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BACKGROUND This exploratory proof of principle study examined the extent to which behavior problems represent a functional characteristic that crosses diagnostic boundaries. METHODS This cross-sectional study pertains to 179 caregivers of children, aged 4-13 years (M = 8.27) with cerebral palsy (n = 77), autism spectrum disorder (n = 58), and global developmental delay/intellectual disability (n = 44). Caregivers completed the Strengths and Difficulties Questionnaire, which provides a measure of conduct problems, emotional symptoms, hyperactivity-inattention, peer problems, as well as total difficulties. RESULTS Behavior problem severity differed across diagnostic groups (p < .001). Visual examination of box plots indicated substantial overlap within Strengths and Difficulties Questionnaire subscales across children with autism spectrum disorder, cerebral palsy, and global developmental delay/intellectual disability. Children within each condition demonstrated matching profile topographies, such that hyperactivity-inattention difficulties were most severe. Repeated measures analysis of variances confirmed that children within each group received significantly higher ratings on the hyperactivity-inattention subscale (all p < .001). CONCLUSIONS The approach adopted to examine the data and findings have the potential to inform how we conceptualize and study behavior problems among children with neurodevelopmental conditions. Importantly, children with particular conditions did not demonstrate unique constellations of difficulties. Clinicians must therefore be attuned to the possibility of commonality in behavior problems across children with disparate diagnoses, irrespective of syndrome-specific expectations.

Background Caring for a child with a neurodisability (ND) impacts the financial decisions, relationships and well‐being of family members, but evidence on the economic trajectories of families throughout the life course is missing. Methods Using data from the Panel Study of Income Dynamics, we tracked the families of 3317 children starting 5 years before childbirth until the child reached 20 years of age. We used regression and latent growth curve modelling to estimate trajectories of poverty and economic hardship over time. Results Families with a child with an ND had higher rates of poverty and economic hardship prior to childbirth and persistently over time. Analysis uncovered five latent trajectories for each indicator. After controlling for family and caregiver characteristics that preceded the birth of the child, raising a child with an ND was not associated with a unique trajectory of poverty. Families raising a child with an ND were however more likely to experience persistent economic hardship. Conclusions The study establishes descriptive evidence for how having a child with an ND relates to changes in family economic conditions. The social and economic conditions that precede the child's birth seem to be driving the economic inequalities observed later throughout the life course.

Purpose To examine household income trajectories of children with and without neurodisability over a period of 6 years. Method We used four cycles of the Canadian National Longitudinal Survey of Children and Youth, a longitudinal study of the development and well-being of Canadian children from birth into adulthood. Results While household income increased over time for both groups, families of children with neurodisability had consistently lower household income compared to families of children without neurodisability even after controlling for child and family socio-demographic characteristics. The presence of an interaction effect between parent work status and child with neurodisability at baseline indicated that among children whose parent(s) were not working at baseline, household incomes did not differ between children with and without neurodisability. Conclusions The association between child with neurodisability and lower household income may not hold for all types of parents', working status is an important consideration. Implications for Rehabilitation Findings support the health selection hypothesis that health status shapes diverging economic conditions over time: children with a ND have lower household incomes than children without a ND child across all waves of the Canadian National Longitudinal Survey of Youth. Income gaps did not increase or decrease over time; rehabilitation services and policies must consider the lower average incomes associated with raising a child with a ND. Social assistance support likely plays a key role in closing the gap, especially for non-working families.

Patient-oriented research engages patients and caregivers as partners contributing to all phases of the research process. This was the goal of the Strongest Families Institute Neurodevelopmental research, in Halifax, Nova Scotia, when they included a parent advisory committee, made up of parents and caregivers of children and adolescents with a neurodevelopmental condition, to complete their research project. The purpose of this qualitative research was to examine the experiences of researchers and parents of children with a neurodevelopmental condition who participated on a research study advisory committee for the Strongest Families Neurodevelopment research project. From interviews with both parents/caregivers and researchers that played a role on the advisory committee, four major themes emerged on how to negotiate and navigate their time on the committee and what worked well and what did not. This led to recommendations for future researchers and patients who may create or be a part of an advisory committee.

