PROMs of children's HRQoL. We assessed the methodological quality using the COnsensus‐based Standards for the selection of health Measurement INstruments (COSMIN) guidance. We extracted data about the content validity, construct validity, internal consistency, test‐retest reliability, proxy reliability, responsiveness, and precision, and assessed the measurement properties with reference to standardized criteria.ResultsWe identified 27 papers that evaluated 11 PROMs. Methodological quality was variable. Construct validity, test‐retest reliability, and internal consistency were more commonly assessed. Quality of Life in Childhood Epilepsy (QoLCE) questionnaires are parent‐reported and evaluated more than other PROMs; QoLCE‐55 has good and replicated evidence for structural and construct validity and internal consistency. Health‐Related Quality of Life Measure for Children with Epilepsy (CHEQoL) has both child and parent‐reported versions and good evidence of content, structural, and construct validity.SignificanceThis review identified two leading candidate epilepsy‐specific PROMs for measuring health‐related quality of life in children. Establishing evidence of the responsiveness of PROMs is a priority to help the interpretation of meaningful change scores.

Seizure freedom improves health-related quality of life after epilepsy surgery in children.

To determine whether epilepsy surgery improved health-related quality of life (HRQoL) and whether seizure freedom after surgery mediated the improvement in HRQoL. This multicenter cohort study compared HRQoL after epilepsy surgery to pharmacological management in children with drug-resistant epilepsy (DRE). HRQoL was measured using the Quality of Life in Childhood Epilepsy (QOLCE) questionnaire at baseline and 1-year follow-up. The mediator between treatment type and HRQoL was seizure freedom. Two hundred and thirty-seven patients were recruited (surgery group: n=147 [92 males, 45 females]; pharmacological group: n=90 [53 males, 37 females]). Mean age at seizure onset was 6 years (SD 4y 4mo) in the surgical group and 6 years 1 month (SD 4y) in the pharmacological group. The odds ratio of seizure freedom was higher for the surgery versus pharmacological group (β=4.24 [95% confidence interval {CI}: 2.26-7.93], p<0.001). Surgery had no direct effect on total QOLCE score at 1-year (β=0.24 [95% CI -2.04 to 2.51], p=0.839) compared to pharmacological management, but had an indirect effect on total QOLCE that was mediated by seizure freedom (β=0.92 [95% CI 0.19-1.65], p=0.013), adjusting for baseline total QOLCE score. Surgery had a direct effect on improving social function (p=0.043), and an indirect effect on improving physical function (p=0.016), cognition (p=0.042), social function (p=0.012) and behavior (p=0.032), mediated by seizure freedom. Greater seizure freedom achieved through epilepsy surgery mediated the improvement in HRQoL compared to pharmacological management in children with DRE. Seizure freedom is higher after pediatric epilepsy surgery compared to pharmacologically managed epilepsy. Surgery indirectly improves health-related quality of life (HRQoL) mediated by seizure freedom compared to pharmacological management. Surgery has a direct effect on improving social function relative to pharmacological management. Baseline HRQoL was an important predictor of HRQoL after treatment.

Dosage Related Efficacy and Tolerability of Cannabidiol in Children With Treatment-Resistant Epileptic Encephalopathy: Preliminary Results of the CARE-E Study.

Purpose: There is uncertainty regarding the appropriate dose of Cannabidiol (CBD) for childhood epilepsy. We present the preliminary data of seven participants from the Cannabidiol in Children with Refractory Epileptic Encephalopathy (CARE-E) study.Methods: The study is an open-label, prospective, dose-escalation trial. Participants received escalating doses of a Cannabis Herbal Extract (CHE) preparation of 1:20 Δ9-tetrahydrocannabinol (THC): CBD up to 10–12 mg CBD/kg/day. Seizure frequency was monitored in daily logs, participants underwent regular electroencephalograms, and parents filled out modified Quality of Life in Childhood Epilepsy (QOLCE) and Side Effect rating scale questionnaires. Steady-state trough levels (Css, Min) of selected cannabinoids were quantified.Results: All seven participants tolerated the CHE up to 10–12 mg CBD/kg/day and had improvements in seizure frequency and QOLCE scores. CSS, Min plasma levels for CBD, THC, and cannabichromene (CBC) showed dose-independent pharmacokinetics in all but one participant. CSS, Min CBD levels associated with a >50% reduction in seizures and seizure freedom were lower than those reported previously with purified CBD. In most patients, CSS, Min levels of THC remained lower than what would be expected to cause intoxication.Conclusion: The preliminary data suggest an initial CBD target dose of 5–6 mg/kg/day when a 1:20 THC:CBD CHE is used. Possible non-linear pharmacokinetics of CBD and CBC needs investigation. The reduction in seizure frequency seen suggests improved seizure control when a whole plant CHE is used. Plasma THC levels suggest a low risk of THC intoxication when a 1:20 THC:CBD CHE is used in doses up to 12 mg/kg CBD/kg/day.

