Summary
Objective
To examine the influence of parent and family general and epilepsy-related stress on longitudinal generic and epilepsy-specific HRQOL for children with new-onset epilepsy, controlling for demographic characteristics, disease factors, and antiepileptic drug adherence.
Methods
This prospective, longitudinal study included 124 children with new-onset epilepsy (mean age=7.2 years, SD=2.9 years). Parents completed questionnaires on parenting stress, perceived stigma, fears and concerns, and HRQOL at 1, 13, and 25-months post-diagnosis. Adherence to antiepileptic medication was assessed using electronic monitors. A medical chart review was conducted at each visit to obtain seizure and side effect data.
Results
Higher levels of general and epilepsy-specific parent and family stress, fears and concerns, and perceived stigma negatively impacted child generic and epilepsy-specific HRQOL, above and beyond disease and demographic factors. General parenting and family stress impacted child generic and epilepsy-specific HRQOL more in the first year of disease management than at 2 years post-diagnosis. Higher fears and concerns predicted higher epilepsy-specific HRQOL at 13 months post-diagnosis, whereas 2 years post-diagnosis, higher fears and concerns predicted lower epilepsy-specific HRQOL. Several demographic (i.e., age) and disease-related variables (i.e., side effects, AED adherence) influenced child generic and epilepsy-specific HRQOL. While some findings were consistent across generic and epilepsy-specific HRQOL measures, others were unique.
Significance
Modifiable parent factors (i.e., general and disease-specific parent and family stress, perceived stigma) impact HRQOL for children with new-onset epilepsy differently over the first two years post-diagnosis. Psychosocial interventions to improve HRQOL within the first year post-diagnosis should address parenting and family stress, overall coping, and anticipatory guidance on managing epilepsy. Interventions targeting adherence, perceived stigma, and fears and concerns could improve HRQOL. Promoting parent management of stress, fears/concerns, and perceived stigma may lead to improved child HRQOL outcomes.