Validity of the Neurology Quality-of-Life (Neuro-QoL) measurement system in adult epilepsy

David Victorson*, Jose E. Cavazos, Gregory L. Holmes, Anthony T. Reder, Valerie Wojna, Cindy Nowinski, Deborah Miller, Sarah Buono, Allison Mueller, Claudia Moy, David Cella

*Corresponding author for this work

Research output: Contribution to journalArticle

18 Citations (Scopus)

Abstract

Epilepsy is a chronic neurological disorder that results in recurring seizures and can have a significant adverse effect on health-related quality of life (HRQL). The Neuro-QoL measurement initiative is an NINDS-funded system of patient-reported outcome measures for neurology clinical research, which was designed to provide a precise and standardized way to measure HRQL in epilepsy and other neurological disorders. Using mixed-method and item response theory-based approaches, we developed generic item banks and targeted scales for adults and children with major neurological disorders. This paper provides empirical results from a clinical validation study with a sample of adults diagnosed with epilepsy. One hundred twenty-one people diagnosed with epilepsy participated, the majority of which were male (62%) and Caucasian (95%), with a mean age of 47.3 (SD. = 16.9). Baseline assessments included Neuro-QoL short forms and general and external validity measures. The Neuro-QoL short forms that are not typically found in other epilepsy-specific HRQL instruments include Stigma, Sleep Disturbance, Emotional and Behavioral Dyscontrol, and Positive Affect and Well-Being. Neurology Quality-of-Life short forms demonstrated adequate reliability (internal consistency range. = .86-96; test-retest range. = .57-.89). Pearson correlations (p. <. .01) between Neuro-QoL forms of emotional distress (anxiety, depression, stigma) and the QOLIE-31 Emotional Well-Being subscale were in the moderate-to-strong range (r's. = .66, .71 and .53, respectively), as were relations with the PROMIS Global Mental Health subscale (r's. = .59, .74 and .52, respectively). Moderate correlations were observed between Neuro-QoL Social Role Performance and Satisfaction and the QOLIE-31 Social Function (r's. = .58 and .52, respectively). In measuring aspects of physical function, the Neuro-QoL Mobility and Upper Extremity forms demonstrated moderate associations with the PROMIS Global Physical Function subscale (r's. = .60 and .61, respectively). Neuro-QoL measures of perceived cognitive function (executive function and general concerns) produced moderate-to-strong correlations with the QOLIE-31 Cognition subscale (r's. = .65 and .75, respectively) and moderate relations with the Liverpool Adverse Events Profile (r's. = .51 and .69, respectively). Finally, the Neuro-QoL Fatigue measure demonstrated moderate associations with the QOLIE-31 Energy/Fatigue subscale (r. = -. .65), Liverpool Adverse Events Profile (r. = .69), and the Liverpool Seizure Severity Scale (r. = .50). Five Neuro-QoL short forms demonstrated statistically significant responsiveness to change at 5-7. months, including Fatigue, Sleep Disturbance, Depression, Positive Affect and Well-Being, and Emotional and Behavioral Dyscontrol. Overall, Neuro-QoL instruments showed good evidence for internal consistency, test-retest reliability, convergent validity, and responsiveness to change over several months. These results support the validity of Neuro-QoL to measure HRQL in adults with epilepsy.

Original languageEnglish (US)
Pages (from-to)77-84
Number of pages8
JournalEpilepsy and Behavior
Volume31
DOIs
StatePublished - Feb 1 2014

Fingerprint

Neurology
Epilepsy
Quality of Life
Nervous System Diseases
Reproducibility of Results
Fatigue
Cognition
Sleep
Seizures
National Institute of Neurological Disorders and Stroke
Depression
Validation Studies
Executive Function
Upper Extremity

Keywords

  • Epilepsy
  • Measurement
  • Neuro-QoL
  • Psychometrics
  • Quality of life
  • Validation

ASJC Scopus subject areas

  • Neurology
  • Clinical Neurology
  • Behavioral Neuroscience

Cite this

Victorson, David ; Cavazos, Jose E. ; Holmes, Gregory L. ; Reder, Anthony T. ; Wojna, Valerie ; Nowinski, Cindy ; Miller, Deborah ; Buono, Sarah ; Mueller, Allison ; Moy, Claudia ; Cella, David. / Validity of the Neurology Quality-of-Life (Neuro-QoL) measurement system in adult epilepsy. In: Epilepsy and Behavior. 2014 ; Vol. 31. pp. 77-84.
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Validity of the Neurology Quality-of-Life (Neuro-QoL) measurement system in adult epilepsy. / Victorson, David; Cavazos, Jose E.; Holmes, Gregory L.; Reder, Anthony T.; Wojna, Valerie; Nowinski, Cindy; Miller, Deborah; Buono, Sarah; Mueller, Allison; Moy, Claudia; Cella, David.

In: Epilepsy and Behavior, Vol. 31, 01.02.2014, p. 77-84.

Research output: Contribution to journalArticle

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T1 - Validity of the Neurology Quality-of-Life (Neuro-QoL) measurement system in adult epilepsy

AU - Victorson, David

AU - Cavazos, Jose E.

AU - Holmes, Gregory L.

AU - Reder, Anthony T.

