Do distance-delivery group interventions improve depression in people with epilepsy?

About one-third of people with epilepsy experience comorbid depression. The present study examined outcomes of a distance-delivery group intervention program designed to improve emotional well-being. Participants were 55 adults with epilepsy and self-reported depressive symptoms who were randomly assigned to take part in either a mindfulness-based cognitive behavioral therapy (CBT) program (UPLIFT, n = 20), an epilepsy information and self-management program (EpINFO, n = 24) that served as an active control group, or a wait-list control (WLC) group (n = 11). The Quick Inventory of Depressive Symptomatology (QIDS), Neurological Disorders Depression Inventory for Epilepsy (NDDIE), and the psychological health subscale of the World Health Organization Quality of Life (WHOQOL-BREF) scale were used to assess depression and psychological quality of life before and after treatment, and at short-term (six months) and long-term follow-up (one year) upon program completion. From pre- to posttreatment, a main effect of time was found, with participants in both the UPLIFT and EpINFO groups having reported to a similar degree a significant decrease in depressive symptoms and improved psychological health, improvements that were not seen in the WLC group. The time by group interaction effect was not significant. The effects seen at posttreatment in the UPLIFT and EpINFO groups remained at six months and one year after treatment. These data suggest that distance-delivery group intervention programs are effective at improving depression and psychological quality of life, with the EpINFO program offering benefits similar to the UPLIFT program.

Impact of resective epilepsy surgery on health-related quality of life in children with and without low intellectual ability.

OBJECTIVE: The current study examined pre- and postoperative health-related quality of life (HRQL) across children with and without low intellectual ability. We also aimed to clarify the literature on postsurgical change by assessing domain-specific HRQL pre- and postoperatively in children with drug-resistant epilepsy. METHOD: All patients (n=111) underwent resective epilepsy surgery between 1996 and 2016 at the Hospital for Sick Children in Toronto, comparing baseline and 1-year follow-up HRQL with the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-76). At the group-level, postsurgical change in HRQL was examined through linear mixed-effects modeling. Clinically important change in HRQL at the individual level was quantified using a standard error of measurement (SEM)-based criterion, and estimates were stratified by intellectual ability. RESULTS: Children with epilepsy and low intellectual ability had lower overall HRQL compared with those with normal intelligence (b=-10.45, SE=4.89, p=.035). No differences in change in HRQL related to intellectual level were found. In the broader sample, significant postoperative improvements were found for HRQL related to physical activity (b=8.28, SE=1.79, p<.001), social activity (b=15.81, SE=2.76, p<.001), and behavior (b=4.34, SE=1.35, p=.001). Postoperative improvements in physical and social HRQL were associated with better seizure control (p=.011). Conversely, cognitive and emotional domains of HRQL did not improve one year postoperatively, even in the presence of improved seizure control. SIGNIFICANCE: Results suggest that children with low intellectual ability can expect to achieve similar improvements in HRQL after epilepsy surgery compared with those with normal intelligence. Further, while overall HRQL is shown to improve in children following epilepsy surgery, domain-specific change is nuanced and has important implications for health practitioners aiming to monitor treatment progress of patients.

Validating the shortened Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55) in a sample of children with drug-resistant epilepsy.

OBJECTIVE: The aim of this study was to validate the newly developed shortened Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55) in a sample of children with drug-resistant epilepsy. METHODS: Data came from 136 children enrolled in the Impact of Pediatric Epilepsy Surgery on Health-Related Quality of Life Study (PEPSQOL), a multicenter prospective cohort study. Confirmatory factor analysis was used to assess the higher-order factor structure of the QOLCE-55. Convergent and divergent validity was assessed by correlating subscales of the KIDSCREEN-27 with the QOLCE-55. Measurement equivalence of the QOLCE-55 was evaluated using multiple-group confirmatory factor analysis of children with drug-resistant epilepsy from PEPSQOL versus children with new-onset epilepsy from HERQULES (Health-Related Quality of Life in Children with Epilepsy Study). RESULTS: The higher-order factor structure of the QOLCE-55 demonstrated adequate fit: Comparative Fit Index (CFI) = 0.948; Tucker-Lewis Index (TLI) = 0.946; Root Mean Square of Approximation (RMSEA) = 0.060 (90% confidence interval [CI] 0.054-0.065); Weighted Root Mean Square Residuals (WRMR) = 1.247. Higher-order factor loadings were strong, ranging from λ = 0.74 to 0.81. Internal consistency reliability was excellent (α = 0.97, subscales α > 0.82). QOLCE-55 subscales demonstrated moderate to strong correlations with similar subscales of the KIDSCREEN-27 (ρ = 0.43-0.75) and weak to moderate correlations with dissimilar subscales (ρ = 0.25-0.42). The QOLCE-55 demonstrated partial measurement equivalence at the level of strict invariance - χ2 (2,823) = 3,727.9, CFI = 0.961, TLI = 0.962, RMSEA = 0.049 (0.044, 0.053), WRMR = 1.834. SIGNIFICANCE: The findings provide support for the factor structure of the QOLCE-55 and contribute to its robust psychometric profile as a reliable and valid measure. Researchers and health practitioners should consider the QOLCE-55 as a viable option for reducing respondent burden when assessing health-related quality of life in children with epilepsy.

Correlates of health-related quality of life in children with drug resistant epilepsy.

