Search

Objective: (1) Examine 24-hour movement guideline adherence among young people with active and inactive epilepsy compared to population norms. (2) Investigate associations between 24-hour movement guideline adherence and mental health disorders among these subpopulations., Methods: Cross-sectional data from the 2016 to 2019 cycles of the National Survey of Children's Health were used. Parental/caregiver reports of movement behaviors (physical activity, screen time, sleep, and sport participation) were used to determine adherence to the 24-hour movement guidelines and associations with mental health disorders for young people with active (n = 663) and inactive epilepsy (n = 526) as well as population norms (n = 49,067) between 6 and 17 years old. Multivariate logistic regression analyses were conducted., Results: Young people with active epilepsy were less likely to meet the 24-hour movement guidelines than population norms, largely driven by below average levels of physical activity guideline adherence. Sport participation was lower among both young people with active and inactive epilepsy; seizure severity and health-related limitations played an influential role. Beneficial associations were generally observed between 24-hour movement guideline adherence and mental health disorders, although for young people with active and inactive epilepsy, there was considerable variability among these relationships., Conclusions: Further dissemination of the International League Against Epilepsy's Task Force on Sports and Epilepsy report can help improve promotion of physical activity and sport participation among young people with active and inactive epilepsy. The relationship between 24-hour movement guideline adherence and mental health disorders is complex among young people with epilepsy and longitudinal research is needed to determine causal links., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2021 Elsevier Inc. All rights reserved.)

Purpose: Qualitative research studies deepen our understanding of growing up with epilepsy but are limited to the singular perspective of children or their parents at one point in childhood. A more complete view requires multiple perspectives and narrative accounts that represent development from early childhood to young adulthood. Thematic study of life narratives of 7 young people and at least one person within their families were interviewed separately (15 participants) for two interviews each (30 interviews). The objective was to obtain narratives of the life experiences, the attributions of those experiences, and crucial periods relating to quality of life (QOL) with no apriori assumptions that their lives were shaped by epilepsy. Themes were formed inductively from subthemes and codes were created based on the constant comparative method by two interviewers who iteratively co-coded the data., Results: Themes emerging from the data: "Story of My Health," "Growing by Doing," "To Adapt or Not to Adapt," "Supports and Challenges," "Parent World," and "Looking in and Out, Forward and Back", often included components of seizure and epilepsy experiences but also mirrored life challenges of growing up in general. The only exclusively epilepsy-specific theme: "To Adapt or Not to Adapt", was about the challenges and solutions for dealing with the uncertainty caused by seizures and potential isolation that results from others' reactions., Conclusions: There were a range of experiences related to QOL described by participants growing up with epilepsy. The 'ingredients' of a good life (e.g., social and self-acceptance) were consistent with QOL research for general populations, although these were often expressed as more difficult to attain when growing up with epilepsy., Competing Interests: Declaration of interests The authors have no conflicts of interest to declare., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Purpose: This study examined whether increasing physical activity (PA) through 6 months of behavioral counseling positively influenced depressive symptoms and quality of life (QoL) over 12 months among children with epilepsy (CWE)., Methods: A longitudinal multisite randomized controlled trial (RCT) was conducted with 8-14-year-old children with active epilepsy. Participants wore a pedometer to track daily PA and completed 3 measures at 4 time points to examine depressive symptoms and QoL. Stratified by site and activity level, participants were randomized to an intervention or control group. The 6-month intervention included 11 behavioral counseling sessions targeting self-regulation of PA. To assess the associations among PA, depression scores, and QoL, primary analysis involved mixed-effects models., Results: We recruited 122 CWE, of whom 115 were randomized (M age  = 11 ± 2; 50% female) and included in the analysis. The intervention did not increase PA in the treatment compared with the control group. No differences were found between groups over time during the subsequent 6 months, where PA decreased among all participants. Results did not show differences between the groups and over time for measures of depressive symptoms and QoL., Significance: The intervention did not improve or sustain PA levels over 12 months. Both groups demonstrated declines in PA over one year, but there were no changes in depression scores or QoL. As most participants were already nearly reaching the Canadian average of step counts of children their age, with a baseline daily step count of over 9000, there may be a challenge for further increasing PA over a longer period., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Purpose: We aimed to explore (i) the impact that a motivated walking program had on youth with epilepsy and (ii) the facilitators and barriers to implementing and sustaining the program., Methods: Data were gathered using semi-structured interviews with the intervention group of a randomized controlled trial to study the effect of enhanced physical activity on youth with epilepsy. Participants had active epilepsy and were 8-14 years at recruitment. All wore an activity tracker for a year and received coaching via phone calls during the first six months to encourage reaching a step goal, which they then attempted to maintain independently for the following six months. Nine participants and one parent per child were separately interviewed at six months. Eleven participants including the original nine, and one parent per youth, were interviewed at twelve months. Data collection and analysis used a phenomenological research framework and coded the data according to the International Classification of Functioning, Disability and Health (the ICF). This was done in order to capture all relevant impacts of the intervention., Results: Physical activity was associated with benefits in all components of the ICF. Changes in personal factors such as improved attitude, confidence, and insight into activity were emphasized. Parents also experienced personal benefits as a result of their child engaging in the program., Conclusions: Physical activity had positive effects in many aspects of the lives of the participants and their parents. The ICF was a relatively useful and effective system for coding qualitative research. These findings should assist in development of future exercise programs., (Copyright © 2018 Elsevier Inc. All rights reserved.)

