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

Pooja D Shah; Michelle Yun; Alan Wu; Rachel A Arnesen; Margaret Storey; Max Sokoloff; Renée A Shellhaas; Cassie Turnage; Erika J Axeen; Howard P Goodkin; Anup D Patel; Evelynne Wentzel; Avani C Modi; Zachary M Grinspan

doi:10.1111/epi.17156

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

Epilepsia. 2022 Mar;63(3):672-685. doi: 10.1111/epi.17156. Epub 2021 Dec 31.

Authors

Pooja D Shah¹, Michelle Yun², Alan Wu³, Rachel A Arnesen¹, Margaret Storey⁴, Max Sokoloff⁵, Renée A Shellhaas⁶, Cassie Turnage⁷, Erika J Axeen⁸, Howard P Goodkin⁸, Anup D Patel⁹, Evelynne Wentzel⁹, Avani C Modi¹⁰, Zachary M Grinspan^{3

11}

Affiliations

¹ Weill Cornell Medicine, Weill Cornell Medical College, New York, New York, USA.
² Department of Pediatrics, Phoenix Children's Hospital, Phoenix, Arizona, USA.
³ Department of Population Health Sciences, Weill Cornell Medicine, New York, New York, USA.
⁴ College of Liberal Arts and Social Sciences, DePaul University, Chicago, Illinois, USA.
⁵ Department of Pediatrics, Children's Hospital Los Angeles, Los Angeles, California, USA.
⁶ Department of Pediatrics, Michigan Medicine, Ann Arbor, Michigan, USA.
⁷ Department of Pediatrics, University of Utah Health, Salt Lake City, Utah, USA.
⁸ Department of Neurology, University of Virginia Children's Hospital, Charlottesville, Virginia, USA.
⁹ Department of Neurology, Nationwide Children's Hospital, Columbus, Ohio, USA.
¹⁰ Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
¹¹ Department of Pediatrics, Weill Cornell Medicine, New York, New York, USA.

PMID: 34971001
DOI: 10.1111/epi.17156

Abstract

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 < .05), and predicted QOLCE-55 scores in the multivariate model (adjusted R² = .54). The PELHS-QOL-2 item was not associated with the age, sex, and ethnicity of the children nor with the setting and location of data collection, although PELHS-QOL-Medications was significantly associated with race (worse for White race). Following both quantitative and qualitative analysis, the PELHS-QOL-2 met seven of eight design criteria.

Significance: The PELHS-QOL-2 is a valid HRQOL prompt and is well suited for use in clinical care as a mechanism to routinely initiate conversations with caregivers about quality of life in children with epilepsy. The association of PELHS-QOL-Medications with race merits further study.

Keywords: antiseizure medication; clinical care; comorbidities; pediatric; seizure.

Publication types

Multicenter Study

MeSH terms

Adolescent
Child
Child, Preschool
Cross-Sectional Studies
Epilepsy* / drug therapy
Female
Humans
Learning Health System*
Male
Quality of Life
Surveys and Questionnaires