Youth With Epilepsy Research Articles

Key predictors of epilepsy-specific health-related quality of life (HRQOL) in youth with epilepsy

PurposeEpilepsy-specific health-related quality of life (HRQOL) is an important outcome in youth with epilepsy (YWE). The PedsQL™ Epilepsy Module is the only caregiver-proxy and youth self-report epilepsy-specific HRQOL measure that can be used with youth 2–25 years. Multiple factors affect HRQOL, including epilepsy-specific characteristics, comorbid mental and behavioral health concerns, as well as sociodemographic factors. However, we have not yet examined the cumulative impact of these factors on epilepsy-specific HRQOL in YWE using the PedsQL™ Epilepsy module. MethodYouth with epilepsy (n = 281) and their caregivers completed questionnaires focused on sociodemographic factors (e.g., youth biological sex and age), mood/anxiety and behavior symptoms (i.e., Behavioral Assessment Scale for Children – Second Edition; BASC-2, Parent Rating Scale), epilepsy characteristics [e.g., seizure frequency, number of anti-seizure medications (ASMs), ASM side effects, and years since diagnosis], and the PedsQL™ Epilepsy module (subscales: Impact, Cognitive Functioning, Executive Functioning, Sleep, and Mood/Behavior). ResultsHierarchical linear regressions were conducted to examine caregiver-proxy and youth self-reported factors that affect epilepsy-specific HRQOL. Results indicate the strongest key shared predictors of HRQOL in YWE, for both youth and caregiver informants, were mental and behavioral health symptoms. For instance, caregiver-proxy report of YWE HRQOL indicated BASC-2 Externalizing (p < 0.05), Behavioral Symptoms (p < 0.01), and Adaptive Skills (p < 0.001) explained 58 % of the variance in youth Cognitive Functioning HRQOL, while youth self-report of HRQOL indicated that BASC-2 Externalizing (p < 0.01), Behavioral Symptoms (p < 0.05), and Adaptive Skills (p < 0.001) contributed only 36 % of the variance in Cognitive Functioning HRQOL above and beyond the variance explained by sociodemographic and epilepsy-specific characteristics. Similar results were noted for Executive Functioning HRQOL domain, wherein caregiver-proxy report of YWE HRQOL indicated BASC-2 Internalizing (p < 0.01), Behavioral Symptoms (p < 0.001) and Adaptive Skills (p < 0.001) explained 65 % of variance in Executive Functioning, whereas youth self-report of Executive Functioning HRQOL indicated that caregiver-proxy BASC-2 Internalizing (p < 0.001) and Behavioral Symptoms (p < 0.01) explained 34 % of the variance in Executive Functioning HRQOL, above and beyond the variance explained by sociodemographic and epilepsy-specific characteristics. Unique mental and behavioral health predictors of YWE HRQOL were also found for both caregiver-proxy and youth self-report. ConclusionsGiven the integral role of mental and behavioral health symptoms in epilepsy-specific HRQOL, it is critical to address mental and behavioral health symptoms preventatively and proactively to provide YWE with the most optimal health plan, including good seizure control, minimal ASM side effects, and the best possible HRQOL.

Self-Disclosure Patterns Among Children and Youth with Epilepsy: Impact of Perceived-Stigma.

This review aimed to synthesize the minimal existing literature on the impact of perceived stigma on self-disclosure patterns among children and youth with epilepsy (YWE). Initial literature searches were conducted in PsycInfo, Scopus, Web of Science, and PubMed using search terms focused on epilepsy, pediatrics, disclosure, and/or stigma. Articles were included if they were original human research articles published in peer-reviewed journals that were accessible in English through Cincinnati Children's Hospital Medical Center Pratt Library and fit study aims. Thirteen articles, which primarily used qualitative self-report methodologies, fit the study's inclusion criteria. YWE report greater perceived stigma and lower illness disclosure compared to youth with other chronic health conditions. Across studies, perceived stigma was consistently identified as a barrier to YWE disclosing their epilepsy diagnosis. Consequences of perceived stigma included lower self-esteem, poorer perceived competency, lack of self-confidence, social withdrawal, and lower quality of life. YWE's reluctance to disclose epilepsy was associated with worry about differential treatment, negative impact on close relationships, negative impact on others' perceptions, and negative self-perceptions. While WHO and ILAE have identified stigma as contributing to higher disease burden in people with epilepsy and have highlighted the importance of prioritizing social policy focused on decreasing epilepsy-related stigma, progress has been incremental and much work remains. Future research is needed to understand socio-cultural factors perpetuating stigma among YWE in order to further develop, evaluate, and disseminate evidence-based clinical and education programming to combat epilepsy-related stigma.

