Measurement equivalence of the newly developed Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55)

Summary Objective The aim of this study was to examine measurement equivalence of the newly developed Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55) across age, sex, and time in a representative sample of children with newly diagnosed epilepsy. Methods Data come from 373 children enrolled in the Health-related Quality of Life in Children with Epilepsy Study (HERQULES), a multisite prospective cohort study. Measurement equivalence was examined using a multiple-group confirmatory factor analysis framework, whereby increasingly stringent parameter constraints are imposed on the model. Comparison groups were stratified based on age (4-7 years vs. 8-12 years), sex (male vs. female), and time (measurement of health-related quality of life at diagnosis vs. 24 months later). Results The QOLCE-55 demonstrated measurement equivalence at the level of strict invariance for each model tested - age: χ2 (3,123) = 4,097.3, p \u3c 0.001; Comparative Fit Index (CFI) = 0.968; Root Mean Square Error of Approximation (RMSEA) = 0.042 (0.038, 0.045); sex: χ2 (3,124) = 4,188.3, p \u3c 0.001; CFI = 0.964; RMSEA = 0.044 (0.040, 0.047); and time: χ2 (3,121) = 5,185.0, p \u3c 0.001; CFI = 0.965; RMSEA = 0.046 (0.043, 0.048). Significance These findings suggest that items comprising the QOLCE-55 are perceived similarly among groups stratified by age, sex, and time and provide further evidence supporting the validity of the scale in children with epilepsy. Health professionals and researchers should be confident that group comparisons made using the QOLCE-55 are unbiased and that any group differences detected are meaningful; that is, not related to differences in the interpretation of items by informants. Future research replicating these findings is encouraged

Emotional well-being in children with epilepsy: Family factors as mediators and moderators

Objective: Our objective was to examine the relationships of factors associated with children\u27s emotional well-being 2 years after diagnosis, and to examine if these relationships are mediated or moderated by family factors. Methods: Data came from a multicenter prospective cohort study of children with newly diagnosed epilepsy from across Canada (Health-Related Quality of Life in Children with Epilepsy Study; HERQULES, n = 373). Emotional well-being was assessed using the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55). The relationships between clinical factors, family factors, and emotional well-being were assessed using multiple regression analyses. Results: Family functioning, family stress, and repertoire of resources that the families had to adapt to stressful events were significantly associated with poor emotional well-being 2 years after diagnosis (p \u3c 0.05) in the multivariable analysis. The effect of parental depressive symptoms was partially mediated by family functioning and family stress (p \u3c 0.01 and p = 0.02, respectively). Family resources acted as a moderator in the relationship between severity of epilepsy and emotional well-being (p \u3c 0.05). Significance: Based on our findings, efforts to strengthen the family environment may warrant attention. We suggest that clinicians take a family centered care approach by including families in treatment planning. Family centered care has been shown to improve family well-being and coping and in turn may reduce the impact of clinical factors on emotional well-being to improve long-term health-related quality of life

Perceived potentially inappropriate treatment in the PICU: frequency, contributing factors and the distress it triggers

BackgroundPotentially inappropriate treatment in critically ill adults is associated with healthcare provider distress and burnout. Knowledge regarding perceived potentially inappropriate treatment amongst pediatric healthcare providers is limited.ObjectivesDetermine the frequency and factors associated with potentially inappropriate treatment in critically ill children as perceived by providers, and describe the factors that providers report contribute to the distress they experience when providing treatment perceived as potentially inappropriate.MethodsProspective observational mixed-methods study in a single tertiary level PICU conducted between March 2 and September 14, 2018. Patients 0–17 years inclusive with: (1) ≥1 organ system dysfunction (2) moderate to severe mental and physical disabilities, or (3) baseline dependence on medical technology were enrolled if they remained admitted to the PICU for ≥48 h, and were not medically fit for transfer/discharge. The frequency of perceived potentially inappropriate treatment was stratified into three groups based on degree of consensus (1, 2 or 3 providers) regarding the appropriateness of ongoing active treatment per enrolled patient. Distress was self-reported using a 100-point scale.ResultsOf 374 patients admitted during the study, 133 satisfied the inclusion-exclusion criteria. Eighteen patients (unanimous - 3 patients, 2 providers - 7 patients; single provider - 8 patients) were perceived as receiving potentially inappropriate treatment; unanimous consensus was associated with 100% mortality on 3-month follow up post PICU discharge. Fifty-three percent of providers experienced distress secondary to providing treatment perceived as potentially inappropriate. Qualitative thematic analysis revealed five themes regarding factors associated with provider distress: (1) suffering including a sense of causing harm, (2) conflict, (3) quality of life, (4) resource utilization, and (5) uncertainty.ConclusionsWhile treatment perceived as potentially inappropriate was infrequent, provider distress was commonly observed. By identifying specific factor(s) contributing to perceived potentially inappropriate treatment and any associated provider distress, organizations can design, implement and assess targeted interventions

