PedsQL™ Cognitive Functioning Scale in youth with epilepsy: Reliability and validity.

OBJECTIVE: The objective of the study was to report on the internal consistency reliability and discriminant, concurrent and construct validity of the Pediatric Quality of Life Inventory™ (PedsQL™) Cognitive Functioning Scale as a brief generic cognitive functioning measure in youth with epilepsy. METHODS: The 6-item PedsQL™ Cognitive Functioning Scale and 23-item PedsQL™ 4.0 Generic Core Scales were completed by 221 pediatric patients ages 5-18 years with epilepsy and 336 parents of patients ages 2-18 years in a national field test study for the PedsQL™ Epilepsy Module. Parents also completed the 86-item Behavior Rating Inventory of Executive Function (BRIEF), a widely validated measure of executive functioning. RESULTS: The PedsQL™ Cognitive Functioning Scale evidenced excellent reliability (patient self-report α = 0.88; parent proxy-report α = 0.96), distinguished between youth with epilepsy and an age, gender, and race/ethnicity-matched healthy sample supporting discriminant validity with large effect sizes (~20-30 point score differences, P < 0.001), and demonstrated concurrent and construct validity, respectively, through large effect size intercorrelations with the BRIEF (Behavioral Regulation Index, Metacognition Index, Global Executive Composite Summary Scores rs = 0.43-0.67, P < 0.001) and the PedsQL™ Generic Core Scales (Total Scale Scores rs = 0.67-0.74, P < 0.001). Minimal clinically important difference (MCID) scores ranged from 5.92 to 8.80. CONCLUSIONS: The PedsQL™ Cognitive Functioning Scale demonstrated excellent internal consistency reliability, discriminant, concurrent, and construct validity in youth with epilepsy and may be suitable as a brief generic patient-reported outcome (PRO) measure for clinical research, clinical trials, and routine clinical practice in pediatric epilepsy.

Current behavioral health and cognitive screening practices in pediatric epilepsy.

PURPOSE: Initiatives such as the Epilepsy Learning Healthcare System continue to advocate for standardized care and shared outcome data. Therefore, the current project aim was to gather information from epilepsy healthcare professionals, behavioral health professionals in particular, regarding their behavioral health and cognitive screening practices in pediatric patients with epilepsy. Information obtained will be used to assist in the development of new educational programs and platforms in the American Epilepsy Society (AES) and to inform the development of guidelines for behavioral healthcare of patients with pediatric epilepsy. SURVEY INFORMATION: Twenty-five AES members representing 25 unique epilepsy programs across the United States participated in the survey. Findings are described in terms of three focus areas: (1) Systems, (2) Assessment, and (3) Intervention. Over 80% of respondents surveyed reported that they do conduct formal screenings, most commonly to determine if further evaluation is indicated (81%), inform treatment decisions (57.1%), and for developmental surveillance (33.3%). Assessment methods were fairly evenly split between nonstandardized informal questions (50%) and evidence-based broadband measures, with the Behavior Assessment System for Children (BASC), 2nd or 3rd Editions (40%) most commonly used. If behavioral health concerns are identified, referrals are often made for psychotherapy (48% in-house; 80% community-based), psychiatry (68% in-house; 48% community-based), and cognitive testing (88% neuropsychological testing; 36% for psychoeducational testing). Thirty-two percent refer for psychotropic medication management. CONCLUSION: According to this survey, a number of epilepsy centers and clinics incorporate behavioral health screening; however, there is significant variability in assessments/measures used, who is administering them, and their purpose in the trajectory of treatment. These findings emphasize the need for standardization across centers in order to most effectively provide comprehensive care for youth with epilepsy.

Vulnerabilities to antiepileptic drug (AED) side effects in youth with epilepsy.

OBJECTIVE: The objective of the study was to investigate the relationship between sociodemographic, seizure-related, behavioral health, and antiepileptic drug (AED) adverse effect variables. The aim of this study was to examine whether there were significant differences on AED adverse effects between youth with normative and subclinical/clinical depressive and/or anxiety symptoms. METHODS: As part of a larger multisite validation study, 231 youth age 5 to 18 years diagnosed with epilepsy and their caregivers were recruited to participate for the current study. Youth ages 8 and older and caregivers of all youth completed the Behavior Assessment System for Children-2 (BASC-2). Caregivers also completed the Pediatric Epilepsy Side Effects Questionnaire (PESQ) and a Background Questionnaire. Medical chart review provided information regarding epilepsy diagnosis and treatment. RESULTS: No differences were observed in the mean scores on AED adverse effects between the group with subclinical/clinical BASC-2 Depressive symptoms and those with average/low depressive symptoms. In contrast, the proportion of youth with subclinical/clinical versus average/low depressive symptoms via caregiver report was significantly different for the cognitive, behavioral, general neurological, and total scale of the PESQ. There was also a larger proportion of youth with self-reported subclinical/clinical depressive symptoms who experienced general neurological adverse effects compared with youth with average/low depressive symptoms who experienced general neurological adverse effects. Findings were consistent for anxiety symptoms. SIGNIFICANCE: Identifying potentially modifiable behavioral health symptoms that exacerbate the expression of AED adverse effects could provide alternative solutions for improved AED tolerability to achieve optimum treatment outcomes.

Validation of the PedsQL Epilepsy Module: A pediatric epilepsy-specific health-related quality of life measure.

OBJECTIVE: To validate a brief and reliable epilepsy-specific, health-related quality of life (HRQOL) measure in children with various seizure types, treatments, and demographic characteristics. METHODS: This national validation study was conducted across five epilepsy centers in the United States. Youth 5-18 years and caregivers of youth 2-18 years diagnosed with epilepsy completed the PedsQL Epilepsy Module and additional questionnaires to establish reliability and validity of the epilepsy-specific HRQOL instrument. Demographic and medical data were collected through chart reviews. Factor analysis was conducted, and internal consistency (Cronbach's alphas), test-retest reliability, and construct validity were assessed. RESULTS: Questionnaires were analyzed from 430 children with epilepsy (Mage = 9.9 years; range 2-18 years; 46% female; 62% white: non-Hispanic; 76% monotherapy, 54% active seizures) and their caregivers. The final PedsQL Epilepsy Module is a 29-item measure with five subscales (i.e., Impact, Cognitive, Sleep, Executive Functioning, and Mood/Behavior) with parallel child and caregiver reports. Internal consistency coefficients ranged from 0.70-0.94. Construct validity and convergence was demonstrated in several ways, including strong relationships with seizure outcomes, antiepileptic drug (AED) side effects, and well-established measures of executive, cognitive, and emotional/behavioral functioning. SIGNIFICANCE: The PedsQL Epilepsy Module is a reliable measure of HRQOL with strong evidence of its validity across the epilepsy spectrum in both clinical and research settings.