AU - Wojna, Valerie

AU - Nowinski, Cindy

AU - Miller, Deborah

AU - Buono, Sarah

AU - Mueller, Allison

AU - Moy, Claudia

AU - Cella, David

PY - 2014/2/1

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N2 - Epilepsy is a chronic neurological disorder that results in recurring seizures and can have a significant adverse effect on health-related quality of life (HRQL). The Neuro-QoL measurement initiative is an NINDS-funded system of patient-reported outcome measures for neurology clinical research, which was designed to provide a precise and standardized way to measure HRQL in epilepsy and other neurological disorders. Using mixed-method and item response theory-based approaches, we developed generic item banks and targeted scales for adults and children with major neurological disorders. This paper provides empirical results from a clinical validation study with a sample of adults diagnosed with epilepsy. One hundred twenty-one people diagnosed with epilepsy participated, the majority of which were male (62%) and Caucasian (95%), with a mean age of 47.3 (SD. = 16.9). Baseline assessments included Neuro-QoL short forms and general and external validity measures. The Neuro-QoL short forms that are not typically found in other epilepsy-specific HRQL instruments include Stigma, Sleep Disturbance, Emotional and Behavioral Dyscontrol, and Positive Affect and Well-Being. Neurology Quality-of-Life short forms demonstrated adequate reliability (internal consistency range. = .86-96; test-retest range. = .57-.89). Pearson correlations (p. <. .01) between Neuro-QoL forms of emotional distress (anxiety, depression, stigma) and the QOLIE-31 Emotional Well-Being subscale were in the moderate-to-strong range (r's. = .66, .71 and .53, respectively), as were relations with the PROMIS Global Mental Health subscale (r's. = .59, .74 and .52, respectively). Moderate correlations were observed between Neuro-QoL Social Role Performance and Satisfaction and the QOLIE-31 Social Function (r's. = .58 and .52, respectively). In measuring aspects of physical function, the Neuro-QoL Mobility and Upper Extremity forms demonstrated moderate associations with the PROMIS Global Physical Function subscale (r's. = .60 and .61, respectively). Neuro-QoL measures of perceived cognitive function (executive function and general concerns) produced moderate-to-strong correlations with the QOLIE-31 Cognition subscale (r's. = .65 and .75, respectively) and moderate relations with the Liverpool Adverse Events Profile (r's. = .51 and .69, respectively). Finally, the Neuro-QoL Fatigue measure demonstrated moderate associations with the QOLIE-31 Energy/Fatigue subscale (r. = -. .65), Liverpool Adverse Events Profile (r. = .69), and the Liverpool Seizure Severity Scale (r. = .50). Five Neuro-QoL short forms demonstrated statistically significant responsiveness to change at 5-7. months, including Fatigue, Sleep Disturbance, Depression, Positive Affect and Well-Being, and Emotional and Behavioral Dyscontrol. Overall, Neuro-QoL instruments showed good evidence for internal consistency, test-retest reliability, convergent validity, and responsiveness to change over several months. These results support the validity of Neuro-QoL to measure HRQL in adults with epilepsy.

AB - Epilepsy is a chronic neurological disorder that results in recurring seizures and can have a significant adverse effect on health-related quality of life (HRQL). The Neuro-QoL measurement initiative is an NINDS-funded system of patient-reported outcome measures for neurology clinical research, which was designed to provide a precise and standardized way to measure HRQL in epilepsy and other neurological disorders. Using mixed-method and item response theory-based approaches, we developed generic item banks and targeted scales for adults and children with major neurological disorders. This paper provides empirical results from a clinical validation study with a sample of adults diagnosed with epilepsy. One hundred twenty-one people diagnosed with epilepsy participated, the majority of which were male (62%) and Caucasian (95%), with a mean age of 47.3 (SD. = 16.9). Baseline assessments included Neuro-QoL short forms and general and external validity measures. The Neuro-QoL short forms that are not typically found in other epilepsy-specific HRQL instruments include Stigma, Sleep Disturbance, Emotional and Behavioral Dyscontrol, and Positive Affect and Well-Being. Neurology Quality-of-Life short forms demonstrated adequate reliability (internal consistency range. = .86-96; test-retest range. = .57-.89). Pearson correlations (p. <. .01) between Neuro-QoL forms of emotional distress (anxiety, depression, stigma) and the QOLIE-31 Emotional Well-Being subscale were in the moderate-to-strong range (r's. = .66, .71 and .53, respectively), as were relations with the PROMIS Global Mental Health subscale (r's. = .59, .74 and .52, respectively). Moderate correlations were observed between Neuro-QoL Social Role Performance and Satisfaction and the QOLIE-31 Social Function (r's. = .58 and .52, respectively). In measuring aspects of physical function, the Neuro-QoL Mobility and Upper Extremity forms demonstrated moderate associations with the PROMIS Global Physical Function subscale (r's. = .60 and .61, respectively). Neuro-QoL measures of perceived cognitive function (executive function and general concerns) produced moderate-to-strong correlations with the QOLIE-31 Cognition subscale (r's. = .65 and .75, respectively) and moderate relations with the Liverpool Adverse Events Profile (r's. = .51 and .69, respectively). Finally, the Neuro-QoL Fatigue measure demonstrated moderate associations with the QOLIE-31 Energy/Fatigue subscale (r. = -. .65), Liverpool Adverse Events Profile (r. = .69), and the Liverpool Seizure Severity Scale (r. = .50). Five Neuro-QoL short forms demonstrated statistically significant responsiveness to change at 5-7. months, including Fatigue, Sleep Disturbance, Depression, Positive Affect and Well-Being, and Emotional and Behavioral Dyscontrol. Overall, Neuro-QoL instruments showed good evidence for internal consistency, test-retest reliability, convergent validity, and responsiveness to change over several months. These results support the validity of Neuro-QoL to measure HRQL in adults with epilepsy.

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KW - Psychometrics

KW - Quality of life

KW - Validation

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