In the 21st century, clinicians are expected to listen to, and understand their patients' views about, their conditions and the effects that these conditions have on their functioning, values, life goals, and welfare. The goals of this review are as follows: (i) to inform, update, and guide clinicians caring for children with epilepsy about developments in the content and new methods of research on patient-reported outcomes, quality of life, and functioning; and (ii) to discuss the value of using these concepts to explore the impact of diverse interventions that are implemented in daily practice. Drawing on the literature and our program of research over the past two decades, we focus on our current understanding of a variety of health concepts and recently acquired knowledge about their significance for the lives of patients and their families. We discuss the advantages of measuring patient-reported outcomes that tell us what is important to patients. We advise on what characteristics to look for when choosing a patient-reported measure, and the relevance of these considerations. In addition, we address gaps in research knowledge and the causes of confusion that have limited their use in our daily clinical practice., (Copyright © 2018 Elsevier Inc. All rights reserved.)

Introduction: Participation in extracurricular activities creates opportunities for children to foster friendships, promote a sense of belonging, and improve physical and mental well-being. The objective of this study was to determine the relationship(s) of personal factors, seizure variables, and social supports with extracurricular participation in children with epilepsy (CWE)., Methods: Baseline analysis of the QUALITÉ longitudinal study cohort of children aged 8-14 years (N=426) was conducted. Variables hypothesized to be related to the participation of CWE were classified using the International Classification of Functioning, Disability and Health according to body functions (presence of generalized tonic-clonic seizures in the past month, on/off AEDs, and seizure severity), environmental factors (perceived social support from parents and friends), and personal factors (sex, age, family structure, and family income). Analysis of variables related to extracurricular participation was conducted with regression modeling., Results: Personal factors of age, gender, and family structure as well as body function variables of generalized tonic-clonic seizures and seizure severity were found to be the most important to extracurricular participation based on how frequently they were included in the final models (16/16 and 13/16 times, respectively). When parental support was found to be related to participation, the association was negative in 6 out of 16 models., Discussion: The personal factors that are related to extracurricular participation among children with epilepsy mirror samples based on the general population, although seizures also play an important role. The relationship between perceived parental support and actual participation levels warrants further exploration., (Copyright © 2015 Elsevier Inc. All rights reserved.)

Our objective was to compare the quality of life (QoL) of children with epilepsy to that of typical children and children with cerebral palsy (CP). We measured self- and proxy-reported QoL of children with epilepsy and contrasted that with data for typical children (European KIDSCREEN project) and children with CP (SPARCLE study). Children ages 8-12 years with epilepsy were recruited from six Canadian sites. Same-aged children with CP and children in the general population aged 8-11 years came from several European countries. All participants completed the KIDSCREEN-52 questionnaire. Our results showed no clinically important differences (>0.5 SD) between self-reported QoL in 345 children with epilepsy compared with 489 children with CP or 5950 children in the general population. However, parents reported clinically important differences between the epilepsy and the other groups in five KIDSCREEN-52 domains. Compared with the CP group, parents of children with epilepsy reported better QoL in physical well-being (Cohen d=0.81), social support (d=0.80), and autonomy (d=0.72). Parents reported poorer QoL in the domains of mood and emotions compared with both contrast groups (d=-0.72 and d=-0.53), and in the domain of bullying compared with the CP group (d=-0.51). Families should find comfort in the results, which indicate that children with epilepsy do not perceive any important differences in QoL compared with their typical peers. The comparisons of parental reports detect their group-specific observations and worries that need to be addressed by the health-care providers and may require specifically designed assessment batteries followed by appropriate interventions., (Copyright © 2015 Elsevier Inc. All rights reserved.)