ADHD and epilepsy-related QoL in youth with epilepsy

ObjectivePediatric epilepsy and attention-deficit/hyperactivity disorder (ADHD) present a cumulative vulnerability to youth, particularly in the domains of executive function (EF) and quality of life (QoL). The aim of this study was to explore the relationships between EF and epilepsy-specific QoL in youth with epilepsy (YWE) who also have ADHD. MethodsYouth with epilepsy aged 5–18 years and caregivers participated in a large multi-site national validation of the PedsQL™ Epilepsy Modules. YWE and their caregivers were asked to complete measures of epilepsy-specific QoL, ADHD symptoms, and EF. Previous ADHD diagnosis was reported by caregivers as well as abstracted from the medical record. ResultsCaregiver and YWE reports of current ADHD symptoms significantly predicted all epilepsy-specific QoL domains. Suboptimal QoL was reported for those YWE whose ADHD symptoms were above the clinical threshold compared to YWE whose ADHD symptoms were within the average range. Results were similar for YWE with a documented ADHD vs no ADHD diagnosis. In addition, poorer metacognition and behavioral regulation EF was associated with lower epilepsy-specific QoL for both YWE with ADHD and without ADHD diagnosis. However, in YWE with ADHD, effect sizes were consistently larger for behavioral regulation compared to metacognition across epilepsy-specific QoL domains, with behavioral regulation accounting for 50% of the variance in each of the EF and mood QoL domains. SignificanceAddressing ADHD symptoms, epilepsy-specific, QoL, and EF as part of routine epilepsy care may promote optimal outcomes for YWE with ADHD as well as relieve burden on the healthcare system.

Systematic Review and Meta-Analysis of Anxiety and Depression in Youth With Epilepsy.

The aim of this systematic review and meta-analysis was to provide an estimate of the prevalence of anxiety and depressive disorders in youth with epilepsy (YWE). It also aimed to calculate the overall magnitude of observed differences in anxiety and depressive symptoms reported by YWE compared with healthy controls and investigate whether any factors moderated anxiety and depression outcomes in YWE. Following prospective registration, electronic databases were searched up until October 2018. Studies were included if they reported on the rate of anxiety or depression in samples of YWE, and/or if they used valid measures of anxious or depressive symptomatology in YWE compared with a healthy control sample. Twenty-three studies met inclusion criteria. The overall pooled prevalence of anxiety disorders in YWE was 18.9% (95% confidence interval [CI] 12.0%-28.5%), and for depression the pooled prevalence was 13.5% (95% CI 8.8%-20.2%). In samples of YWE compared with healthy controls, significantly higher anxiety (d = 0.57, 95% CI 0.32-0.83, p < .000) and depressive (d = 0.42, 95% CI 0.16-0.68, p < .000) symptomatology was reported. YWE report anxiety and depressive disorders and symptoms to a significantly higher degree than youth without epilepsy. There is also evidence that certain anxiety disorders (e.g. generalized anxiety disorder, separation anxiety disorder) are particularly elevated, perhaps reflecting the unique impact of epilepsy on youth psychopathology. Research is needed to understand the risk factors associated with anxiety and depressive disorders in epilepsy, and better understand how these symptoms change across development.