Social Determinants of Health is a conceptual framework typically used to understand patterns of health and ill-health at the population level. Its applicability to children and youth who already have a health condition, in this case, a neurodisability, is not well understood, particularly when the “health” component of that framework is extended to include more pluralistic notions of well-being. The purpose of this study was to address this challenge and to develop an ecosocial framework that is conceptually integrative and meaningful to children and youth with neurodisabilities and their families. Drawing on a critical literature review, a conceptual analysis approach, and a secondary analysis of a compendium of 36 social determinants of health models, we critically analysed how these models map onto the context of childhood neurodisability and identified key conceptual and empirical challenges. The emerging framework was further validated through iterative stakeholder consultation with parents, self-advocates, researchers, practitioners, community leaders, and decision-makers. The review and consultation process generated The Canadian Framework for Social Determinants of Health and Well-being among Children with Neurodisabilities and their Families. This new framework consists of two hemispheres encompassing explanatory (or observational) and action-oriented (or transformational) components relating to social determinants of health and well-being and living a daily life of quality in childhood neurodisability. The proposed framework provides a roadmap for practitioners, policy-makers, and researchers as well as activists, families, and communities, to reflect on both social determinants and social change processes that shape the health, well-being, and everyday lives of children and youth with neurodisabilities and their families.IMPLICATIONS FOR REHABILITATIONSocial Determinants of Health provides a conceptual framework for understanding the social causes and consequences of health and ill-health at the population level.In childhood neurodisability, however, it is important to consider pluralistic notions of “well-being” and living a daily “life of quality” that may relate, but are not limited, to health.The Canadian Framework for Social Determinants of Health and Well-being among Children with Neurodisabilities and their Families comprises an explanatory hemisphere of social determinants, factors, and contingencies, and an action-oriented hemisphere that identifies different forms and levels of mobilization that can guide rehabilitation practice to achieve social change in the lives of children, youth, and their families.Using an ecosocial perspective, this framework provides a roadmap for future research and policy development that is relevant to children and families as well as to current perspectives in rehabilitation, social and health justice, and childhood, disability, and neurodiversity rights. Social Determinants of Health provides a conceptual framework for understanding the social causes and consequences of health and ill-health at the population level. In childhood neurodisability, however, it is important to consider pluralistic notions of “well-being” and living a daily “life of quality” that may relate, but are not limited, to health. The Canadian Framework for Social Determinants of Health and Well-being among Children with Neurodisabilities and their Families comprises an explanatory hemisphere of social determinants, factors, and contingencies, and an action-oriented hemisphere that identifies different forms and levels of mobilization that can guide rehabilitation practice to achieve social change in the lives of children, youth, and their families. Using an ecosocial perspective, this framework provides a roadmap for future research and policy development that is relevant to children and families as well as to current perspectives in rehabilitation, social and health justice, and childhood, disability, and neurodiversity rights.

The aim of this study was to identify children with neurodevelopmental disorders and disabilities (NDD/D) and compare their healthcare service utilization to children without NDD/D using provincial linked administrative data.The sample included children aged 6 to 10 years (n=183 041), who were registered with the British Columbia Medical Services Plan. Diagnostic information was used for the identification and classification of NDD/D in six functional domains. Healthcare service utilization included outcomes based on physician claims, prescription medication use, and hospitalization.Overall, 8.3% of children were identified with NDD/D. Children with NDD/D had higher healthcare service utilization rates than those without NDD/D. Effect sizes were: very large for the number of days a prescription medication was dispensed; large for the number of prescriptions; medium for the number of physician visits, different specialists visited, number of different prescription medications, and ever hospitalized; and small for the number of laboratory visits, X-ray visits, and number of days hospitalized.The findings have policy implications for service and resource planning. Given the high use of psychostimulants, specialized services for both NDD/D and psychiatric conditions may be the most needed services for children with NDD/D. Future studies may examine patterns of physician behaviours and costs attributable to healthcare service utilization for children with NDD/D.Children with neurodevelopmental disorders and disabilities (NDD/D) have higher healthcare service utilization than those without. Based on provincial population-based linked administrative health data, a sizeable number of children are living with NDD/D. Given the high use of psychostimulants, specialized services for children with both NDD/D and psychiatric conditions may be the most needed services for children with NDD/D.

The importance of the family environment for the development of children with neurodisabilities is undisputed. The objective of this study is to describe how family environment has been measured in research on families of children with neurodisabilities, in order to support researchers and clinicians to select appropriate methods for use. A three-step approach was used and 13 measures of family environment were identified within 77 studies. Five measures were used most commonly across a majority of studies (n=50). The measures varied considerably in terms of theoretical background, content, subscales, and populations for which they were developed and validated. These measures were used with considerable variability between studies and with a limited range of research respondents, most typically the child's mother. Challenges, opportunities, and suggestions on how to improve the application of family environment measures in research are discussed.