Purpose: Our objective was to understand the range of parental views on whether and how to approach the issue of SUDEP with families, to clarify the optimal timing and formulation of the information, and to learn from parents the optimal counseling strategies in order to minimize the inherent emotional burden., Methods: The principles of fundamental qualitative description were used to guide this descriptive and exploratory study of parental experiences and perceptions. Stratified purposeful sampling included parents (i) who lost children to SUDEP, (ii) of children with moderate to severe epilepsy, (iii) of children with mild epilepsy, and (iv) of children with new-onset epilepsy. Focus group and in-depth one-on-one interviews were conducted. The principles of directed content analysis were used to code and categorize the focus group and interview data. Key concepts from the interview guide were used as the first level of coding categories. Codes were subsequently collapsed into broader categories., Results: There was full agreement, across both genders and regardless of seizure severity, that routine counseling about SUDEP should be provided by pediatric neurologists, during the appointment when the diagnosis of epilepsy is shared with parents, and with opportunities for short-term follow-up and discussions with clinical nurses or social workers. Parents described feeling overwhelmed, worried, and increasingly anxious when the risk of SUDEP was explained to them. Parents generally expressed a preference for receiving routine SUDEP counseling at the time of the diagnosis of epilepsy. Across all groups of parents, it was identified that SUDEP counseling should occur in a face-to-face interaction with the neurologist. In learning about SUDEP, parents expressed a need to be informed of the risk of SUDEP. There was group endorsement for receiving written information about SUDEP to reinforce the content shared by the neurologist. There was a consensus that it should be the parents' decision as to whether or not the child should be present at the meeting or when to inform the child about the risk of SUDEP., Conclusion: Participants in this study opined that all parents of children with epilepsy should receive routine SUDEP counseling and have access to ongoing professional support. Based on these findings, it is imperative for pediatric neurologists to refine their communication skills when counseling parents about SUDEP., (© 2013.)

How do age of onset and duration of epilepsy correlate with each other and with patient-reported outcomes? To address this question, we explored whether age of onset, duration, and proportion of life with epilepsy are either similar or relatively independent variables that can be used as markers on how children experience the complexity of epilepsy and adjustment. Three hundred ninety-one Canadian and 266 Hong Kong youth with epilepsy completed the childhood epilepsy-specific quality of life (QOL) measure (CHEQOL-25). Each cohort was separately stratified by tertiles for age of onset, life proportion with epilepsy, and duration of epilepsy. Pearson's r was used for correlation analysis. The epilepsy age-related variables correlated strongly with each other among children with epilepsy onset ≤4 years (r = 0.53-0.66). The correlation between these variables was weaker with an onset ≥9 years (r =0.22-0.35). Correlation with QOL was clinically non-significant. These variables appear to measure the same phenomenon only in children with early epilepsy onset (<4 years) and explain little variance in QOL., (Copyright © 2012 Elsevier Inc. All rights reserved.)

Objectives: To explore, identify and understand the contribution that biomedical and psychosocial factors make to the assessment of health-related quality of life (HRQL) of children and youth with epilepsy using the CHEQOL-25., Methods: We identified and measured variables that may influence HRQL; grouped the variables into four conceptual categories; and used simple and hierarchical linear regressions to model CHEQOL-25 as a function of these variable groupings. Participants were 8-15year olds with epilepsy and their parents., Results: 131 child and parent pairs participated. Overall, the unique variances associated with the biomedical and psychosocial variables are R(2)=0.22 and 0.29, respectively, for child self-reported HRQL and R(2)=0.11 and 0.13, respectively, for parent-proxy report., Conclusions: This study increases our understanding of factors that contribute to the expression of HRQL in this population. These results should be interpreted with caution due to the limited sample size and large number of variables., (Copyright (c) 2010 Elsevier Inc. All rights reserved.)