Establishing clinical cutoffs for the PedsQL™ Epilepsy Module

ObjectiveThe purpose of the present study was to establish clinical cutoffs for the PedsQL Epilepsy Module scales by dichotomizing scores into normative or impaired. We predicted that these cutoffs would be useful in identifying children at greater risk for impairments in health-related quality of life (HRQOL) including those who exhibit effects of ongoing seizures, antiepileptic drugs (AEDs), and polytherapy. MethodsTwo hundred and thirty-seven youth (2–18 years old) and their caregivers were recruited from five tertiary care hospitals across the United States. Caregivers and youth (5 years and older) completed the parent- or self-report versions of the PedsQL Epilepsy Module. Caregivers also completed measures of behavior and mood, AED side effects, and executive functioning in children. Clinical cutoffs were calculated in two ways: anchor-based (receiver operating characteristic (ROC) curve) and distribution-based (0.5 standard deviation (SD)). Medical characteristics were abstracted from the medical chart. t-Tests and chi-square tests were used to determine whether children's HRQOL classified as normative or impaired in epilepsy quality of life differed on seizure freedom, AED side effects, and polytherapy. ResultsThe final clinical cutoffs were as follows for each PedsQL Epilepsy Module subscale (caregiver and child): Impact (Parent = 60.7; Child = 64.39), Cognitive (Parent = 38.11; Child = 50.97), Executive Functioning (Parent = 46.65; Child = 57.15), Sleep (Parent = 42.07; Child = 43.90), and Mood/Behavior (Parent = 54.14; Child = 53.30). Youth with more severe AED side effects, ongoing seizures, and/or on polytherapy were more likely to have impaired quality of life across domains. ConclusionClinical cutoffs extend this instrument's utility in surveilling common psychosocial comorbidities, tracking changes in functioning over time, and informing clinical decision-making in youth with epilepsy including recommendations for additional assessment and intervention by a range of health providers serving youth with epilepsy (YWE).

Screening for depression in youth with epilepsy: Psychometric analysis of NDDI-E-Y and NDDI-E in a French population

ObjectivesThe objective of this study was to evaluate the Neurological Disorders Depression Inventory-Epilepsy (NDDI-E) for Youth (NDDI-E-Y) for screening for major depressive disorder (MDD) in French youth with epilepsy (YWE), in order to (1) validate this tool in a separate population; (2) determine whether the 12-item NDDI-E-Y affords advantages over the 6-item adult NDDI-E; (3) measure psychometric performance of each item. MethodsYouth with epilepsy aged 11–17 years completed a 15-item questionnaire to calculate total scores for NDDI-E-Y (12 items) and NDDI-E (6 items). Gold standard for MDD was Children's Depression Inventory (CDI). Receiver operator characteristic (ROC) analyses for total NDDI-E-Y and NDDI-E scores were compared. Psychometric properties of each item were analyzed for: floor/ceiling effect, item-internal consistency, and ROC curve. ResultsNinety-seven YWE were included; 21.6% had MDD (CDI > 15). Correlation was very high between total NDDI-E-Y and NDDI-E scores, and high between NDDI-E-Y and CDI. Cutoff point for the NDDI-E-Y maximizing both sensitivity and specificity was 23 (original study cutoff 32). The ROC analysis of the NDDI-E-Y showed an area under the curve (AUC) 0.967 (95% confidence intervals [CI] 0.909–0.992); (p < 0.0001). Sensitivity, specificity, and positive (PPV) and negative predictive values (NPV) were 100% [83.9; 100], 82.9% [72.5; 90.6], 61.8 [43.6; 77.8], and 100% [94.3; 100], respectively. The NDDI-E-Y was not superior to NDDI-E according to pairwise comparison of ROC (p = 0.07). Psychometric analysis revealed marked differences between items. After eliminating items with poorer performance, a 6-item version of the NDDI-E-Y showed sensitivity, specificity, PPV, and NPV of 100% [85.5; 100], 85.5% [75.6; 92.5], 65.6 [46.8; 81.4], and 100% [94.5; 100], respectively. This was significantly better than the adult NDDI-E (p = 0.03) though not NDDI-E-Y (p = 0.07). SignificanceSignificant difference in cutoff indicates that the NDDI-E-Y cannot yet be recommended for widespread screening of MDD in YWE. Discrepancies in psychometric performance between items suggest that further work is needed to examine both validation of the original 12-item NDDI-E-Y and comparison with a shorter version.

