Family resources moderate the relationship between seizure control and health‐related quality of life in children with drug‐resistant epilepsy

Abstract

Objective: Pediatric drug-resistant epilepsy (DRE) is associated with poor health-related quality of life (HRQOL). Achieving seizure control, however, does not improve HRQOL in all children. This study sought to evaluate whether (1) baseline caregiver and family factors are associated with child HRQOL at 1-year follow-up over and above epilepsy characteristics, treatment, and seizure outcome; and (2) baseline family factors moderate the association between seizure outcome and child HRQOL at 1-year follow-up. Methods: This multicenter longitudinal cohort study recruited 152 children with DRE who were being evaluated for surgical candidacy. Child HRQOL was rated by caregivers using the Quality of Life in Childhood Epilepsy Questionnaire at baseline and 1-year follow-up. Additional data collected at baseline included child epilepsy characteristics, caregiver demographics, caregiver mood, and family environment. Results: Seizure freedom was achieved in 68% and 28% of patients 1 year after surgery and medical treatment, respectively. Caregiver and family factors were not associated with higher child HRQOL at follow-up after accounting for epilepsy characteristics, treatment, seizure outcome, and baseline child HRQOL, F 11, 131 = 1.34,

Quality of life of children with residual seizures after epileptic resection surgery

“…Clinicians need to strike a proper balance between maximizing seizure control and improving the patient's quality of life by considering the potential for permanent neurological function deficits from resection surgery and the potential for drug overload to affect the child's intellectual development. The impact of epilepsy on QoL is closely related to seizure control, subjective feelings, and family ( 37 ), and the treatment for epilepsy requires not only seizure control but also the integration of clinicians, caregivers, and social support based on the anti-epileptic drug (AED) treatment to improve the patient's QoL.…”

Parent Mental Health and Family Coping over Two Years after the Birth of a Child with Acute Neonatal Seizures

“…The differential impact of the child’s condition on family well-being over time for children who developed epilepsy is consistent with qualitative research studies that included parents of young children with epilepsy that described the chronic and unpredictable acute nature of the condition and chronic trauma for families [ 23 , 24 ]. Addressing parent mental health concerns early is critically important to the future development, behavior and well-being of children with neurological conditions [ 21 , 25 , 26 , 27 ].…”

Epilepsy surgery for children and adolescents: evidence-based but underused

“…Regarding contributors to improvements in HRQoL after surgery, the focus has predominantly been on seizure freedom which has consistently been shown to be associated with better HRQoL 79 . Additionally, improvements in HRQoL may be reduced for children who come from families with limited resources 83 . Few studies have considered behavioural-emotional functioning.…”