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 language | English (US) |
|---|---|
| Pages (from-to) | 209-214 |
| Number of pages | 6 |
| Journal | Epilepsy and Behavior |
| Volume | 46 |
| DOIs | |
| State | Published - May 1 2015 |
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Keywords
- Children
- Epilepsy
- Measurement
- Neuro-QoL
- Quality of life
ASJC Scopus subject areas
- Neurology
- Clinical Neurology
- Behavioral Neuroscience
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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 journal › Article
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.
KW - Children
KW - Epilepsy
KW - Measurement
KW - Neuro-QoL
KW - Quality of life
UR - http://www.scopus.com/inward/record.url?scp=84937968708&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=84937968708&partnerID=8YFLogxK
U2 - 10.1016/j.yebeh.2015.02.038
DO - 10.1016/j.yebeh.2015.02.038
M3 - Article
C2 - 25862469
AN - SCOPUS:84937968708
VL - 46
SP - 209
EP - 214
JO - Epilepsy and Behavior
JF - Epilepsy and Behavior
SN - 1525-5050
ER -