Dissociation and other clinical phenomena in youth with psychogenic non-epileptic seizures (PNES) compared to youth with epilepsy

PurposeTo compare youth with psychogenic non-epileptic seizures (PNES) to youth with epilepsy on demographic and clinical features and the Trauma Symptom Checklist for Children (TSCC). MethodA retrospective study of 31 patients; 15 patients with PNES (11 females) and 16 patients with epilepsy (8 females) collected consecutively between 2014–2018.Demographic and clinical information (age of seizure onset, life adversities, individual/family psychiatric history, etc.) were gathered. Scales from the TSCC (Dissociation, Depression, Anxiety) were analyzed. ResultsEleven of the youth with PNES (YPNES) (73%) were female, mean age was 14.3 ± 1.6 years and years of education were 9 ± 1.9. Eight of the youth with epilepsy (YWE) (50%) were females, mean age was 11.9 ± 2.8 years and years of education were 5.6 ± 2.9. All 15 YPNES and over half of their families had comorbid psychological problems whilst rates of personal and family psychiatric histories were much lower in YWE. Well over half of YPNES reported experiencing life adversities while one fourth of YWE reported these types of experiences. Significant differences were observed between YPNES and YWE on TSCC Overt Dissociation (p < 0.003), Dissociation (p < 0.009), and Depression (p < 0.001) scales, with YWE producing lower scores. When the six target variables were condensed into one principal component, the global TSCC score was lower in the epilepsy group, even after adjusting for potential effects age, seizure frequency and intellectual quotient. ConclusionsThe current study’s results indicate that YPNES present with comparably higher self-reported symptoms of depression and dissociation than YWE.

Skills for Growing Up-Epilepsy: An exploratory mixed methods study into a communication tool to promote autonomy and empowerment of youth with epilepsy

IntroductionThe consequences of having epilepsy seriously hamper the development of autonomy for youth with epilepsy (YWE) and limit their social participation. This study was designed to provide insight into the impact of epilepsy on autonomy and empowerment and to evaluate the use of the Skills for Growing Up (SGU-Epilepsy) communication tool in pediatric epileptic care. MethodsA mixed methods design was used to examine the impact of epilepsy on autonomy and empowerment and to evaluate the feasibility and use of the SGU-Epilepsy. Six focus groups with YWE and their parents were organized (N = 27), and the benefits of the SGU-Epilepsy were evaluated (N = 72). ResultsYouth with epilepsy struggled with social participation. Beliefs of YWE and their parents on managing daily life and taking medication were not always similar. Parents worried about the passive attitude of YWE, but autonomy of YWE seemed to be constrained by parents. The SGU-Epilepsy seemed to be feasible. It facilitated the communication on development and empowerment although it was sometimes confronting for parents. Not all YWE were motivated to use and discuss the tool. In the evaluation, no differences in perceived autonomy and empowerment between YWE who used SGU-Epilepsy and received usual care appeared. ConclusionOn the short-term, a beneficial effect of using the SGU-Epilepsy on autonomy and empowerment for YWE and their parents was not shown. The SGU-Epilepsy seemed to be a feasible instrument, however, to address nonmedical issues during pediatric consultations.

Prediction of specific depressive symptom clusters in youth with epilepsy: The NDDI-E-Y versus Neuro-QOL SF.

Proper assessment and early identification of depressive symptoms are essential to initiate treatment and minimize the risk for poor outcomes in youth with epilepsy (YWE). The current study examined the predictive utility of the Neurological Disorders Depression Inventory-Epilepsy for Youth (NDDI-E-Y) and the Neuro-QOL Depression Short Form (Neuro-QOL SF) in explaining variance in overall depressive symptoms and specific symptom clusters on the gold standard Children's Depression Inventory-2 (CDI-2). Cross-sectional study examining 99 YWE (female 68, mean age 14.7 years) during a routine epilepsy visit, who completed self-report measures of depressive symptoms, including the NDDI-E-Y, CDI-2, and the Neuro-QOL SF. Caregivers completed a measure of seizure severity. All sociodemographic and medical information was evaluated through electronic medical record review. After accounting for seizure and demographic variables, the NDDI-E-Y accounted for 45% of the variance in the CDI-2 Total score and the CDI-2 Ineffectiveness subscale. Furthermore, the NDDI-E-Y predicted CDI-2 Total scores and subscales similarly, with the exception of explaining significantly more variance in the CDI-2 Ineffectiveness subscale compared to the Negative Mood subscale. The NDDI-E-Y explained greater variance compared to Neuro-QOL SF across the Total (48% vs. 37%) and all CDI-2 subscale scores; however, the NDDI-E-Y emerged as a stronger predictor of only CDI-2 Ineffectiveness. Both the NDDI-E-Y and Neuro-QOL SF accounted for the lowest amount of variance in CDI-2 Negative Mood. Sensitivity was poor for the Neuro-QOL SF in predicting high versus low CDI-2 scores. The NDDI-E-Y has strong psychometrics and can be easily integrated into routine epilepsy care for quick, brief screening of depressive symptoms in YWE.

