Epilepsy and proxy‐reported health‐related quality of life in children and young people with non‐ambulatory cerebral palsy

Abstract

Epilepsy, a disorder of recurrent seizures, negatively impacts health-related quality of life (HRQoL) and is a risk factor for early death. 1 Epilepsy occurs in 30% to 50% of individuals with cerebral palsy (CP), a movement disorder resulting from non-progressive injury to the developing brain with a high incidence of comorbid epilepsy. 2 Together, epilepsy and CP impact an estimated 300 000 individuals in the US. 3 Features of epilepsy and CP alter HRQoL in affected persons and their caregivers. 1 Differences in HRQoL related to epilepsy vary based on perceived seizure control, duration of epilepsy, mental health, and peer support. The degree to which each characteristic impacts resultant quality of life (QoL) is debated, and most studies are in persons with typical neurodevelopment. 1,4,5 Characteristics of CP, such as level of function, also impact QoL to varying degrees. Up to 35%

Establishing a psychosocial screening program in a high-volume pediatric epilepsy clinic using the PedsQL—Epilepsy module.

“…As part of a broader initiative to collect patient-reported outcomes, a series of screening forms were developed and distributed to patients and proxies utilizing the Welcome and MyChart utilities within the Epic electronic health record (EHR; Epic Systems Corp, Verona, Wisconsin, United States) prior to patient appointments. Branching logic questions targeted the PedsQL—epilepsy module to caregivers of ambulatory and verbal patients, while other tools (e.g., Caregivers Priorities and Child Health Index of Life with Disabilities (CPCHILD; Narayanan et al, 2006, Ostendorf et al, 2023) were distributed to caregivers of patients with other developmental characteristics. Specifically, the CP Child was given to caregivers of patients who were nonverbal and/or nonambulatory.…”