Infants Born Large for Gestational Age and Developmental Attainment in Early Childhood

Objectives To investigate if an association exists between being born large for gestational age (LGA) and verbal ability or externalizing behaviour problems at ages 4-5 years. Method A secondary analysis was conducted using the National Longitudinal Survey of Children and Youth, including singleton births in 2004-2005 followed till 4-5 years ( Results Infants born LGA were not found to be at increased risk for poor verbal ability (aOR: 1.16 [0.49,2.72] and aOR: 0.83 [0.37,1.87] for girls and boys, resp.) or externalizing behaviour problems (aOR: 1.24 [0.52,2.93] and aOR: 1.24 [0.66,2.36] for girls and boys, resp.). Social factors were found to impact developmental attainment. Maternal smoking led to an increased risk for externalizing behaviour problems (aOR: 3.33 [1.60,6.94] and aOR: 2.12 [1.09,4.13] for girls and boys, resp.). Conclusion There is no evidence to suggest that infants born LGA are at increased risk for poor verbal ability or externalizing behaviour problems

Prevalence and trajectories of depressive symptoms in mothers of children with newly diagnosed epilepsy

Purpose: To examine the prevalence, trajectories, and predictors of depressive symptoms (DS) in mothers of children with new-onset epilepsy. Methods: A sample of 339 mothers was analyzed from the health-related quality of life in children with epilepsy study assessed four times during the first 24 months after diagnosis. Mothers\u27 DS were measured using the Center for Epidemiological Studies Depression Scale. Trajectories of DS were investigated using group-based trajectory modeling, and maternal, child, and family factors were compared across groups using analysis of variance (ANOVA) and chi square tests. Multinomial logistic regression identified predictors of DS trajectories. Key Findings: A total of 258 mothers completed the study. Prevalence of depression ranged from 30-38% across four times within the first 24 months after their child\u27s diagnosis. Four trajectories of DS were observed: low stable (59%), borderline (25%), moderate increasing (9%), and high decreasing (7%). Using the low stable group as the reference group, the borderline group was younger, had worse family functioning, and fewer family resources; the moderate increasing group was younger, had children with cognitive problems, worse family functioning, and more family demands; and the high decreasing group had less education and children with lower quality of life. Significance: Risk for clinical depression is common among mothers of children with new-onset epilepsy. These mothers are not homogenous, but consist of groups with different trajectories and predictors of DS. Child\u27s cognitive problems was the strongest predictor identified; epilepsy severity did not predict DS trajectory. Health care professionals should consider routinely assessing maternal depression during clinic visits for pediatric epilepsy. © 2010 International League Against Epilepsy

The impact of maternal depressive symptoms on health-related quality of life in children with epilepsy: A prospective study of family environment as mediators and moderators

Purpose: To examine the impact of maternal depressive symptoms (DS) on health-related quality of life (HRQL) in children with new-onset epilepsy and to identify family factors that moderate and mediate this relationship during the first 24 months after epilepsy diagnosis. Methods: A sample of 339 mother-child dyads recruited from pediatric neurologists across Canada in the Health-related Quality of Life in Children with Epilepsy Study. Mothers\u27 and neurologists\u27 reports were collected at four times during the 24-month follow-up. Mothers\u27 DS were measured using the Center for Epidemiological Studies Depression Scale (CES-D) and children\u27s HRQL using the Quality of Life in Childhood Epilepsy (QOLCE). Data were modeled using individual growth curve modeling. Key Findings: Maternal DS were observed to have a negative impact on QOLCE scores at 24 months (β = -0.47, p \u3c 0.0001) and the rate of change in QOLCE scores during follow-up (β = -0.04, p = 0.0250). This relationship was moderated by family resources (β = 0.25, p = 0.0243), and the magnitude of moderation varied over time (β = 0.09, p = 0.0212). Family functioning and demands partially mediated the impact of maternal DS on child HRQL (β = -0.07, p = 0.0007; β = -0.12, p = 0.0006). Significance: Maternal DS negatively impact child HRQL in new-onset epilepsy during the first 24 months after diagnosis. This relationship is moderated by family resources and mediated by family functioning and demands. By adopting family centered approaches, health care professionals may be able to intervene at the maternal or family level to promote more positive outcomes in children. © 2010 International League Against Epilepsy