Early sexual debut in Norwegian youth with epilepsy: A population-based study.

In comparison with controls, youth with epilepsy (YWE) have greater psychosocial problems. However, information about their sexual behavior is sparse. We have performed a large, population-based questionnaire study to examine differences in sexual behavior between YWE and controls. A randomly chosen cohort of youth (13-19 years) from Akershus county, Norway (n=19,995) was asked to complete a questionnaire anonymously with questions on epilepsy and sexual activity. The response rate was 85%. Two hundred forty-seven participants reported having or having had epilepsy, i.e., a lifetime epilepsy prevalence of 1.2%. Compared with controls, a higher proportion of YWE reported having had sexual intercourse (43.6% vs. 35.3%, p=0.009). The mean age at sexual debut was significantly lower in YWE than in controls (14.0 years vs. 15.0 years, p<0.001), and this was particularly marked among boys. A higher proportion of YWE reported not having used contraceptives at their last sexual intercourse compared with controls (31.6% vs. 22.3%, p=0.03). Ten percent of YWE, compared with 2% of the controls, reported that they had been forced into their first sexual intercourse. In YWE, some aspects of sexual behavior differ from those of their peers, with earlier sexual debut and less frequent use of contraceptives. More attention should be directed toward this subject, aiming at avoiding unwanted pregnancies and potential emotional traumas in this already vulnerable patient group.

Caregiving in pediatric epilepsy: Results of focus groups and implications for research and practice

The process of caring for youth with epilepsy (YWEs) has been understudied. Previous research has identified that caregivers of YWEs report increased parenting stress, unanticipated caregiving responsibilities, and negative effects on family life. Using the adapted Caregiving Process Model, perceptions of the caregiving process were explored in four focus groups of caregivers of youth with epilepsy diagnosed at <1year, between 1 and 5years, and >5years. Thematic analysis guided the data analysis. The prevalent theme that emerged during the data analysis was navigating the noncontingencies (lack of a perceived relationship between action and outcome, unpredictability). This was supported by the subthemes, namely, blessings and sacrifices, uncertainty today and tomorrow, constant vigilance, and caregiving is more than parenting. The focus groups displayed similarities and differences in caregiving perceptions across the three postdiagnosis time periods, providing support for conceptualization of the caregiving as multifactorial, multidirectional, and fluid process. With this knowledge, epilepsy health-care professionals are encouraged to promote patient and family centeredness, provide information on how to access community resources, and work with caregivers to enhance epilepsy self-management skills.

The relationship of coping behaviors to depressive symptoms in youth with epilepsy: An examination of caregiver and youth proxy report

Study aims were to explore evaluation and comparison of measures of coping and the relationship of epilepsy-specific coping responses to depressive symptoms in youth with epilepsy (YWE). Seventy-six YWE ages 9–17 completed the Children's Depression Inventory (CDI) and the Kidcope. Sixty-six caregivers reported on youth coping (CHIC) and seizure activity. Epilepsy variables were abstracted from electronic medical records. There were no significant correlations between the CHIC coping factors and individual Kidcope scores. Only one CHIC factor, “competence/optimism,” was significantly negatively correlated with CDI. Regression analyses revealed a significant association between CDI and negative coping (Kidcope) after adjusting for sex, number of AEDs, and seizure severity. On the CDI, 27% of YWE endorsed suicidal ideation. Findings provide preliminary support for use of the Kidcope as a measure of negative epilepsy-specific coping. These results imply that youth coping and suicidal ideation are important to assess in relation to depressive symptoms and that youth report of these symptoms is particularly salient to the evaluation of youth functioning.

