Pediatric Epilepsy Learning Healthcare System Quality of Life Prompt Validated


Investigators concluded that the prompt was ‘well-suited’ for use in clinical care, but additional research is needed to better understand the association between PELHS-QOL-2-Medications and race.

Pooja D. Shah, MD, resident physician, Ann & Robert H. Lurie Children’s Hospital of Chicago

Pooja D. Shah, MD

The Pediatric Epilepsy Learning Healthcare System Quality of Life (PELHS-QOL-2), a novel 2-item health-related quality of life (HRQOL) prompt for children with epilepsy, was validated in a recent multicenter cross-sectional study, with investigators concluding the prompt is suitable for use in the clinical setting.1 

The final study sample included a total of 154 caregivers of children with epilepsy, all of whom were English speakers and had a mean age of 9.7 years (range, 0.5-18.0). Forty-nine percent of respondents were women and 70% were White. Investigators, led by Pooja D. Shah, MD, resident physician, Ann & Robert H. Lurie Children’s Hospital of Chicago, found that the PELHS-QOL-2 correlated with the 4 comparator instruments, the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55; caregiver report, ages 4-28 years); the Pediatric Epilepsy Side Effects Questionnaire (PESQ; caregiver report, ages 2-25 years); the G-QOLCE (caregiver report, ages 4-18 years); and the GASE (clinician report, ages 4-12 years).

Investigators observed medium to large correlations between the PELHS-QOL-2 and the QOLCE-55 (n = 132; ρ = .55; P <.0001), and the GASE (n = 144; ρ = .52, P <.0001), and a large correlation between the PELHS-QOL-Medications and PESQ (n = 118; ρ = –.56; P <.0001). PELHS-QOL-Seizures was significantly associated with all subscores of the QOLCE-55, and PELHS-QOL-Medication was significantly associated with all PESQ subscores, excluding Weight.

After quantitative and qualitative analyses, investigators concluded the prompt met 7 of 8 design criteria, as it was understandable, actionable, trackable, distinct, meaningful, anchored and clear, but lacked in terms of feasibility. The bivariate and multivariate analysis suggest the PELHS-QOL-2 has “good” construct validity and validity generalization, while design criteria assessment indicated the prompt has “good” content validity and “adequate” clinical utility.

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The PELHS-QOL-2 was further found to be significantly associated with known drivers of quality of life in children with epilepsy (P <.05) and, in the multivariate model, predicted QOLCE-55 scores (adjusted R2 = .54). Neither item on the PELHS-QOL-2 was associated with age, sex, ethnicity, or the setting or location of data collection; PEL-QOL-2-Medications was significant associated with race, as more caregivers of White children responded “every day” to the item when compared with caregivers of non-White children.

“Given the abundance of epilepsy-specific HRQOL instruments, it falls upon pediatric epilepsy providers to decide which measure to administer in practice,” Shah et al wrote. “When deciding, clinicians might identify the HRQOL domains of interest to them and their patient population, consider logistics of instrument administration in clinical practice, and review the literature to select their ideal measure.”

Investigators established validity generalization via bivariate comparisons with demographic and clinical information, and content validity and clinical utility were determined through an assessment of how well the PELHS-QOL-2 met the 8 design criteria for an HRQOL prompt, which was established by a multistakeholder group of experts. There were several limitations to the study, primarily the lack of formal methodology in the development of the prompt, which are traditionally used to prevent potential bias. The incomplete inclusion of known driver of HRQOL also limited construct validity, investigators said.

1. Shah PD, Yun M, Wu A. Pediatric Epilepsy Learning Healthcare System Quality of Life (PELHS-QOL-2): A novel health-related quality of life prompt for children with epilepsy. Epilepsia. Published online December 31, 2021. doi:10.1111/epi.17156
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