Référence bibliographique 
Ronen, Gabriel M., Streiner, David L., Boyle, Michael H., Cunningham, Charles E., Lach, Lucyna, Verhey, Leonard H., Fayed, Nora, Chen, Karen et Rosenbaum, Peter L. 2014. «Outcomes Trajectories in Children With Epilepsy: Hypotheses and Methodology of a Canadian Longitudinal Observational Study ». Pediatric Neurology, vol. 50, no 1, p. 38-48.
«In recognizing that wellbeing is different from disease control, it is imperative that professionals pursuing outcomes research in childhood epilepsy expand their view of health determinants. In addition to the important biomedical treatment targets that are always being developed, we should consider the nonbiomedical factors at the personal and family levels that may be (1) important determinants of the overall outcomes of CYWE [children and youth with epilepsy] and (2) appropriate matches for effective interventions. In this project, the trajectories and end results refer to both objective indicators of functional status and participation as well as subjective indicators of HRQOL [health-related quality of life]. This article describes the hypotheses and methodology of a prospective longitudinal study that addresses current methodological concerns. It does not review the current literature on what is known on childhood epilepsy outcomes research or report results; rather, it serves to aid researchers in conceptualizing outcomes and planning future studies as well as providing a baseline for future reporting of our study findings.» (p. 39)
«We hypothesized that mental health, intellectual difficulties, and child and environmental factors will explain more of the variance in outcomes of CYWE than epilepsy and seizure-specific variables. In addition, changes in children’s outcomes over time will be related more strongly to child and environmental psychosocial factors than to epilepsy-specific variables. […] Consistent with socioecological theory, we propose that, beyond epilepsy and its comorbidity, objective and subjective child- and family-level factors act directly or as moderators or mediators that together with the objective functioning of mind and body help shape a child’s outcomes, including their HRQOL.» (p. 39-40)
«Our cohort represents children with epilepsy ages 8-15 years without autism or severe cognitive impairment and their caregivers from across Canada (both English- and French-speaking), a country with a universal health care system. The age range and inclusion criteria were chosen in order to apply child and youth self-reporting outcomes measures.» (p. 45)
Type de traitement des données :
«Over the past 2 decades, our group has been studying the concepts of HRQOL and ways to measure it empirically. This work has provided us with an opportunity to capture and better understand the experiential aspects of childhood epilepsy. The current study, with its longitudinal perspective and comprehensive inclusion of child and parent/family factors, is unique in terms of its conception and scope. It promises to provide a new depth and breadth of understanding about dimensions of childhood epilepsy. The rigorous design addresses many issues not previously considered in the field. By conducting this study, we will identify variables that are empirically associated with outcomes in CYWE as well as their relative importance over time. We also expect to identify moderating and mediating factors, including those potentially amenable to intervention. These findings will help clinicians to identify promising variables for both targeted and tailored future intervention studies. This in turn will better enable people to recognize and act on opportunities for primary and secondary prevention of the consequences of childhood epilepsy in order to manage childhood epilepsy more effectively and holistically. This project is significantly different from recent longitudinal studies modeling parent ratings of their child’s health over time.» (p. 44)