Fatigue in young people with Duchenne muscular dystrophy

AIM: To describe fatigue in Duchenne muscular dystrophy (DMD) from patients\u27 and parents\u27 perspectives and to explore risk factors for fatigue in children and adolescents with DMD. METHOD: A multicentre, cross-sectional study design was used. Seventy-one patients (all males; median age 12y, age range 5-17y) identified via the Canadian Neuromuscular Disease Registry, and their parents completed questionnaires. Subjective fatigue was assessed using the Pediatric Quality of Life Inventory Multidimensional Fatigue Scale by child self-report and parent proxy-report. RESULTS: Patients with DMD across ages and disease stages experienced greater fatigue compared to typically developing controls from published data. Sleep disturbance symptoms were associated with greater fatigue by child self-report (ρ=-0.42; p=0.003) and parent proxy-report (ρ=-0.51; p INTERPRETATION: In paediatric DMD, sleep disturbance symptoms and depressive symptoms are potentially modifiable factors associated with fatigue, warranting additional investigation to facilitate the development of therapeutic strategies to reduce fatigue. WHAT THIS PAPER ADDS: Fatigue is a major issue in paediatric Duchenne muscular dystrophy (DMD) across ages and disease stages. Sleep disturbance and depressive symptoms are significantly associated with fatigue in paediatric DMD

The prevalence and impact of adolescent hospitalization to adult psychiatric units.

BACKGROUND: With increasing psychiatric hospitalizations among adolescents and constrained hospital resources, there are times when youth are hospitalized in adult inpatient psychiatry units. Evidence on the prevalence of this practice and associated impacts is lacking. AIMS: We sought to explore the prevalence, determinants, and outcomes related to the hospitalization of adolescents aged 12-17 years on adult inpatient psychiatry units in Ontario. METHODS: Using health administrative data, we constructed a cohort of adolescents with an inpatient psychiatric admission in Ontario (2007-2011). We classified adolescents as having an admission to an adult psychiatry unit or to other inpatient units. Multivariable regression models were used to estimate prevalence ratios (PR) for factors associated with adult admission, as well as risk ratios (RR) for the impact of adult admission on length of stay, discharge against medical advice, and 30-day readmission. RESULTS: Over the study period, 22.6% of adolescents with a psychiatric hospitalization (n = 16 998) had an admission to an adult psychiatry unit. Older age (16 vs. 15 years: PR = 2.27, 95% CI = 2.07-2.48; 17 vs. 15 years: PR = 2.91, 95% CI = 2.66-3.18), rural residence (PR = 1.46, 95% CI = 1.38-1.55), psychotic (PR = 1.25, 95% CI = 1.15-1.36) or personality disorder (PR = 1.59, 95% CI = 1.41-1.80) diagnoses, and involuntary status (PR = 2.18, 95% CI = 2.05-2.31) were independently associated with adult admission. Adolescents admitted to adult units were more likely to be discharged against medical advice (RR = 1.77, 95% CI = 1.45-2.17). CONCLUSIONS: Nearly one in four adolescent psychiatric admissions occurs on an adult psychiatric unit. These findings help to fill gaps in the prior literature, and highlight the need for further research to inform policy decisions and resource allocation for adolescent inpatient psychiatric care

An evaluation of the measurement properties of the Mentor Self-Efficacy Scale among participants in Big Brothers Big Sisters of Canada Community Mentoring Programs

The measurement properties of a newly developed instrument, Mentor Self-Efficacy Scale, were examined among 249 Big Brothers Big Sisters (BBBS) mentor, child, and parent triads. The unidimensional scale demonstrated acceptable reliability (α = 0.81) and convergent validity, with mentor self-efficacy (MSE) correlating with mentor reported global (r = 0.28, p<0.001) and engagement (r = 0.44, p<0.001) mentoring relationship quality (MRQ). The scale also yielded acceptable predictive validity, with MSE predicting mentor reported engagement MRQ (β = 0.28, p = 0.001). Results will contribute to future research using the scale to augment BBBS policies