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Quality of Life in Neurological Disorders (Neuro-QOL) - Measurement System
Availability
For additional information and to obtain Neuro-QOL instruments, please visit:
 
Neuro-QoL is currently distributed through HealthMeasures. Free, administration- ready PDFs can be downloaded from the HealthMeasures.
 
See General Page for currently available Neuro-Qol Bank CDE Details.
Classification
Supplemental – Highly Recommended: Epilepsy (quality of life studies)
Short Description of Instrument
Neuro-QoL (Quality of Life in Neurological Disorders) is a set of health-related quality of life (HRQoL) measures for use with adults (18+) and children (ages 8-17) who have a neurological condition or disorder, including epilepsy. While Neuro- QoL has not been widely used in epilepsy, uptake is increasing.
 
Neuro-QoL development was funded by NINDS with the goal of providing a set of standard measures that could be used across a variety of neurological conditions and in both neurological clinical research and clinical practice. Neuro-QoL is appropriate for both within-disease and cross-disease comparisons. Recent work linking indivi2222dual Neuro-QoL instruments to generic measures included in the Patient Reported Outcomes Measurement Information System (PROMIS) also allows comparisons to non-neurological conditions.
 
Development utilized state-of-the art qualitative and quantitative methods (including item response theory [IRT]) consistent with FDA guidance regarding Patient Reported Outcomes. Domains (constructs) were selected and items refined based on patient, caregiver, and expert input. Most of the measures were constructed as item banks, which confers several advantages. The item banks enable assessment using either a variety of fixed-length short forms (SFs) or computer adaptive tests (CAT). CATs, computerized tests that select the most informative items to present based on the participant’s previous response, can shorten assessments while maintaining measurement precision. Any or all items within a bank can be used for assessment, with scores comparable no matter which item or subset of items are used.  Thus, users can create their own “custom” short forms that best meet their measurement needs.
 
The Neuro-QoL system assesses important domains (symptoms, concerns, and issues) of physical, mental and social health that are relevant across disorders (generic measures) along with instruments that assess areas most relevant for specific patient populations (targeted).
 
Neuro-QoL domains that are not typically found in epilepsy-specific HRQoL instruments include Stigma, Sleep Disturbance, Emotional and Behavioral Dyscontrol and Positive Affect & Wellbeing.
 
Time: Standard Neuro-QoL Short Forms are generally 8 items long. Neuro-QoL CATs are typically ~6 items. On average, adult respondents answer 5 questions and pediatric respondents answer 4 questions per minute.
Thus, it takes adults ~1 to 1.5 minutes and children ~1.5 to 2 minutes to complete Neuro-QoL measures, depending on which format they are administered in.
 
Other Important Notes: The Neuro-QOL is designed to be a common outcome variable across NINDS-sponsored clinical trials. It has been tested in large samples of individuals from both general and diverse, neurologically-impaired populations. Validation with stroke patients is underway.
Available translations. Neuro-QoL measures are available in English and Spanish. Individual measures have been translated into other languages. Available translations can be searched for here: http://www.healthmeasures.net/index.php?option=com_instruments&view=search&Itemid=977
Scoring
Neuro-QoL scores are on a T-score metric (mean = 50 and standard deviation = 10) with higher scores indicating more of what is being measured. Short forms can be hand scored using look-up tables. Short forms (standard or custom) and CATs can be automatically scored using one of the available data collection software systems or a free scoring service.
Psychometric Properties
Adult Neuro-QoL Short Forms
 
Reliability – internal consistency of individual instruments ranged from 0.86- 0.96. One week test-retest range = 0.57- 0.89.
 
Validity – Neuro-QoL measures correlated in expected directions (convergent and discriminant validity) with generic and epilepsy-specific (e.g., QOLIE-31) legacy measures. However, while correlated with other measures of self-reported cognition, Neuro-QoL cognition was not significantly associated with
performance-based measures of cognitive function. Neuro-QoL measures successfully discriminated between different levels of seizure severity.
 
Responsiveness to Change – Measures showed sensitivity to self-reported change in health status.
 
Weaknesses: Responsiveness has not been evaluated in intervention or other trials designed to produce change. Neuro-QoL measures do not have caregiver- report versions, limiting their use in adults with cognitive or other deficits that prevent self-report.
 
Pediatric Neuro-QoL Short Forms
 
Reliability – internal consistency (ICCs) of individual instruments ranged from 0.44 for Stigma to 0.94 for Upper Extremity Function. Except for Stigma, all measures had ICCs greater than .62. Test-retest reliability (Cronbach’s alpha) ranged from 0.76- 0.87.
 
Validity – Neuro-QoL measures correlated in expected directions with generic and epilepsy-specific measures of similar domains (convergent validity). Anxiety and Cognitive Function discriminated amongst participants with different seizure severity levels. All pediatric Neuro-QoL measures except Cognitive Function and Upper Extremity Function discriminated participants with different levels of quality of life.
 
Responsiveness to Change – Neuro-QoL did not show sensitivity to self-reported change over time. This finding may have been due to lack of change in the sample, as the primary legacy measure (PedsQL) also failed to demonstrate responsiveness.
 
Weaknesses: The measures do not have parent-report versions and therefore are not appropriate for use with children younger than 8 years of age.
 
Responsiveness to change has yet to be evaluated in studies where change is to be expected.
References
Neuro-QOL Bank Development and Construction. . Quality of Life in Neurological Disorders (accessed February 26, 2018).
 
Cella D, Nowinski C, Peterman A, Victorson D, Miller D, Lai JS, Moy C. The neurology quality-of-life measurement initiative. Arch Phys Med Rehabil. 2011;92(10 Suppl):S28–36.
 
Correia H, Pérez B, Arnold B, Wong AW, Lai JS, Kallen M, Cella D. Spanish translation and linguistic validation of the quality of life in neurological disorders (Neuro-QoL) measurement system. Qual Life Res. 2015;24(3):753–756.
 
Lai JS, Nowinski C, Victorson D, Bode R, Podrabsky T, McKinney N, Straube D, Holmes GL, McDonald CM, Henricson E, Abresch RT, Moy CS, Cella D. Quality-of-life measures in children with neurological conditions: pediatric Neuro-QOL. Neurorehabil Neural Repair. 2012;26(1):36–47.
 
Lai JS, Nowinski CJ, Zelko F, Wortman K, Burns J, Nordli DR, Cella D. Validation of the Neuro-QoL measurement system in children with epilepsy. Epilepsy Behav. 2015;46:209–214.
 
Victorson D, Cavazos JE, Holmes GL, Reder AT, Wojna V, Nowinski C, Miller D, Buono S, Mueller A, Moy C, Cella D. Validity of the Neurology Quality-of-Life (Neuro-QoL) measurement system in adult epilepsy. Epilepsy Behav. 2014;31:77–84.
Recommended Instrument for
Epilepsy
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