Measuring the impact of epilepsy on families

Objective: Caring for a child with illness or a child with disability impacts family in various ways. The ability to assess the impact of this care on families is one way to proactively provide the necessary support and resources for impacted families. Accordingly, the goal of the current study was to assess the impact of pediatric epilepsy on individual families in a comprehensive epilepsy clinic using a slightly modified version of the Impact on Families Scale (IFS).

Methods: Families of patients with epilepsy completed the IFS up to three times. The IFS score and the six categories (i.e., total impact, financial impact, general impact, family/social impact, coping, and sibling impact) were assessed using Student's two sample t-test to determine the differences between binary groups and Pearson's correlation to assess the associations with continuous variables. Linear regression modeling was used to develop a model to predict IFS score.

Results: Three hundred and forty-one patients completed the scale at one time point, 314 at two time points, and 61 at three time points. The overall impact of epilepsy on families was 109 (95% confidence interval (CI): 106-112) at time point 1, 111 (95% CI: 108-114) at time point 2, and 112 (95% CI: 105-119) at time point 3. There was no statistical difference in IFS score among the three time points. There were no associations with age or gender. Multivariable modeling using stepwise regression indicated that treatment resistance and seizure-free status were associated with IFS score. No interaction effects were identified.

Conclusions: Findings from the current study suggest that the impact of epilepsy is highest for families that have children with active seizures at the time of their clinical visit and for those with children having treatment-resistant epilepsy. Although intuitive, this is the first study, to our knowledge, that has empirically verified these findings.