Evaluation of the Effects of Clobazam on Seizure Control and Quality of Life in Children With Lennox-Gastaut Syndrome: A Pilot Study.

This is a prospective study of children with Lennox-Gastaut syndrome receiving clobazam as adjunctive therapy. This pilot study aims to examine medication effectiveness as it relates to seizure reduction, as well as improvement in parent-reported behavior and quality of life (QOL). Ten patients with Lennox-Gastaut syndrome aged 3-11 years were enrolled in this 6-week, 4 phase study. Seizure frequency, QOL, and Aberrant Behavior Checklist questionnaires were evaluated at 0, 2, 6, and 10 weeks during the study. Patients showed improvement on indices of QOL, including physical activities (62.5%), well-being (37.5%), cognition (87.5%), social activities (37.5%), behavior (87.5%), general health (50%), and overall QOL (87.5%). The Quality of Life in Childhood Epilepsy (QOLCE) questionnaire revealed significant improvement in cognition (P = .008), social activities (P = .049), behavior (P = .038), and overall QOL (P = .018). The Aberrant Behavior Checklist exhibited a trend toward improvement in hyperactivity. There was improvement in all patients with documented baseline seizures (8/10), with 5 showing significant improvement (95%-100% reduction) and 3 showing minor improvement (7%-23% reduction). Statistically significant improvement in areas of cognition, social activities, behavior, and overall QOL were seen. An overall trend toward a positive well-being was seen in our patients with clobazam, as adjunct therapy for Lennox-Gastaut syndrome in children.

Parental coping and its role in predicting health-related quality of life in pediatric epilepsy

ObjectivePsychosocial difficulties are known to greatly impact the health-related quality of life (HRQOL) of a child with epilepsy, and parental coping is a unique aspect that has not been examined in relation to HRQOL in the pediatric population with epilepsy. This study assessed the relationship of parental coping with HRQOL and other clinical and sociodemographic factors. MethodsData included parental ratings on the Illness Cognition Questionnaire—Parent (ICQ-P) and the Quality of Life in Childhood Epilepsy (QOLCE) questionnaire for 108 children and adolescents with epilepsy (mean 11.34 years of age). The ICQ-P examines parental coping through constructs of illness cognitions while QOLCE determines overall functioning as indicated by parents. Bivariate correlations were conducted to identify significant associations with parental coping, followed by a multiple linear regression to determine the relative contribution of parental coping on HRQOL. Sociodemographic factors on parental coping were explored with an analysis of covariance. ResultsLonger duration of epilepsy (r = 0.202) and higher HRQOL (r = 0.208) were significantly associated with parental acceptance on the ICQ-P. Higher parental helplessness was significantly associated with female gender of the child (r = 0.262), diminished HRQOL (r = −0.566), greater seizure frequency (r = 0.255), and higher number of prescribed antiepileptic drugs (AEDs) (r = 0.226). Parent-rated perceived benefits did not have significant association with study variables. Multiple linear regression revealed age of seizure onset (β = 0.19, p = 0.05), seizure frequency (β = −0.22, p = 0.01), and degree of parental helplessness (β = −0.50, p ≤ 0.01) as unique predictors of HRQOL. Two separate ANCOVAs revealed no significant associations between maternal education or insurance type on parental helplessness. SignificanceParental coping is significantly related to HRQOL in youth with epilepsy, and elevated feelings of helplessness, along with epilepsy severity, predict lower HRQOL. These findings are the first to demonstrate the unique role of parental coping in HRQOL among youth with epilepsy, and they highlight the importance of providing support to the whole family during pediatric epilepsy treatment.

