Abstracts

Rationale: Children with epilepsy are less physically active and socially involved than their peers, which in turn can negatively affect children's development and health-related quality of life. As gatekeepers, parents of children with epilepsy may become overprotective and thus restrict the involvement of these children in activities. The objective of this research was to explore whether parents represent a barrier to children's physical and social activities, by examining the association between child and family factors and parents' perceptions of activity restrictions associated with epilepsy. Methods: Data were obtained from the Health Related Quality of Life in Children with Epilepsy Study (HERQULES), a multi-centre longitudinal study of children 4-12 years old with new-onset epilepsy followed for 24 months. Activity restrictions, family functioning, resources, and demands, and parental worry and concern were reported by parents. Children's seizure frequency, type, severity and timing, medication use, and co-morbid conditions were reported by neurologists, at baseline, 6, 12, and 24 months. The Physical Restrictions subscale of the Quality of Life in Childhood Epilepsy (QOLCE) questionnaire assessed parent perceived activity restrictions. The Family Inventory of Resources for Management (FIRM) measured family resources; the Family Inventory of Life Events and Changes (FILE) measured family demands; the Family Adaptability, Partnership, Growth, Affection & Resolve (APGAR) measured family functioning; and the Parental Impact-Emotional subscale of the Child Health Questionnaire (CHQ) measured parental worry and concern. The Global Assessment of Severity of Epilepsy (GASE) scale was used to assess epilepsy severity. Linear mixed models were used to model the relationships among child and family factors and parents' perceptions of activity restrictions. Results: Baseline questionnaires were completed by 374 parents (response rate 82%) and by 282 at 24 months. There was a significant non-linear change in activity restriction scores from baseline to 24 months, on average (Time squared in weeks = -0.0017 (0.00026)). Over time parents perceived fewer epilepsy-associated activity restrictions (mean (SD)): 62.9(18.5), 68.6(19.2), 73.5(18.4), and 74.1(18.6)). The improvement in activity restrictions was significant from baseline to 6 to 12 months, but not from 12 to 24 months post-diagnosis. Results from fitting the mixed model show that child factors- (age, seizure frequency, epilepsy severity and presence of a co-morbid diagnosis), and family factors- (annual household income, caregiver age, parental worry and concern, and family resources) are significantly associated with perceived activity restrictions (p<0.05). Conclusions: The significant association of family factors with parents' perceptions of activity restrictions associated with epilepsy in children suggests that there is an opportunity through education and discussion to remove some level of unnecessary activity restriction soon after children are diagnosed.