A scoping review of the literature on parenting programmes that target the promotion of adolescent mental health was conducted to examine the quality of the studies and unique content of programmes for parents from ethnoculturally diverse communities. PsycINFO and Web of Science were searched in April, 2011 (for all publications prior to that date) and again in August, 2015 (for publications from April, 2011 to August, 2015) using specific keywords and inclusion criteria. A hand search was also conducted. Overall, 107 studies met inclusion criteria for final data extraction and included evaluations of interventions targeted at substance use, early/risky sexual activity and behavioural problems. Eighteen of the 107 studies described programmes targeting parents of adolescents from diverse ethnocultural communities; the quality of these 18 studies was assessed using a marginally modified version of the Downs and Black Checklist (Downs & Black 1998). Their average quality assessment score was 16 out of 28. In addition, two key themes reflected in successful interventions emerged: strengthening parent-adolescent relationship through communication, and importance of community engagement in designing and implementing the intervention. Findings indicate gaps in service delivery to parents of adolescents from ethnoculturally diverse communities; there are a limited number of studies on programmes targeting ethnoculturally diverse parents of adolescents, and the quality of studies that do exist is overall low. Given increasing diversity, more emphasis should be placed on developing and modifying programmes to meet the needs of ethnoculturally diverse communities. More rigorous, standardised efforts should be made to evaluate programmes that do exist.

Background Raising a child with a neurodevelopmental disorder or disability (NDD/D) presents unique challenges to the family, and presence of behavior problems has been identified as a critical risk factor for a broad range of family outcomes. Aims The current study examines whether caregivers’ perceptions of child and family service adequacy mediate or moderate the relation between children’s behavioral difficulties and negative family impact. Methods and procedures Caregivers provided data for 215 children with NDD/D (M = 8.16 years), completing measures of child behavior problems (Strengths and Difficulties Questionnaire), perceived child and family service inadequacy (Supports and Services Questionnaire), and family impact (Family Impact of Childhood Disability Scale). Outcomes and results Both child and family service inadequacy partially mediated, but did not moderate the association between child behavior problems and perceived negative family impact. Conclusions and implications The current study highlights that all families of children with NDD/D are in need of support, irrespective of the severity of their child’s behavioral difficulties. Furthermore, the findings reinforce that access to a range of supports serving both the child and family is critical to ameliorating negative perceptions regarding the impact of a child’s disability on family life.

Objectives To study the extent to which parents are able to serve as true proxies for their children with epilepsy using a more granular approach than has been found in any study to date. Methods Proxy resemblance to the child was based on discrepancy in z-centered child minus parent scores of matching quality-of-life (QOL) domains for 477 dyads. Latent class mixed models (LCMMs) were built, with child's age as the independent variable for epilepsy-specific and generic QOL. Data were obtained from the QUALITE Canadian cohort, which recruited children with epilepsy aged 8 to 14 years at baseline and their parents. Results Both epilepsy-specific and generic LCMMs produced latent classes representing proxies that were overly positive, overly negative, or in agreement relative to their children with posterior probabilities of 79% to 84%. The “agreement” classes had N = 411 and N = 349 in the epilepsy-specific and generic LCMMs, respectively. The epilepsy-specific LCMM had a small unique class of N = 5 with a posterior probability of 88% called “growing discrepancy.” Conclusions Most parents of children with epilepsy can serve as valid proxies for their children on QOL scales. Poorer parental adaptation is more related to overly negative proxies, whereas low peer support from the child's perspective is more related to overly positive proxies.

Background: In the past thirty years, theoretical and empirical scholarship on father involvement has emerged and firmly established itself. Efforts to define, measure, and explore outcomes related to father involvement in the context of childhood neurodisability are evident but less well established. The purpose of this study was to systematically map empirical studies on father involvement in the context of childhood neurodisability in order to delineate the current state of research and to highlight profitable directions for future research. Methods: A rigorous scoping review method was used to select and analyze empirical studies published between the years 1988 and 2016 in order to systematically map research findings about fathers’ affective, behavioral, and cognitive involvement. Results: Fifty-four (n = 54) studies (quantitative n = 47 and qualitative n = 7) met inclusion criteria associated with three levels of review. Four main trends emerged: (a) paternal “stress” is a main concept of interest; (b) comparison of mothers and fathers on affective and cognitive involvement; (c) lack of a focus on fathers’ behavioral involvement, and (d) the absence of research designs that allow for examination of fathers’ unique perspectives. Conclusions: Fathers are generally underrepresented in research in the context of childhood neurodisability. While there is a lack of depth in this area of research, granular analyses revealed important and unique differences about fathers’ parenting experiences. Recommendations for research and practice are provided.Implications for rehabilitationFathers are underrepresented in the parenting in childhood neurodisability literature.Fathers who report feeling competent in parenting and connected to their child also report less parenting distress and more satisfaction in their couple relationship and family environment.Rehabilitation and allied health professionals should include fathers in parenting/family assessments.Manifestation of distress may differ among family members. Rehabilitation and allied health professionals should offer individualized care that is attuned to the needs of all family members. Fathers are underrepresented in the parenting in childhood neurodisability literature. Fathers who report feeling competent in parenting and connected to their child also report less parenting distress and more satisfaction in their couple relationship and family environment. Rehabilitation and allied health professionals should include fathers in parenting/family assessments. Manifestation of distress may differ among family members. Rehabilitation and allied health professionals should offer individualized care that is attuned to the needs of all family members.

