Children with epilepsy often face complex psychosocial consequences that are not fully captured by existing patient-reported outcome (PRO) measures. The Neurology Quality of Life Measurement System “Neuro-QoL” was developed to provide a set of common PRO measures that address issues important to people with neurologic disorders. This paper reports Neuro-QoL (anxiety, depression, interaction with peers, fatigue, pain, cognitive function, stigma, and upper and lower extremity functions) validation in children with epilepsy.
Patients (aged 10–18 years) diagnosed with epilepsy completed Neuro-QoL and legacy measures at time 1 (initial study visit) and 6-month follow-up. Internal consistency reliability was also evaluated. Concurrent validity was assessed by comparing Neuro-QoL measures with more established “legacy” measures of the same concepts. Clinical validity was evaluated by comparing mean Neuro-QoL scores of patients grouped by clinical anchors such as disease severity. Responsiveness of the Neuro-QoL from time 1 (initial study visit) to 6 months was evaluated using self-reported change as the primary anchor.
Sixty-one patients (mean age = 13.4 years; 62.3% male, 75.9% white) participated. Most patients (64.2%) had been seizure-free in the 3 months prior to participation, and seizure frequency was otherwise described as follows: 17.8% daily, 13.3% weekly, 35.6% monthly, and 33.3% yearly. All patients were taking antiepileptic drugs. Patients reported better function/less symptoms compared to the reference groups. Internal consistency (alpha) coefficients ranged from 0.76 to 0.87. Patients with different seizure frequencies differed on anxiety (p < .01) and cognitive function (p < .05). Compared to patients on polytherapy, those on monotherapy had better upper extremity scores (p < .05). Compared to those with localized seizures, those experiencing generalized seizures reported worse stigma (p < .05). Depression, anxiety, lower extremity, fatigue, pain, interaction with peers, and stigma also significantly discriminated patients with different levels of quality of life (p ≤ .05). All Neuro-QoL measures were significantly correlated with other measures assessing similar domains. Stigma was related to self-reported change in several areas of functioning but in sometimes unexpected directions.
The Neurology Quality of Life Measurement System is a valid and reliable assessment tool for children with epilepsy and can be used in research and clinical settings.
Source: Epilepsy and Behavior, 46, 209–214.
Author: Lai, J.-S., Nowinski, C.J., Zelko, F., Wortman, K., Burns, J., Nordli, D.R., & Cella, D. (2015).https://www.epilepsybehavior.com/article/S1525-5050(15)00098-0/fulltext