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

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). Neuro-QoL 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-methods 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, of which the majority were male (62%), 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. 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 & Well-being. Neuro-QoL 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 & .53, respectively), as were relations with the PROMIS Global Mental Health subscale (r’s = .59, .74 & .52, respectively). Moderate correlations were observed between Neuro-QoL Social Role Performance and Satisfaction and the QOLIE-31 Social Function (r’s = .58 & .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 & .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 & .75, respectively) and moderate relations with the Liverpool Adverse Events scale (r’s = .51 & .69, respectively). Finally, the Neuro-QoL Fatigue measure demonstrated moderate associations with the QOLIE-31 Energy/Fatigue subscale (r=−.65), Liverpool Adverse Events Scale (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 & 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.

Quality of life measures in older adults after traumatic brain injury: a systematic review

“…Developed with senior citizens in mind. This measures in largely cognitive based and fails to tap into the emotional domain [59]International use: English and multiple other languages available [58]Cost: Free; must contact copyright owner to use [58]Administration: self [58]Estimated completion time: < 10 minutes [58]Response options: 7-point Likert scale [58]NeuroQoL16 domains(564)Physical, emotional, cognitive and social patient functionValidity : + in studies of neurological populations and pediatric TBI population and + content validity in military populations with TBI [4, 48, 61, 63]Reliability: + in studies of neurological populations and pediatric TBI population + internal consistency in military population with TBI [48, 60]Measure can be used for adults and children; however, this may not take into consideration the unique challenges of an older adult. NeuroQol considered at item bank in which the assessment is individually tailored based on responses to previous items.…”

Neuro‐QoL health‐related quality of life measurement system: Validation in Parkinson's disease

“…The Neuro-QoL system has been validated in adult epilepsy, and individual Neuro-QoL measures have been validated in other diseases. [20][21][22]…”

Validation and Reliability Study of the Turkish Version of the Neuroquality of Life (Neuro-QoL) - Stigma Scale in Neurological Disorders

“…Increased knowledge of patients about epilepsy and the presence of positive attitudes towards epilepsy were associated with decreased stigma scores in patients with epilepsy (32,33). Victorson et al reported that the T-score was 49.7 ± 9.1 in adult epilepsy patients by using the Neuro-QoL stigma scale (34). In the Neuro-QoL user manual, the T-score was defined as 50.6 ± 6.7 for epilepsy (16).…”