The influence of endophenotypic, disease-specific, and environmental variables on the expression of anxiety in pediatric epilepsy

Children and adolescents with epilepsy often show higher rates of anxiety, which carries an increased risk for reduced health-related quality of life (HRQOL). The current study assessed the role of parental psychiatric history (i.e., anxiety, depression, and/or bipolar disorder) on the rate of anxiety features in youth seen in a tertiary epilepsy clinic. Data included parental ratings on the Behavior Assessment System for Children (BASC-2) and the Quality of Life in Childhood Epilepsy (QOLCE) questionnaire for 180 children and adolescents (mean age=11.40, SD=3.98). Our results identified clinically elevated anxiety ratings in nearly half the sample (47%) with previous psychiatric history endorsed by 48% of parents. The effect of parental psychiatric history on youth anxiety was found to be significant and associated with a threefold increase in the rate of youth anxiety features. This risk increased to fourfold in refractory epilepsy, and the impact of family psychiatric history is greater in adolescent females and in families that report higher levels of stress. In those families who reported no psychiatric history, anxiety was best predicted by epilepsy-specific factors above and beyond sociodemographic factors. Parental psychiatric history was also identified as a significant risk factor for diminished patient HRQOL, even after accounting for seizure control. These findings highlight the impact of family and epilepsy factors on psychological functioning and offer further support for the strong relationship between parental adjustment and child outcome in pediatric epilepsy.

Quality of Life in Childhood Epilepsy in pediatric patients enrolled in a prospective, open-label clinical study with cannabidiol.

Recent clinical trials indicate that cannabidiol (CBD) may reduce seizure frequency in pediatric patients with certain forms of treatment-resistant epilepsy. Many of these patients experience significant impairments in quality of life (QOL) in physical, mental, and social dimensions of health. In this study, we measured the caregiver-reported Quality of Life in Childhood Epilepsy (QOLCE) in a subset of patients enrolled in a prospective, open-label clinical study of CBD. Results from caregivers of 48 patients indicated an 8.2±9.9-point improvement in overall patient QOLCE (p<0.001) following 12weeks of CBD. Subscores with improvement included energy/fatigue, memory, control/helplessness, other cognitive functions, social interactions, behavior, and global QOL. These differences were not correlated to changes in seizure frequency or adverse events. The results suggest that CBD may have beneficial effects on patient QOL, distinct from its seizure-reducing effects; however, further studies in placebo-controlled, double-blind trials are necessary to confirm this finding.

The relationship of seizure focus with depression, anxiety, and health-related quality of life in children and adolescents with epilepsy.

For youth with epilepsy, comorbid psychiatric conditions, such as depression and anxiety, require further examination as they carry increased risk for reduced health-related quality of life (HRQOL). The current study assessed whether rates of depression, anxiety, and withdrawal behaviors differed based on seizure location. Data included parental ratings on the Behavior Assessment System for Children (BASC-2) and the Quality of Life in Childhood Epilepsy (QOLCE) questionnaire for 132 children and adolescents (mean age=11.34, SD=3.95) with generalized or partial (i.e., frontal [FLE] or temporal lobe epilepsy [TLE]) epilepsy. Our results identified clinically significant internalizing psychopathology in nearly half of our sample (41%). Although rates of internalizing behavior were similar between generalized and partial groups, children and adolescents with TLE demonstrated higher rates of depression compared to youth with FLE. No effects of laterality on internalizing behaviors were identified between TLE and FLE groups. Finally, for youth with TLE, parental depression ratings along with current number of antiepileptic medications (AEDs) were found to be significant barriers to HRQOL above and beyond anxiety, withdrawal, and epilepsy-specific variables. Temporal lobe epilepsy was associated with a two-fold risk of clinically significant depression ratings. These findings highlight the high prevalence of internalizing psychopathology features in pediatric epilepsy and offer further support for the relationship between depression and TLE in children and adolescents with epilepsy.

The role of executive functioning in quality of life in pediatric intractable epilepsy.