The objectives of this study were to translate into Serbian the Health-Related Quality of Life Measure for Children with Epilepsy (CHEQOL-25) and to provide preliminary data on its measurement properties. Translation, cultural adaptation, and pretesting were performed first, followed by evaluation of several reliability aspects of this version administered to 50 children with epilepsy and their parents. The mean scores of the CHEQOL-25 subscales ranged from 12.2 to 14.4 for children and from 12.4 to 15 for parents (possible range: 5-20). The internal consistency coefficients of the subscales ranged from 0.11 to 0.87. Between the children's and parents' reports, there was a moderate level of agreement (0.43-0.57). It was concluded that the Serbian version is a feasible measure, all subscales except one demonstrate sufficient reliability, and a parent form could be used as a proxy measure.

Objective: The primary aim of our study was to compare the health-related quality of life (HRQL) of children with epilepsy in Hong Kong with that of children with epilepsy in Canada, and to explore possible factors affecting these findings. A second interest was to determine agreement between proxy reports and self-ratings among children with epilepsy in Hong Kong, compare these with findings in Canada, and identify factors that influence the concordance., Methods: Child self-report and parent-proxy questionnaires on an epilepsy-specific HRQL measure, appropriately translated and validated in Chinese, were administered to 266 Hong Kong children and their parents. An unpaired t test was used to compare the scores with published results from 381 Canadian children and their parents, who used the original English version of the measure. Demographic characteristics of the two groups were compared using t tests, chi2 tests, and Fisher's exact tests. Agreement between parents' and children's scores was evaluated with intraclass correlation coefficients (ICCs) and standardized response means (SRMs). The total HRQL score differences between parents and children in Hong Kong were compared with those in Canada using an unpaired t test. Factors that might affect the parent-child score difference were studied using Pearson correlation analysis, chi2 test, and analysis of variance. Factors studied included: sex, current age, age at diagnosis, duration of epilepsy, number of antiepileptic drugs used, type of seizure, seizure severity, cognition of the child, the type of school attended, presence of neurological problems, presence of behavioral problems, recent health care usage, education and employment status of both parents, housing status of the family, and relationship of the proxy respondent to the child., Results: (1) In contrast to the Canadian sample, Hong Kong children with epilepsy were older (P<0.01), had a longer duration of epilepsy (P<0.01) and less severe seizures (P<0.01), and were more likely to attend normal schools (P<0.01). Children in Hong Kong reported more interpersonal/social difficulties (P<0.01), more worries (P<0.01), and more secrecy about their epilepsy (P<0.01). Parents in Hong Kong believed that their children perceived more worries (P<0.01) and were more secretive about their epilepsy (P<0.01). (2) Moderate to good agreement between parent-proxy response scores and child self-report scores was demonstrated (ICC=0.50-0.69, SRM=0.19-0.33). The total HRQL score differences between parent and child in Hong Kong were not different from those in Canada. None of the factors studied were related to the parent-child score difference., Conclusions: Youth with epilepsy in Hong Kong and their parents reported poorer quality of life than children with epilepsy in Canada. Further studies are necessary to identify the determinants of HRQL in children with epilepsy in different cultures. Acceptable agreement between the two ratings suggests that proxy reports can be used when child self-reports cannot be obtained.

Purpose: The goal of this article is to report on the translation and reliability studies of the Parent-Proxy Response Scale of Quality of Life Measure for Children with Epilepsy for Hong Kong Chinese children., Methods: In phase 1, forward and backward translations, expert panel review, and a series of pilot testing, cognitive interviewing, and pretesting with parents produced a Chinese translation. Content validity of the translated instrument was assessed. In phase 2, internal consistency was evaluated in 40 parents of children with epilepsy aged 8 to 18. Test-retest reliability was studied in 33 parents., Results: The translation was judged to have good content validity by experts and was acceptable to parents. Internal consistency was good (Cronbach alpha=0.71-0.92). Test-retest reliability, determined with the intraclass correlation coefficient, ranged between 0.51 and 0.84., Conclusions: Our data suggest acceptable content validity, internal consistency, and reliability of the Chinese version of the Parent-Proxy Response Scale of the Quality of Life Measure for Children with Epilepsy. Studies with larger samples should be performed to further confirm other psychometric properties of the translated instrument.