OBJECTIVE: Health-related quality of life (HRQL) is compromised in children with epilepsy. The current study aimed to identify correlates of HRQL in children with drug resistant epilepsy. METHODS: Data came from 115 children enrolled in the Impact of Pediatric Epilepsy Surgery on Health-Related Quality of Life Study (PEPSQOL), a multicenter prospective cohort study. Individual, clinical, and family factors were evaluated. HRQL was measured using the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE), a parent-rated epilepsy-specific instrument, with composite scores ranging from 0 to 100. A series of univariable linear regression analyses were conducted to identify significant associations with HRQL, followed by a multivariable regression analysis. RESULTS: Children had a mean age of 11.85 ± 3.81 years and 65 (56.5%) were male. The mean composite QOLCE score was 60.18 ± 16.69. Child age, sex, age at seizure onset, duration of epilepsy, caregiver age, caregiver education, and income were not significantly associated with HRQL. Univariable regression analyses revealed that a higher number of anti-seizure medications (p = 0.020), lower IQ (p = 0.002), greater seizure frequency (p = 0.048), caregiver unemployment (p = 0.010), higher caregiver depressive and anxiety symptoms (p < 0.001 for both), poorer family adaptation, fewer family resources, and a greater number of family demands (p < 0.001 for all) were associated with lower HRQL. Multivariable regression analysis showed that lower child IQ (ß = 0.20, p = 0.004), fewer family resources (ß = 0.43, p = 0.012), and caregiver unemployment (ß = 6.53, p = 0.018) were associated with diminished HRQL in children. SIGNIFICANCE: The results emphasize the importance of child cognition and family variables in the HRQL of children with drug-resistant epilepsy. The findings speak to the importance of offering comprehensive care to children and their families to address the nonmedical features that impact on HRQL.

Confidence and barriers: Analysis of factors associated with timely routine childhood vaccination in Canada during the COVID-19 pandemic.

Routine childhood vaccination is a crucial component of public health in Canada and worldwide. To facilitate catch-up from the global decline in routine vaccination caused by the COVID-19 pandemic, and toward the ongoing pursuit of coverage goals, vaccination programs must understand barriers to vaccine access imposed or exacerbated by the pandemic. We conducted a regionally representative online survey in January 2023 including 2036 Canadian parents with children under the age of 18. We used the COM-B model of behaviour to examine factors influencing vaccination timeliness during the pandemic. We assessed Capability with measures of vaccine understanding and decision difficulty, and Motivation with a measure of vaccine confidence. Opportunity was assessed through parents' self-reported experience with barriers to vaccination. Twenty-four percent of surveyed parents reported having missed or delayed one of their children's scheduled routine vaccinations since the beginning of the pandemic, though most parents reported having either caught up or the intention to catch up soon. In the absence of opportunity barriers, motivation was associated with timely vaccination for children aged 0-4 years (aOR = 1.81, 95 % CI: 1.14-2.84). However, experience with one or more opportunity barriers, particularly clinic closures and difficulties getting an appointment, eliminated this relationship, suggesting perennial and new pandemic-associated barriers are a critical challenge to vaccine coverage goals in Canada.

Quality of life of children and families.

Quality of life (QOL) is recognized as a key outcome of chronic health conditions and is increasingly used and recommended for clinical care and clinical trials. Neurocognitive developmental disorders and disabilities (NDD) are characterized by impairments or comorbidities in multiple areas of function, and, unsurprisingly, youth with NDD and their families have poorer QOL relative to their peers. The impact of NDD goes beyond the characteristic symptoms of the illness, and youth with NDD face numerous comorbidities and psychosocial problems that may have a large impact on QOL. In this chapter, first, we discuss the varying approaches and methodological considerations associated with the measurement of QOL and the implications of using "generic," "disease-specific," and proxy-reported measures of QOL. Second, we review the literature evaluating the QOL of youth with various NDD relative to healthy controls and factors associated with outcomes. Last, we conclude with a review of the literature outlining the importance of family environment, the compromised QOL of parents of youth with NDD, and the needs of parents. Evaluation of QOL is an important and recommended component of comprehensive care and clinical trials.

Single-item measure for assessing quality of life in children with drug-resistant epilepsy.

Objective: The current study investigated the psychometric properties of a single-item quality of life (QOL) measure, the Global Quality of Life in Childhood Epilepsy question (G-QOLCE), in children with drug-resistant epilepsy. Method: Data came from the Impact of Pediatric Epilepsy Surgery on Health-Related Quality of Life Study (PESQOL), a multicenter prospective cohort study (n = 118) with observations collected at baseline and at 6 months of follow-up on children aged 4-18 years. QOL was measured with the QOLCE-76 and KIDSCREEN-27. The G-QOLCE was an overall QOL question derived from the QOLCE-76. Construct validity and reliability were assessed with Spearman's correlation and intraclass correlation coefficient (ICC). Responsiveness was examined through distribution-based and anchor-based methods. Results: The G-QOLCE showed moderate (r ≥ 0.30) to strong (r ≥ 0.50) correlations with composite scores, and most subscales of the QOLCE-76 and KIDSCREEN-27 at baseline and 6-month follow-up. The G-QOLCE had moderate test-retest reliability (ICC range: 0.49-0.72) and was able to detect clinically important change in patients' QOL (standardized response mean: 0.38; probability of change: 0.65; Guyatt's responsiveness statistics: 0.62 and 0.78). Caregiver anxiety and family functioning contributed most strongly to G-QOLCE scores over time. Significance: Results offer promising preliminary evidence regarding the validity, reliability, and responsiveness of the proposed single-item QOL measure. The G-QOLCE is a potentially useful tool that can be feasibly administered in a busy clinical setting to evaluate clinical status and impact of treatment outcomes in pediatric epilepsy.