Children with epilepsy are vulnerable to executive dysfunction, but the relationship between executive functioning (EF) and quality of life (QOL) in children with epilepsy is not fully delineated. This exploratory study elucidated the relationship between ecological EF and QOL in pediatric intractable epilepsy. Fifty-four consecutively referred pediatric epilepsy surgery candidates and their parents were administered IQ measures, the Behavior Rating Inventory of Executive Function (BRIEF), and the Quality of Life in Childhood Epilepsy (QOLCE) as part of a comprehensive neuropsychological evaluation. A significant difference was found in QOL between those with and without clinical impairments on the BRIEF [t(52)=3.93; p<.001]. That is, children with executive dysfunction had lower overall QOL. All seizure variables and BRIEF scales were associated with overall QOL [F(12, 40)=6.508; p=.001; R2=.661]. Working memory from the BRIEF was the most frequently elevated scale in our sample (57%). Those with executive dysfunction had 9.7 times the risk of having poor QOL. Poor EF control according to behavior ratings is significantly related to QOL in intractable pediatric epilepsy. Identification of executive dysfunction in home environments is an essential component of presurgical evaluations and target for intervention, which may improve QOL.

Executive function and health-related quality of life in pediatric epilepsy.

Children and adolescents with epilepsy often show higher rates of executive functioning deficits and are at an increased risk of diminished health-related quality of life (HRQOL). The purpose of the current study was to determine the extent to which executive dysfunction predicts HRQOL in youth with epilepsy. Data included parental ratings on the Behavior Rating Inventory of Executive Function (BRIEF) and the Quality of Life in Childhood Epilepsy (QOLCE) questionnaire for 130 children and adolescents with epilepsy (mean age=11years, 6months; SD=3years, 6months). Our results identified executive dysfunction in nearly half of the sample (49%). Moderate-to-large correlations were identified between the BRIEF and the QOLCE subscales of well-being, cognition, and behavior. The working memory subscale on the BRIEF emerged as the sole significant predictor of HRQOL. These results underscore the significant role of executive function in pediatric epilepsy. Proactive screening for executive dysfunction to identify those at risk of poor HRQOL is merited, and these results bring to question the potential role of behavioral interventions to improve HRQOL in pediatric epilepsy by specifically treating and/or accommodating for executive deficits.

Effects of parental gender and level of education on the quality of life and general health of pediatric patients with epilepsy: An outpatient cross-sectional survey.

The quality of life (QOL) of children with epilepsy has been widely studied, and several problems related to cognition, behavior, social lives, and physical activity among these children have been reported. Family life and parental care are important aspects of the lives of these patients. The impact of parental education on the QOL of pediatric patients with epilepsy is an understudied topic, especially in developing countries. In this study, we investigated the QOL and general health (GH) of patients with epilepsy presenting at the pediatric neurology clinic at Baqiyatallah Hospital and a private clinic. The Quality of Life in Childhood Epilepsy (QOLCE) questionnaire, which is a 92-item epilepsy-specific questionnaire covering physical activity, well-being, cognition, behavior, social activity, overall QOL, and GH, was used for interviewing parents. A total of 106 patients (m=61, 57.5% and f=45, 42.5%) aged 5-17years (mean: 10.31±2.91) participated in the study. Overall, there was no significant difference between the QOL and GH results of male and female patients. However, the maternal education level had a significant impact on the overall QOL (high school: 3.02±0.85 vs. B.Sc.: 3.67±0.61, p<0.05) and GH (high school: 2.81±0.79 vs. B.Sc.: 3.8±0.94, p<0.05) of male patients, while paternal education had no significant effect. A multiple linear regression showed that the maternal education level had an independently significant association with the physical activity of the patients (p=0.02, CI: 1.4-6.25), and the paternal education level had an independently significant association with the well-being of the patients (p=0.02, CI: 0.43-5.36). In addition, the maternal education level (high school vs. B.Sc.) had a significant effect on physical activity, well-being, cognition, and behavior for all of the patients (p<0.05), while the paternal education level (high school vs. B.Sc.) had no significant impact. However, in a comparison of high school vs. higher education, paternal education had a significant effect on patients' physical activity and well-being (p<0.05). We conclude that parental levels of education play a significant role in various aspects of the lives and GH of children with epilepsy. Maternal education, in particular, plays a significant role in GH and the overall QOL of male patients. Further research is suggested to identify the socioeconomic and cultural factors responsible for these findings.