Self-efficacy for seizure management and youth depressive symptoms: Caregiver and youth perspectives

The aims of this study were to (1) compare caregiver and youth measures of self-efficacy for seizure management (SESM), as well as report of depressive symptoms and suicidal ideation in youth with epilepsy (YWE) and (2) examine the potential relationship between caregiver SESM and caregiver report of depressive symptoms in YWE. Seventy-seven YWE ages 9–17 completed the Children's Depression Inventory (CDI) and the Seizure Self-Efficacy Scale for Children with Epilepsy (SSES-C). Sixty-five caregivers completed the Behavior Assessment System for Children (BASC-II) and the Epilepsy Self-Efficacy Scale (ESES). Results showed no agreement between youth and caregiver self-efficacy scores. However, there was low to modest agreement in published classifications of depressive symptoms between youth and caregiver ratings of depressive symptoms in youth, with caregivers reporting higher levels of symptoms than the youth reported. Twenty-seven percent of YWE endorsed suicidal ideation. When caregiver report of their own self-efficacy towards their child's seizures and their assessment of their child's depressive symptoms were compared, there was a significant inverse relationship. These findings suggest a multi-informant approach to assessment of depressive symptoms in YWE, the importance of including self-efficacy for seizure management in assessment and treatment of YWE, and provide support for transactional patterns of psychosocial adjustment.

Gender differences in risk-taking behaviour in youth with epilepsy: a Norwegian population-based study

It is well known that behavioural problems and psychiatric disorders occur with greater prevalence in children and adolescents with epilepsy. Youth with epilepsy (YWE) may also be more susceptible to risk-taking behaviour, but this has seldom been studied. The aim of this study was to explore risk-taking behaviour in YWE. In this study, 19,995 young people (age range: 13-19 years) participated and completed an extensive questionnaire, including The Strengths and Difficulties Questionnaire self-report. A variable, risk-taking behaviour, was identified, including daily consumption of alcohol, substance abuse or having committed a criminal offence such as being in a fight with a weapon, committing a burglary or using threats to obtain money. Two hundred and forty-seven youths reported currently having, or having had, epilepsy (lifetime prevalence: 1.2%). Of these, 8.3% reported daily alcohol consumption (1.0% in controls; P<0.001), 12.4% had tried illegal substances (5.5% of controls; P<0.001), and 19.7% had committed criminal offences (8.5% in controls; P<0.001). A gender difference was found: girls with epilepsy did not exhibit risk-taking behaviour more frequently than controls, but having epilepsy was a risk factor for such behaviour in boys (OR: 3.2). Boys with epilepsy exhibit risk-taking behaviour more frequently than controls. Other risk factors for this behaviour were living with a single parent, low family income and psychiatric symptoms. This behavioural association should be addressed as it probably contributes to the negative social outcomes that frequently occur in the adult epilepsy population.

Feasibility of a pediatric cognitive-behavioral self-management intervention: Coping Openly and Personally with Epilepsy (COPE)

A pilot study was conducted to examine the feasibility and satisfaction of an integrated cognitive-behavioral and self-management intervention for youth with epilepsy (YWE) and caregivers. The Coping Openly and Personally with Epilepsy (COPE) intervention was based on empirically supported cognitive-behavioral techniques and theory driven self-management content. Content of the intervention consists of epilepsy education, primary and secondary coping skills. Children and adolescents ages 10–15, who had been diagnosed with epilepsy for at least six months (ICD-9345 codes), had at least average intelligence, no history of a serious mental illness, were not currently being treated for major depression, and lived within an 80 mile radius were considered eligible. Nine youth and their caregivers completed the COPE program and provided self-report data on feasibility, accuracy, and satisfaction of the COPE program. Caregivers and youth reported a high level of satisfaction with the COPE program, and findings support the feasibility and accuracy of the intervention content and delivery. Results provide a foundation for future randomized, controlled, clinical trials to examine the effectiveness of the COPE program for youth with epilepsy and their caregivers.

Commentary: Pediatric Epilepsy: A Good Fit for Pediatric Psychologists

While there are an abundance of pediatric neuropsychologists working with youth with epilepsy (YWE), other subspecialty psychologists have played minimal roles in clinical and research endeavors in pediatric epilepsy. Thus, the purpose of this commentary was to describe (a) the needs of YWE due to the intermittent nature of seizures and difficulties with disease management, (b) increased risk for psychosocial comorbidities, (c) limited access to care, and (d) provide recommendations for how pediatric psychologists can become involved in the clinical care and research activities for YWE.