The aim of the current study was to identify functional predictors of perceived impact of childhood disability among families of children with neurodevelopmental disorders and disabilities. We first examined the relationship between sub-domains of adaptive and problematic behaviour and perceived family impact. Second, we examined whether the same sub-domains would emerge as significant after controlling for the impact of child diagnosis, including autism spectrum disorder, cerebral palsy and intellectual disability.Caregivers of 216 children and adolescents (M = 8.17 years) with neurodevelopmental disorder and disability completed measures of children's practical, conceptual and social skills (i.e. adaptive behaviour), behaviour problems and positive and negative family impact.Indices of child adaptive and problematic behaviour were only significantly associated with perceived negative family impact. Children's practical and social skills, as well as emotional symptoms, emerged as significant predictors of perceived negative family impact, with emotional symptoms accounting for greatest variance. Including diagnosis in our statistical models did not explain additional variance above and beyond these particular sub-domains of child functioning.The study findings suggest that it is not children's most impaired domains of functioning that are perceived as significantly impactful by the family. The findings highlight the importance of devoting consideration to the ways in which the functional limitations experienced by children with chronic developmental health conditions similarly impact family life and well-being, regardless of disorder designation.

This study examined cognitive function in young adults who had epilepsy surgery in childhood. Thirty-seven individuals with medically intractable epilepsy with onset at 16 years or younger who had resective epilepsy surgery at least two years in the past (mean follow-up duration of 8.5 years) were assessed; of these, 13 had seizures within the year prior to the study, and the remainder had none. A comparison group of 16 individuals with childhood-onset intractable epilepsy who had not had surgery, all of whom had experienced at least one seizure in the past 12 months, was also included. The cognitive tests included measures of vocabulary, visuoconstructive ability, memory, and concept formation. Group differences were found only for the vocabulary and verbal memory tests, with the surgical group with seizures having the lowest performance. A subset of the surgical patients had preoperative data available on comparable tests, allowing for an examination of performance over time. Vocabulary scores were higher at follow-up, a finding which was present irrespective of seizure status. The results suggest that after epilepsy surgery in childhood or adolescence, few improvements in cognitive skills related to surgery or seizure outcome are to be expected.

Background: The impact of childhood epilepsy can only be appreciated by understanding that epilepsy comprises a set of complex neurobehavioral conditions with significant social consequences, and not simply disorders of recurrent seizures. Our objective is to describe the hypotheses and methodology behind a large prospective longitudinal study that is based on a conceptual framework for understanding health outcomes. The study will quantify the specific influences—direct, mediating or moderating—that various epilepsy, comorbid, child, and family variables exert on health over the early life course. Methods: The target population is 8- to 14-year-old children with epilepsy and their caregivers from across Canada. Children, caregivers, and health professionals are completing 17 measures at five visits over a 28-month period. We have selected measures based on content, the source of the items, psychometric properties, and provisions for child self-report. Our cross-sectional and longitudinal design includes a relational model for structural equation modeling of specific biomedical and psychosocial variables with hierarchical direction of influence. To measure change over time, we will use hierarchical linear modeling. Significance: This article reports the framework for interpreting future data. We believe that it will help researchers consider their methodology and encourage them to plan and execute longitudinal studies. Furthermore, the article will help clinical readers identify what to look for when evaluating outcomes research. It is our belief that the next generation of research to understand life-course effect in the lives of children and youth with chronic conditions and their families must occur over real time.

Objectives. We used Canadian population-based data to examine changes in the health of caregivers of children with complex health problems compared with caregivers of healthy children over a 10-year time period. Methods. The National Longitudinal Survey of Children and Youth collected data biennially from 9401 children and their caregivers in 6 waves from 1994–1995 to 2004–2005. We conducted growth-curve analyses of these data to model self-reported general health and depressive symptoms for 4 groups of caregivers: caregivers of healthy children, and caregivers of children with 1, 2, or at least 3 of 4 conceptually distinct indicators of child health problems. We modeled covariates for children (age, gender, only-child status) and caregivers (age, gender, education, income, marital status). Results. After we controlled for covariates, caregiver health outcomes worsened incrementally with increasing complexity of child health problems. Change in self-reported general health and depressive symptoms over the 10-year period was consistent across all groups of caregivers. Conclusions. Poorer health among caregivers of children with health problems can persist for many years and is associated with complexity of child health problems. Attention to parental health should form a component of health care services for children with health problems.

