Introduction

Our study quantifies direct, mediating and moderating influences of various epilepsy, co-morbid, child, and family variables on children’s health and well-being over the early life-course. We will present hypotheses and methodology of this prospective longitudinal study based on a conceptual framework for understanding health outcomes.

Methods

The population is children with epilepsy 8-14 years old and their caregivers from across Canada. Children, caregivers, and health professionals complete 17 measures at five visits over 28 months. The measures are all based on content, the source of the items, psychometric properties, and provision 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. We use hierarchical linear modeling to measure change over time.

Results

Demographics: among 506 families: mean child age 11.4-years; epilepsy onset 6.2 years; epilepsy duration 5.2 years; and mean IQ 99.4.  Characteristics: 71% take a single medication; 46% have experienced medication failure; 29% have been seizure free, 31% had low and 37% high seizure severity over the previous year.

Discussion

Discussion of these perspectives will help researchers consider their methodology and encourage longitudinal studies. Furthermore, our experience may help clinicians identify what to look for when evaluating outcomes research. We believe that the next generation of research to understand life-course effects on the lives of children and youth with chronic conditions and their families must occur over real time.