Screening and treatment of anxiety symptoms within an interdisciplinary comprehensive epilepsy center.

Youth with epilepsy (YWE) are at elevated risk for anxiety, yet anxiety is often undetected and understudied in this population. Most research on anxiety in YWE is based on parent proxy-report and broad-band measures with limited sensitivity. The aim of the current study was to: 1) examine rates of anxiety symptoms in YWE using a diagnosis-specific, self-report measure of anxiety symptoms, 2) assess differences in anxiety symptoms by sociodemographic and medical variables, and 3) evaluate changes in anxiety symptoms following a brief behavioral health intervention delivered within an interdisciplinary epilepsy clinic visit. As part of routine clinical care, 317 YWE [Mage=13.4+2.5 years (range 7-19 years); 54% female; 84% White: Non-Hispanic] completed the Multidimensional Anxiety Scale for Children, self-report (MASC-10), with a subset completing the MASC-10 at a second timepoint (n=139). A retrospective chart review was completed and sociodemographic, medical variables and behavioral health interventions were collected. Thirty percent of YWE endorsed elevated anxiety symptoms, with higher rates in those who were younger. YWE who received a behavioral health intervention for anxiety (n=21) demonstrated greater decreases in anxiety symptoms from Time 1 to Time 2 compared to those who did not receive a behavioral intervention (n=108). The integration of psychologists into pediatric epilepsy clinics may have allowed for early identification of anxiety symptoms, as well behavioral interventions to address these symptoms, which has the potential to decrease the need for more intensive services.

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

PURPOSE: Epilepsy-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. METHOD: Youth 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). RESULTS: Hierarchical 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. CONCLUSIONS: Given 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.

Behavioral health screening in pediatric epilepsy: Which measures commonly used in the United States are 'good enough'?

PURPOSE: To improve evidence-based implementation of behavioral health screening measures in pediatric epilepsy care, guidance is needed in the selection and interpretation of evidence-based screening measures. Therefore, the goals of this project were to (1) evaluate the clinical utility and psychometric properties of screening instruments frequently used in the United States (US) for anxiety, depression, and behavior problems in youth with epilepsy (YWE), and (2) provide guidance around selection and interpretation of these behavioral health screening measures. METHOD: The critique was conducted in three phases: (1) identification of articles based on search criteria; (2) full review of articles for eligibility assessment; (3) evaluation of screening measures and organization into Tiers. Nine behavioral health measures frequently used to screen for anxiety, depression, and disruptive behaviors in the US were selected for evaluation. PubMed, CINAHL, Medline, and APA databases were searched using the following search terms: [target area] + [screening measure] + epilepsy + children [youth], [adolescents]. Inclusion/exclusion criteria for articles were as follows: (1) focused on YWE, (2) written in English, and (3) conducted in the US. Once articles were selected, Hunsley and Mash's criteria were used to evaluate and categorize the screening measures' psychometric properties, which have clear relevance to clinical practice. Measures were also classified into three tiers by the level of validation according to established evidence-based criteria. RESULTS: Forty-one unique papers were identified through the literature search and assessed as eligible. Evaluation of screening measures revealed only two psychometrically sound measures that met criteria for Tier 1, the NDDI-E-Y and the Pediatric NeuroQoL-Depression, both depression screening measures. Several additional depression screening measures met criteria for Tier 2 (CDI-2, BASC-2-Depression Scale, and CBCL Withdrawn/Depressed Scale). Anxiety screening measures have not been validated in pediatric epilepsy and thus only met the criteria for Tier 2 (BASC-2 Anxiety Scale, CBCL DSM-IV Oriented Anxiety Problems Scale, MASC). Similarly for disruptive behaviors, two measures met Tier 2 criteria (BASC-2 Externalizing Problems Index, CBCL Externalizing Problems Index). CONCLUSION: Strides have been made in the validation of behavioral health screening measures for YWE; however, continued research in this area is necessary to validate existing psychometrically sound measures and to develop and evaluate epilepsy-specific measures in the pediatric epilepsy population.