In this study the authors address the quality of abstracts reviewed during a systematic review. Their objective was to describe the proportion of abstracts that could not be coded and to explore factors associated with that outcome. Using an exploratory design, a database of titles uploaded for analysis was examined for clarity, type and year of publication, and abstract format. Of the 1851 references examined, 481 (26%) were coded as unclear. The inter-rater reliability Kappa score was 0.777. These abstracts were more likely to have been published prior to 2002 and did not use a structured format. Abstracts are an important tool in the systematic review process. Structured abstracts can reduce the time and costs associated with conducting a systematic review.

Objectives. We used population-based data to evaluate whether caring for a child with health problems had implications for caregiver health after we controlled for relevant covariates. Methods. We used data on 9401 children and their caregivers from a population-based Canadian study. We performed analyses to compare 3633 healthy children with 2485 children with health problems. Caregiver health outcomes included chronic conditions, activity limitations, self-reported general health, depressive symptoms, social support, family functioning, and marital satisfaction. Covariates included family (single-parent status, number of children, income adequacy), caregiver (gender, age, education, smoking status, biological relationship to child), and child (age, gender) characteristics. Results. Logistic regression showed that caregivers of children with health problems had more than twice the odds of reporting chronic conditions, activity limitations, and elevated depressive symptoms, and had greater odds of reporting poorer general health than did caregivers of healthy children. Conclusions. Caregivers of children with health problems had substantially greater odds of health problems than did caregivers of healthy children. The findings are consistent with the movement toward family-centered services recognizing the link between caregivers' health and health of the children for whom they care.

Children and parents evaluate the child’s quality of life (QOL) from their own perspectives; therefore, responses may differ, especially in abstract domains. We examined differences between self- and proxy-reported QOL of children with epilepsy. Children with active epilepsy (N = 375) and their parents (N = 378) separately completed the CHEQOL-25, a condition-specific QOL measure. The intraclass correlation coefficient was used to determine interrater agreement. Concordance on the Total CHEQOL-25 was 0.45 (P < 0.01). Discrepancies were greatest for the subscales of Secrecy (0.24, P < 0.01) and Present Concerns (0.32, P < 0.01). School placement correlated with discrepancy in the Intrapersonal/Emotional subscale (r = 0.19, P < 0.05), and the child’s age at testing correlated with discrepancy of the Total measure (r = 0.15, P < 0.01). This study demonstrates that parent perspectives alone are insufficient to measure their child’s QOL. The CHEQOL-25 is a practical tool, with complementary parent and child versions, which can be used to determine health-related quality of life in children with epilepsy.

Children and youth with cerebral palsy (CP) experience difficulties in their ability to move, problem solve, socialize, and communicate, associated with limitations in activities in all environments. They are at risk for lower participation in social and leisure activities critical in fostering friendships, developing interests, and promoting well-being. Little is known about involvement in leisure activities and their determinants. This systematic review aims to describe participation in leisure activities by children with CP and identify personal and environmental factors that influence participation. The following databases were reviewed--CINAHL, Medline, Cochrane, Web of Science, OT-seeker, and REHABDATA--using the keywords participation, cerebral palsy, leisure, and recreation. The literature to date suggests that children with physical disabilities are less involved in leisure activities than their peers; activities are more passive, home based, and lack variety. Several factors influence participation in leisure activities, including age, gender, activity limitations, family preferences and coping, motivation, and environmental resources and supports.

About my Child, 26-item version (AMC-26) was developed as a measure of child health 'complexity' and has been proposed as a tool for understanding the functional needs of children and the priorities of families.The current study investigated the reliability and validity of AMC-26 with a sample of caregivers of children with neurodevelopmental disorders (NDD; n = 258) who completed AMC-26 as part of a larger study on parenting children with NDD. A subsample of children from the larger study (n = 49) were assessed using standardized measures of cognitive and adaptive functioning.Factor analysis revealed that a four-component model explained 51.12% of the variance. Cronbach's alpha was calculated for each of the four factors and for the scale as a whole, and ranged from 0.75 to 0.85, suggesting a high level of internal consistency. Construct validity was tested through comparisons with the results of standardized measures of child functioning. Predicted relationships for factors one, two and three were statistically significant and in the expected directions. Predictions for factor four were partially supported. AMC-26 was also expected to serve as an indicator of caregiver distress. Drawing on a sample of caregivers from the larger study (n = 251) the model was found to be significant and explained 23% of the variance in caregiver depressive symptoms (R(2) = .053, F (1, 249) = 14.06, P .001).Based on these observations, the authors contend that AMC-26 may be used by clinicians and researchers as a tool to capture child function and child health complexity. Such a measure may help elucidate the relationships between child complexity and family well-being. This is an important avenue for further investigation.

