Pediatric Epilepsy Learning Healthcare System Quality of Life (PELHS‐QOL‐2): A novel health‐related quality of life prompt for children with epilepsy

Objective Pediatric epilepsy is often associated with diminished health‐related quality of life (HRQOL). Our aim was to establish the validity of the Pediatric Epilepsy Learning Healthcare System Quality of Life (PELHS‐QOL‐2) questions, a novel two‐item HRQOL prompt for children with epilepsy, primarily for use in clinical care. Methods We performed a multicenter cross‐sectional study to validate the PELHS‐QOL‐2. Construct validity was established through bivariate comparisons with four comparator measures and known drivers of quality of life in children with epilepsy, as well as by creating an a priori multivariable model to predict the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE‐55). Validity generalization was established through bivariate comparisons with demographic and clinical information. Content validity and clinical utility were established by assessing how well the PELHS‐QOL‐2 met eight design criteria for an HRQOL prompt established by a multistakeholder group of experts. Results The final participant sample included 154 English‐speaking caregivers of children with epilepsy (mean age = 9.7 years, range = .5–18, 49% female, 70% White). The PELHS‐QOL‐2 correlated with the four comparator instruments (ρ = .44–.56), was significantly associated with several known drivers of quality of life in children with epilepsy (p