Validation of the Neuro-QoL measurement system in children with epilepsy

Jin-Shei Lai*, Cindy J Nowinski, Frank A Zelko, Katy Wortman, James Burns, Douglas R. Nordli, David Cella

*Corresponding author for this work

Research output: Contribution to journalArticle

6 Citations (Scopus)

Abstract

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 10-18. 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. Results: 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. 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.

Original languageEnglish (US)
Pages (from-to)209-214
Number of pages6
JournalEpilepsy and Behavior
Volume46
DOIs
StatePublished - May 1 2015

Fingerprint

Epilepsy
Seizures
Anxiety
Quality of Life
Neurology
Cognition
Fatigue
Lower Extremity
Depression
Pain
Nervous System Diseases
Upper Extremity
Anticonvulsants
Research

Keywords

  • Children
  • Epilepsy
  • Measurement
  • Neuro-QoL
  • Quality of life

ASJC Scopus subject areas

  • Neurology
  • Clinical Neurology
  • Behavioral Neuroscience

Cite this

@article{e777fa23c04a4f909b50a13d69294264,
title = "Validation of the Neuro-QoL measurement system in children with epilepsy",
abstract = "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 10-18. 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. Results: 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. 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.",
keywords = "Children, Epilepsy, Measurement, Neuro-QoL, Quality of life",
author = "Jin-Shei Lai and Nowinski, {Cindy J} and Zelko, {Frank A} and Katy Wortman and James Burns and Nordli, {Douglas R.} and David Cella",
year = "2015",
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language = "English (US)",
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pages = "209--214",
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Validation of the Neuro-QoL measurement system in children with epilepsy. / Lai, Jin-Shei; Nowinski, Cindy J; Zelko, Frank A; Wortman, Katy; Burns, James; Nordli, Douglas R.; Cella, David.

In: Epilepsy and Behavior, Vol. 46, 01.05.2015, p. 209-214.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Validation of the Neuro-QoL measurement system in children with epilepsy

AU - Lai, Jin-Shei

AU - Nowinski, Cindy J

AU - Zelko, Frank A

AU - Wortman, Katy

AU - Burns, James

AU - Nordli, Douglas R.

AU - Cella, David

PY - 2015/5/1

Y1 - 2015/5/1

N2 - 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 10-18. 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. Results: 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. 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.

AB - 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 10-18. 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. Results: 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. 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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