Few studies have examined the potential of linked administrative data for research on child health. This analysis describes the application of a non-categorical survey-based tool, the Children with Special Health Care Needs (CSHCN) Screener, to administrative data.Five Screener items were applied to linked administrative health data from Population Data British Columbia. Hospital admissions and demographic and community characteristics for a cohort of children aged 6 to 10 in 2006 were examined to validate the use of these items.Overall, 17.5% of children were identified as CSHCN. An estimated 14% of children used more medical care and 5.2% had more functional limitations than is usual for children of the same age; 3.3% were prescribed long-term medication; 1.9% needed/received treatment or counselling; and 0.1% needed/received special therapy. Boys were more likely than girls to be identified as CSHCN.With some limitations, the CSHCN Screener can be applied to Canadian administrative health data.

This qualitative study explores how children and adolescents with medically refractory seizures experience the impact of epilepsy on their quality of life (QOL) within the domains of physical, emotional/behavioral, social, and cognitive/academic function. Semi-structured, open-ended interviews were conducted with 49 participants (7-18 years old). These narratives constituted our data source. Analyses involved inductive generation of themes/subthemes and connection of these themes to generate a theoretical representation of their relationships. These themes reflected the negative impact of epilepsy on QOL: physical-excessive fatigue as a barrier to academic and social pursuits; emotional/behavioral-intermittent emotional distress heightened by epilepsy-related factors such as unpredictability of seizures; social-profound social isolation; and cognitive/academic-discontinuous, fragmented learning. Youths perceive seizures as the major barrier to their sense of normalcy, setting them apart from others. Findings provide direction for assessment and evidence for developing or enhancing clinical interventions and community/school-based programs that might mitigate some of these negative experiences.

Summary: Purpose: Assumptions regarding the benefits of seizure control after pediatric epilepsy surgery for cognitive, psychosocial, and family function were explored in a prospective study of 51 children with intractable epilepsy. Methods: Thirty children who underwent surgery were studied before and 1 year after surgery, and a comparison group of 21 children with medically refractory seizures was examined at comparable times. Results: One year after surgery, 57% of the surgical group was seizure free. Seizure status after surgery did not predict change over time in any of the areas measured. Cognitive and psychosocial status did not change over time in either group, and the strongest predictor of individual change in psychosocial status in the surgical group was baseline level of function. Within the surgical group, a trend toward an increase in independence promotion was noted in the family, but the children’s satisfaction with the family declined. Conclusions: These findings challenge the assumption that elimination of seizures will result in improved cognitive, psychosocial, and family functioning, at least within the first year after surgery. Key Words: Epilepsy surgery—Childhood— Cognitive—Psychosocial—Family.

Children with epilepsy have known deficits on objective measures of learning and memory. Parents and children report that memory deficits have a negative impact on everyday functioning. In adults with epilepsy, self-report of memory is more strongly associated with depression than performance on memory tests. We investigated the cognitive and psychological predictors of everyday memory in 37 children with medically intractable epilepsy, using children's self-report and parent ratings of everyday memory performance and standard tests of attention, intelligence, visual and verbal memory, working memory, and mood/emotional state. Standard multiple regressions demonstrated that only a parent report measure of attention uniquely and significantly ( P ⩽0.05) predicted estimates of everyday memory performance, accounting for 33% of variance in children's own ratings and 27% of variance in parents' ratings. Findings suggest that everyday memory in children with intractable epilepsy differs from that of adults; attentional problems may underlie everyday memory problems in these children.

Objective In the aftermath of child maltreatment or neglect, the health-related quality of life (HRQoL) in children is likely to be affected. However, research on quality of life in maltreated children is lacking. The aim of this study is to compare the HRQoL in a follow-up sample of children referred to an interdisciplinary hospital child protection team (CPT) to match controls and to explore correlates of HRQoL. Method Of the 319 in- and outpatient children referred to the CPT at the University Children’s Hospital Zurich between 2005 and 2006, an eligible sample of 180 children was contacted for a follow-up. HRQoL was assessed for 42 former patients using the self- and proxy-rated KIDSCREEN-27 for children above the age of 6 years and the TAPQOL parent report for children younger than 6 years. HRQoL-scores in the maltreatment group were compared with HRQoL in 39 matched controls. Results Self-reported HRQoL in maltreated children above the age of 6 years was significantly impaired compared to matched controls. The caregiver-rated HRQoL of maltreated children, however, was not affected. Low socioeconomic status and number of life events were associated with impaired self-reported HRQoL. Analyzed together with these factors, maltreatment lost its predictive power on HRQoL. Conclusion Maltreated children and adolescents suffer from impaired HRQoL even after the maltreatment has been disclosed and targeted by interventions. The impact of socioeconomic environment reinforces the importance of a multidisciplinary and systemic approach to maltreatment as applied by the CPT. Although the nature of discordance between child and caregiver report is not known, researchers and clinicians are strongly encouraged to assess the victim’s self-reported HRQoL independently of their proxies’ view.