Factors associated with quality of life in active childhood epilepsy: A population-based study

BackgroundImproving health-related quality of life (HRQOL), rather than just reducing seizures, should be the principal goal in comprehensive management of childhood epilepsy. There is a lack of population-based data on predictors of HRQOL in childhood epilepsy. MethodsThe Children with Epilepsy in Sussex Schools (CHESS) study is a prospective, population-based study involving school-aged children (5–15 years) with active epilepsy (on one or more AED and/or had a seizure in the last year) in a defined geographical area in the UK. Eighty-five of 115 (74% of eligible population) children underwent comprehensive psychological assessment including measures of cognition, behaviour, and motor functioning. Parents of the children completed the Quality of Life in Childhood Epilepsy (QOLCE).Clinical data on eligible children was extracted using a standardised pro forma. Linear regression analysis was undertaken to identify factors significantly associated with total Quality of Life in this population. ResultsFactors independently significantly associated (p < .05) with total QOLCE scores were seizures before 24 months, cognitive impairment (IQ < 85), anxiety, and parent reported school attendance difficulty. These factors were also significantly associated with total QOLCE when children with IQ < 50 were excluded from analysis. ConclusionsThe majority of factors associated with parent reported HRQOL in active childhood epilepsy are related to neurobehavioural and/or psychosocial aspects of the condition.

Convulsive status epilepticus and health-related quality of life in children with epilepsy.

The objective of this study was to examine the association between convulsive status epilepticus (CSE) and health-related quality of life (HRQL) during a 24-month follow-up in a multisite incident cohort of children with epilepsy. Data were collected in the Health-Related Quality of Life Study in Children with Epilepsy Study from 374 families of children with newly diagnosed epilepsy. The Quality of Life in Childhood Epilepsy (QOLCE) Questionnaire was used to evaluate parent-reported child HRQL. Hierarchical linear regression was used to examine the relationship between CSE and HRQL at 24 months postepilepsy. A total of 359 families completed the 24-month assessment. Twenty-two children (6.1%) had experienced CSE during the follow-up. Children with and without CSE were similar, except a larger proportion of children with CSE had partial seizures (p < 0.001). Controlling for clinical, demographic, and family characteristics, CSE was significantly associated with poorer HRQL (β = -4.65, p = 0.031). The final model explained 47% of the variance in QOLCE scores. The findings suggested that not only do children with CSE have significantly poorer HRQL compared with their non-CSE counterparts, but that this factor is independent of the effects of demographic and clinical features known to affect HRQL.

Developing the Pediatric Refractory Epilepsy Questionnaire: A pilot study

PurposeUp to 14% of children with epilepsy continue to experience seizures despite having appropriate medical therapy and develop medically refractory epilepsy (MRE) [8,9]. Assessing clinical outcomes and therapeutic efficacy in children with MRE undergoing palliative epilepsy surgery has been challenging because of the lack of a quantitative instrument capable of estimating the clinical status of these patients. The ideal instrument would at once consider seizure control, neurodevelopment, caregiver burden, and quality of life. The purpose of this study was to develop and pilot the Pediatric Refractory Epilepsy Questionnaire (PREQ), a quantitative instrument to assess the severity and individual burden of epilepsy in children with MRE undergoing palliative epilepsy treatments. MethodsThe caregivers of 25 patients with MRE completed the PREQ and the Quality of Life in Childhood Epilepsy (QOLCE) measure and participated in a semistructured interview. Medical records of the patients were reviewed, an Early Childhood Epilepsy Severity Scale (E-CHESS) score was calculated, and a Global Assessment of Severity of Epilepsy (GASE) score was obtained for each patient. Key findingsThe initial PREQ was modified based on the analysis of responses, association with previously validated scales, comments from caregivers, and expertise of the PREQ panelists. Pediatric Refractory Epilepsy Questionnaire subscale scores were calculated based on clinical paradigm and compared with independent measures of seizure severity and quality of life. Significant correlations were observed between the seizure severity subscale and the GASE score (r=0.55) and between the mood subscale and the well-being score (r=0.61) on the QOLCE. Significant correlations were also observed between the caregiver rating of seizure severity and the GASE score (r=0.53), the social activity score (r=0.57), and the behavior score (r=0.43) on the QOLCE. Correlations between the caregiver rating of quality of life and the quality of life score (r=0.58) and the number of AEDs used (r=0.45) were also significant. SignificanceThis pilot study is an initial, critical step in the development of the PREQ. The significant correlations between the PREQ subscales and the external epilepsy severity and quality of life measures lend preliminary support to our hypothesis that the PREQ is assessing the severity of epilepsy along with other important domains, such as mood, neurodevelopment, and quality of life. A larger prospective study of this modified PREQ is currently underway to further develop the PREQ.

