Authors :
Presenting Author: Lu Zhang, PhD – Lurie Children's Hospital / Northwestern University Feinberg School of Medicine
Anup Patel, MD – Nationwide Children's Hospital; Marc Rosenman, MD – Lurie Children's Hospital; Tracy Dixon-Salazar, PhD – Lennox-Gastaut Syndrome Foundation; Sandi Lam, MD MBA – Lurie Children's Hospital
Rationale:
Costs of care in pediatric epilepsy are known to be considerable but remain incompletely quantified. Family economic status has been shown to impact health outcomes in children with special health care needs. With updated United States census survey data, we examine foregone family employment (FFE) because of a child's health condition in families affected by pediatric epilepsy.
Methods:
We conducted a secondary analysis from National Survey of Children's Health with updated data from the years 2020 and 2021. Respondents with children with epilepsy with employed adult family caregivers at the beginning of the survey period were included. The definition of FFE was any family member who reduced employment hours, took a leave of absence from work, or stopped work because of their child's health condition. Child, caregiver, and household characteristics were compared by reported status of FFE.
Results:
A total of 541 family respondents reported a child with epilepsy in the household during the survey time. Thirteen records were excluded due to missing values. A total of 26% (95%CI 22%-29%) of previously employed families with children with epilepsy in their household experienced foregone family employment. Multivariate analysis found that FFE correlated with higher severity of pediatric epilepsy, child’s female gender, more time spent arranging healthcare per week, and increasing hours of family-provided home medical care.
Conclusions:
One in four US families with children with epilepsy report foregone family employment. FFE is only part of a larger financial impact that has yet to be completely quantified. We highlight this area of socioeconomic burden of pediatric epilepsy to families as a call to action for further research as well as development of programs to address these gaps that can impact the health of these children and their communities overall.
Funding: PCORI RD-2020C2-20356