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 (

This population-based study examined correlates of three parenting behaviors (positive interactions, consistency, and ineffective parenting) that have been shown to differ in children with neurodevelopmental disorders (NDDs), with and without externalizing behavior problems (EBPs), as compared to children with neither condition.The sample of children aged 4-11 (N = 14,226) was drawn from the Canadian National Longitudinal Survey of Children and Youth (NLSCY). Analyses examined the associations of child, parental, and social context factors with parenting behaviors, and whether they differed by child health group.Child age, family functioning, and social support variables were significant predictors of all three parenting behaviors. Significant interaction effects highlight the importance of the child's sex, birth order, and support received from community or social service professionals, and that these factors have differential impacts on parenting behaviors depending on the child's health group.Other Child, parent, and social context factors are associated with parenting behaviors but these associations vary by the child's health group. Parenting behaviors differ for children with NDDs with and without EBPs. These findings offer important implications for practice and research and point to the importance of considering multiple contexts of influence, as well as their interactions, in understanding differences in parenting behaviors.

The present qualitative study explored how participants perceive their quality of life within the social domain 2 years following epilepsy surgery. Semistructured, open-ended interviews were conducted with 27 participants (11–21 years old), 2 years following epilepsy surgery. Thirteen of the 27 participants were seizure free. Data were transcribed and coded inductively to allow for the identification of salient themes. Many of the seizure-free participants reported greater independence following surgery. However, most participants, irrespective of seizure status, continued to report some problems with peer relations and isolation. These findings suggest that self-perceived improvements in social function among seizure-free participants may require longer than 2 years to develop.

Purpose: Children with neurodevelopmental disorders (Neuro) pose complex parenting challenges, particularly if the condition co-occurs with behaviour problems. Such challenges are likely to impact caregiver health and well-being. This study explores the extent to which caregivers of children with both Neuro and behaviour problems differ in their physical and psychosocial outcomes from caregivers of children with either condition or neither condition. Method: The first wave of data collected in the National Longitudinal Survey of Children and Youth in Canada (1994) was used to identify four groups of caregivers of 4-to 11-year-old children: caregivers of children with a Neuro disorder and externalising behaviour problems (Both; n = 414), caregivers of children with a Neuro disorder only (Neuro Only; n = 750), caregivers of children with an externalising behaviour problem only (Ext Only; n = 1067), and caregivers of children with neither health condition (Neither; n = 7236). Results: Caregivers in the Both group were least likely to report excellent or very good health, and more frequently reported chronic conditions such as asthma, arthritis, back problems, migraine headaches, and limitations in activities as compared to the Neither group. This group also exhibited higher depression scores, experienced more problematic family functioning and reported lower social support than the Neither group. Scores for caregivers in the Ext Only and Neuro Only groups tended to lie between the Both and Neither group scores and often did not differ from one another. Conclusions: Caregivers of children with both neurovelopmental disorders and behaviour problems exhibited a greater number of health and psychosocial problems. While addressing children's behaviour problems, health care professionals should also consider caregiver physical and psychosocial health, as this may also have an impact on children's well-being.

Summary Purpose: We prospectively explored psychosocial outcomes in children (7–18 years) 2 years after epilepsy surgery. This study built on our previous one that examined these children 1 year after surgery. Methods: Twenty children were studied using the Child Behavior Checklist (CBCL; a parent report instrument of potential behavioral and social problems) preoperatively, 1 year and 2 years after surgery. A comparison group of 12 children with medically refractory seizures was examined at comparable times. We conducted mixed factorial ANOVAs to determine group, time, and interaction effects, and regression analyses to assess factors driving significant (p ≤ 0.05) interactions. We also investigated the proportion of children scoring in the abnormal range over time. Results: Significant main effects of time were observed on total behavior, externalizing, aggression, and delinquent behavior scales, with both groups reporting improvement. Main effects of group were observed for withdrawn and total competence scales, with the surgical group demonstrating favorable scores. Significant group × time interactions were observed on the social and social problems subscales. On both subscales, the surgical group demonstrated improvement over time, whereas the nonsurgical group experienced decline. Fifty percent of the surgical group remained seizure-free. Seizure status and number of antiepileptic medications predicted changes in social scores. We did not observe a significant regression model for the social problems subscale. Discussion: These findings suggest that change in social function may take time to develop after surgery. Prospective studies designed for longer periods are required to determine if improvements in other psychosocial domains are seen over time.