Assessment of parent reported quality of life in children with epilepsy from Northern India: A cross-sectional study.

Objective:The objective of the following study is to assess parent reported quality of life (QOL) in children with epilepsy and to assess the demographic and clinical factors, which influence the QOL in children with epilepsy.Study Participants:We consecutively enrolled 40 children aged from 2 years to 14 years with active epilepsy who had undergone a comprehensive evaluation for epilepsy.Materials and Methods:Parents were enquired on baseline demographic variables including age, gender, socio-economic status and parental education. Clinical details of epilepsy including the type of epilepsy, seizure frequency were assessed. QOL was evaluated with the parent reported quality of life in childhood epilepsy (QOLCE) questionnaire.Results:A total of 40 children were enrolled of which 55% (22/40) were males and the mean (standard deviation [SD]) age of enrolled children was 10.6 (2.7) years. The majority came from a rural background (80% [32/40]), were from lower (15 [37.5%]) or middle (23 [57.5%]) socio-economic status, with almost half (22 [55%]) of mothers being educated until high school. The overall mean (SD) QOL score was 66.7 (4.83). Lowest mean (SD) scores were observed in self-esteem (45.2 [7.3]) subscale and subscales with higher QOL scores included control/helplessness (82.1 [8.51]), anxiety (81.6 [12.55]) and social stigma (95.0 [11.6]). Parental education, socio-economic status (P = 0.96), frequency of seizure (P = 0.34) or type of epilepsy (P = 0.92) did not significantly affect the overall QOL among children with epilepsy.Conclusion:Our study concluded that overall QOL was compromised in Indian children with epilepsy. Demographic factors like parental education, socio-economic status and clinical factors like frequency of seizure or type of seizure did not significantly affect the QOL of epileptic children.

Health-related quality of life before and after pediatric epilepsy surgery: The influence of seizure outcome on changes in physical functioning and social functioning

Health-related quality of life (HRQOL) is an important outcome in pediatric epilepsy surgery, but there are few studies that utilize presurgical ratings to assess the effect of surgery on HRQOL. We collected parental ratings on the Quality of Life in Childhood Epilepsy (QOLCE) questionnaire for 28 children who participated in neuropsychological assessment before and after epilepsy surgery. Our results revealed significant improvements in overall HRQOL after surgery, especially in physical and social activities. These changes were apparent despite generally unchanged intellectual and psychological functioning. Children with better seizure outcome had more improvement in HRQOL; however, improvements were not statistically different among children with Engel class I, II, and III outcomes. Our results suggest that children can experience significant improvements in HRQOL following epilepsy surgery even when neuropsychological functioning remains unchanged. Moreover, improvements in HRQOL appear evident in children who experience any worthwhile improvement in seizure control (Engel class III or better).

Epilepsy Surgery in a Pediatric Population: A Retrospective Study of 129 Children from a Tertiary Care Hospital in a Developing Country along with Assessment of Quality of Life

Purpose: To assess the outcome of a pediatric population operated for drug-resistant epilepsy from a large tertiary care center in India. Methods: Retrospectively: quality of life (QOL); prospectively: preoperative assessment included interictal EEG, MRI (as per epilepsy protocol), video-EEG. Ictal SPECT (with subtraction) and PET were performed when required. QOL scores were assessed using the HASS or SSQ for seizure severity, Quality of Life in Childhood Epilepsy (QOLCE) for QOL, and Child Behavior Check List (CBCL) for behavior. Results: 142 were operated from January 2000 to June 2011 by the senior author. 118 patients with at least 1 year of follow-up were included in the study. Mean age at surgery was 9.8 ± 4.3 years. In addition, 40 patients underwent QOL assessment prospectively both before and after surgery. Mean duration of epilepsy was 5.3 ± 3.3 years. A class I outcome (Engel’s) was seen in 79.5% patients, class II in 8.6%, class III in 10.7%, and class IV in 1 patient. As per surgical procedures, class I outcome in patients who underwent temporal resection, hemispherotomy and extratemporal resection was 76, 87 and 72%, respectively. QOL scores correlated with duration of seizures, epileptic encephalopathy and outcome of surgery, but not with side of surgery, age and sex. Conclusions: This study, the largest reported from India, has demonstrated satisfactory results for epilepsy surgery in children.