Research Fellow Hospital for Sick Children Toronto, Ontario, Canada
Rationale: Caring for a child with drug-resistant epilepsy (DRE) is associated with poorer caregiver and family functioning, than is caring for a child with well controlled seizures. Improving seizure control through surgery is associated with improved child quality of life, and we hypothesize that it may positively impact psychosocial functioning of the family. We evaluated longitudinal changes in caregiver mood and family relationships across the first year following resective surgery. Methods: This multicenter cohort study involved 177 caregivers of children with DRE aged four to 18 years; 63 surgical and 114 non-surgical. Caregivers completed measures of depression (Quick Inventory of Depressive Symptomatology), anxiety (Generalized Anxiety Disorder 7-item scale), and satisfaction with family relationships (Family Adaptability, Partnership, Growth, Affective, and Resolve scale) at baseline, six months, and one year. Additional baseline data included child, caregiver, and family demographic and clinical factors as well as family environment (demands and resources). Results: At one year, 64% and 27% of surgical and non-surgical patients were seizure-free, respectively. Linear mixed-effects models found a reduction in caregiver depression (b=-0.85, p=.004) and anxiety (b=-1.09, p=.003), but not family satisfaction (b=0.18, p=.31) over time. There was no effect of treatment. When seizure outcome was added to the model, seizure freedom was associated with fewer depressive symptoms (b=-1.15, p=.005) and greater family satisfaction (b=0.65, p=.006), but not anxiety (b=-0.41, p=.42). A greater proportion of caregivers of patients who achieved seizure-freedom (32%) versus continued seizures (18%) reported clinically meaningful improvement in depression at 1-year (p=.03). Lower baseline depression (β=0.42, p<.001), greater family resources (β=-0.18, p=.04), and male caregiver (β=0.15, p=.02) predicted lower caregiver depression, while lower baseline anxiety (β=0.47, p<.001), greater family resources (β=-0.24, p=.01), and higher education (β=-0.13, p=.04) predicted lower caregiver anxiety at 1-year. Baseline functioning was the only predictor of family relationships at 1-year (β=0.49, p<.001). Conclusions: Caregivers of children who achieve seizure freedom, irrespective of treatment type, report fewer depressive symptoms and greater satisfaction with family relationships. Baseline functioning was the strongest predictor of outcome; however, caregivers of families with fewer resources were also at risk of poor outcomes. These results are clinically relevant in terms of highlighting the importance of assessing the family system at the time of the child’s evaluation for surgical candidacy and identifying at-risk families in order to improve psychosocial outcomes for children with DRE and their families. Funding: Please list any funding that was received in support of this abstract.: This study was funded by a grant from the Canadian Institute of Health Research to MLS and EW. NLP was supported by funding from the SickKids Foundation and the Savoy Foundation Postdoctoral Fellowship.