Children and adolescents with epilepsy are at increased risk for poor health-related quality of life (HRQL) even in the absence of active seizures. Clinicians who aim to achieve optimal seizure control also need to focus on improving HRQL. This can only be accomplished by recognizing how different features of the epilepsy itself, co-morbid conditions, as well as psychosocial factors can all make a difference to HRQL. These psychosocial factors include child, family and community/society variables that play a role in the well-being of these children. Conceptual models are relevant insofar as they provide us with a basis for hypothesizing the causal processes that lead to improved HRQL. They delineate what is meant by HRQL and highlight factors relevant to this important outcome. Researchers can use such models to test statistically and clinically relevant relationships. Clinicians can use this knowledge to direct the planning and implementation of services that are informed by these relationships, critically evaluate and then choose HRQL measures for use in clinical practice that most closely approximate what they understand HRQL is. The purpose of this review is to identify what is meant by HRQL as well as outline the theoretical and empirical basis for what it is about epilepsy, co-morbidity, and its treatment that we believe make a difference to HRQL.

Summary: Purpose: To compare neuropsychological performance of two groups of children with intractable epilepsy: those who are surgical candidates, and those who are not. Methods: Intelligence, verbal memory, visual memory, academic skills, and sustained attention were measured in children aged 6‐18 years. The effects of number of antiepileptic drugs (AEDs), seizure frequency, age at seizure onset, and duration of seizure disorder were examined. Results: Both groups had high rates of impairment. Group differences were found only on the verbal memory task. Children who experienced seizures in clusters had higher IQ, reading comprehension, and arithmetic scores. Age at seizure onset and proportion of life with seizures were related to IQ. Performance did not vary with AED monotherapy versus polytherapy. Conclusions: Few differences exist in cognitive performance between children with intractable seizures who are and those who are not surgical candidates. These findings suggest that children who are not surgical candidates can serve as good controls in studies on cognitive outcome of surgery. Key Words: Childhood epilepsy—Intelligence—Memory— Attention—Academic skills.

The authors report a case of radiation-associated intracerebral gliosarcoma with fibrosarcomatous predominance, arising at the site of a low-grade glioma treated 10 years previously. The features of this case conform to the accepted criteria for radiation-induced tumour, in that the tumour developed within the radiation field, differed dramatically in histologic features from the original tumour and did not develop until 10 years after treatment. Although such tumours are most uncommon, this case suggests that radiation-induced gliosarcoma should be considered in the differential diagnosis of recurrent mass at the site of a treated intracranial neoplasm.

Background Many definitions are being used to conceptualize child health problems. With survey data, commonly used indicators for identifying children with health problems have included chronic condition checklists, measures of activity limitations, elevated service use, and health utility thresholds. This study compares these different indicators in terms of the prevalence rates elicited, and in terms of how the subgroups identified differ. Methods Secondary data analyses used data from the National Longitudinal Survey of Children and Youth, which surveyed a nationally representative sample of Canadian children (n = 13,790). Descriptive analyses compared healthy children to those with health problems, as classified by any of the key indicators. Additional analyses examined differences between subgroups of children captured by a single indicator and those described as having health problems by multiple indicators. Results This study demonstrates that children captured by any of the indicators had poorer health than healthy children, despite the fact that over half the sample (52.2%) was characterized as having a health problem by at least one indicator. Rates of child ill health differed by indicator; 5.6% had an activity limitation, 9.2% exhibited a severe health difficulty, 31.7% reported a chronic condition, and 36.6% had elevated service use. Further, the four key indicators captured different types of children. Indicator groupings differed on child and socio-demographic factors. Compared to children identified by more than one indicator, those identified only by the severe health difficulty indicator displayed more cognitive problems (p < 0.0001), those identified only by the chronic condition checklist had a greater likelihood of reporting allergies or asthma (p < 0.0001), and those identified as having elevated service use only were more affluent (p = 0.01) and showed better overall health (p < 0.0001). Children identified by only a single indicator were less likely to have serious health problems than those identified by two or more indicators. Conclusion We provide information useful to researchers when selecting indicators from survey data to identify children with health problems. Researchers and policy makers need to be aware of the impact of such definitions on prevalence rates as well as on the composition of children classified as being in poor health.