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Validation of the Neuro-QoL measurement system in children with epilepsy
Jin-Shei Lai1, Cindy J Nowinski2, Frank Zelko3
1Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA; Department of Pediatrics, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA.
Insights
The Neurology Quality of Life Measurement System (Neuro-QoL) is a valid and reliable tool for assessing children with epilepsy. It effectively measures psychosocial outcomes like anxiety, depression, and stigma in pediatric epilepsy patients.
Area of Science:
- Neurology
- Psychosocial Health
- Pediatric Health
Background:
- Epilepsy in children presents complex psychosocial challenges.
- Existing patient-reported outcome (PRO) measures may not fully capture these consequences.
- The Neurology Quality of Life Measurement System (Neuro-QoL) was developed to address this gap.
Purpose of the Study:
- To validate the Neuro-QoL measures for children with epilepsy.
- To assess the reliability and validity of Neuro-QoL domains including anxiety, depression, peer interaction, fatigue, pain, cognitive function, stigma, and extremity functions.
- To evaluate the utility of Neuro-QoL in research and clinical settings for pediatric epilepsy.
Main Methods:
- A cohort of 61 children (aged 10-18) with epilepsy completed Neuro-QoL and legacy measures at baseline and 6-month follow-up.
- Internal consistency reliability was assessed using Cronbach's alpha.
- Concurrent validity was established by comparing Neuro-QoL with established measures.
- Clinical validity was examined by grouping patients based on clinical anchors like disease severity.
- Responsiveness was evaluated using self-reported change.
Main Results:
- Neuro-QoL demonstrated good internal consistency (alpha coefficients 0.76-0.87).
- The measures showed significant correlations with legacy instruments, supporting concurrent validity.
- Patients with different seizure frequencies, treatment types (monotherapy vs. polytherapy), and seizure types (localized vs. generalized) showed significant differences in various Neuro-QoL domains, including anxiety, cognitive function, upper extremity function, and stigma.
- The tool effectively discriminated between patients with varying quality of life levels.
Conclusions:
- The Neuro-QoL is a valid and reliable assessment tool for children with epilepsy.
- It can be effectively utilized in both research and clinical practice to evaluate psychosocial well-being.
- Neuro-QoL provides valuable insights into the complex outcomes experienced by pediatric epilepsy patients.
Objective:
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.
Method:
Patients (aged 10-18years) 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 6months was evaluated using self-reported change as the primary anchor.
Results:
Sixty-one patients (mean age=13.4years; 62.3% male, 75.9% white) participated. Most patients (64.2%) had been seizure-free in the 3months 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.
Significance:
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.
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