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Quality of Life in Neurological Disorders (Neuro-QOL)
Please visit this website for more information about the instrument: Quality of Life in Neurological Disorders
NeuroRehab Supplemental - Highly Recommended
Recommendations for Use: Indicated for studies requiring a Global Health-Related Quality of Life measure. The usage of individual item banks are recommended for the following domains: Anxiety; Cognitive Function; Depression; Fatigue; Lower Extremity Function; Positive Affect and Well-Being; Ability to Participate in Social Roles and Activities (SRA); Satisfaction with SRA; Sleep Disturbance; Stigma; Upper Extremity. This instrument is also relevant for emotion and behavior studies.
Supplemental - Highly Recommended: Congenital Muscular Dystrophy (CMD), Huntington's Disease (HD), Mitochondrial Disease (Mito), Parkinson's Disease (PD), and Stroke
Recommendations for Use: Highly recommended for studies of psychosocial functioning, quality-of- life, outcome, and long-term adjustment studies.
Supplemental: Amyotrophic Lateral Sclerosis (ALS), Chiari I Malformation (CM), Epilepsy, Friedreich's Ataxia (FA), Headache, Multiple Sclerosis (MS), Myasthenia Gravis (MG), Neuromuscular Disease (NMD), Spinal Cord Injury (SCI), Spinal Muscular Atrophy (SMA), and Traumatic Brain Injury (TBI)
Exploratory: Cerebral Palsy (CP), Duchenne Muscular Dystrophy (DMD), Facioscapulohumeral Muscular Dystrophy (FSHD), Myotonic Dystrophy (DM), Sport-Related Concussion (SRC), and Unruptured Cerebral Aneurysms and Subarachnoid Hemorrhage (SAH)
Short Description of Instrument
Purpose: The Neuro-QOL is a Patient Reported Outcome (PRO) measurement system designed for neurologically impaired populations. Neuro-QOL seeks to incorporate patient reported outcomes of functioning, such as social, psychological, and mental well-being.
Overview: The Neuro-QOL contains 12 calibrated item banks with Likert-style items and 1 uncalibrated scale (Communication) with several banks linked with PROMIS. Item banks cover the following domains: Lower Extremity Function-Mobility, Upper Extremity Function-Fine Motor, ADL, Depression, Anxiety, Positive Affect and Well-Being, Stigma, Cognitive Function (formerly 2 separate banks assessing general cognitive concerns and executive function), Social Role Performance, Satisfaction with Social Roles and Activities, Fatigue, Emotional and Behavioral Dyscontrol, and Sleep Disturbance There are also additional disease-specific item banks developed for HD and TBI caregivers.
Time: Administered as short-forms or as Computer Adaptive Tests (CATs). Administration time is less than 5 minutes per sub domain (total time for short form across all domains is about 30 minutes).
Other Important Notes: The Neuro-QOL is designed to be a common outcome variable across NINDS-sponsored clinical trials. It has been assessed in large samples of individuals from both general and diverse, neurologically impaired populations.
Stroke: Adult Mobility, Adult Upper Extremities, Adult Assistive Devices
Comments/Special Instructions
NeuroRehab-Specific: The following individual item banks are suggested for domain-specific usage:
Neuro-QOL Adult Bank - Ability to Participate in SRA
Neuro-QOL Adult Bank - Anxiety
Neuro-QOL Adult Bank - Cognitive Function
Neuro-QOL Adult Bank - Depression
Neuro-QOL Adult Bank - Fatigue
Neuro-QOL Adult Bank - Lower Extremity Function
Neuro-QOL Adult Bank - Positive Affect and Well-Being
Neuro-QOL Adult Bank - Satisfaction with SRA
Neuro-QOL Adult Bank - Sleep Disturbance
Neuro-QOL Adult Bank - Stigma
Neuro-QOL Adult Bank - Upper Extremity
Mitochondrial Disease-Specific: The following individual item banks are suggested for domain-specific usage:
Neuro-QOL Adult Bank - Fatigue
Scoring and Psychometric Properties
Scoring: Patient reads Likert items on computer screen or paper form and responds. Embedded in several of the Neuro-QOL domains are a significant number of Patient-Reported Outcomes Measurement Information System (PROMIS) items. As a result, a PROMIS equivalency score can be derived for all individuals who complete the Neuro-QOL measures.
No summary measures but domain scores.
Psychometric Properties: It is a clinically relevant and psychometrically robust health-related quality of life (HRQOL) assessment tool for adults and children that is responsive to the needs of researchers in a variety of neurological disorders and settings and facilitates comparisons of data across clinical trials in different diseases. For NeuroRehab, available psychometric information varies across conditions.
Parkinson's Disease-Specific:
Internal consistency ranged from Cronbach's alphas = 0.81 to 0.94 with intraclass correlation coefficients = 0.66 to 0.80.
PD patients were included in the development.
Strengths: Neuro-QOL includes multiple banks and short forms that cover a variety of domains. These domains were initially developed for adult neurological patients with ALS, epilepsy, multiple sclerosis, Parkinson's disease, and stroke and for pediatric patients with epilepsy and muscular dystrophy (e.g., Duchenne Muscular Dystrophy). Each domain is a separate measure.
DM-Specific Weaknesses: The instruments include CATs, short forms, and scales. These instruments and domains were not developed specifically for myotonic dystrophy or validated in this population.
Parkinson's Disease-Specific:
Strengths: Relevant to PD across multiple domains, including physical, mental, and social health.
Weaknesses: Some item pools that are relevant to PD have not been evaluated.
Mitochondrial Disease-Specific:
Strengths: Well established. Assessment of upper limb function, fine motor function and impact on everyday activities. Items include anxiety and depression.
Weaknesses: Not validated but has been used in trials. Adult Bank - Fatigue has not been used individually; overall NeuroQoL has been used and validated in NMD.
Key References:
Cella D, Lai JS, Nowinski CJ, Victorson D, Peterman A, Miller D, Bethoux F, Heinemann A, Rubin S, Cavazos JE, Reder AT, Sufit R, Simuni T, Holmes GL, Siderowf A, Wojna V, Bode R, McKinney N, Podrabsky T, Wortman K, Choi S, Gershon R, Rothrock N, Moy C. Neuro-QOL: brief measures of health-related quality of life for clinical research in neurology. Neurology. 2012 Jun 5;78(23):1860-7.
Gershon RC, Lai JS, Bode R, Choi S, Moy C, Bleck T, Miller D, Peterman A, Cella D. Neuro-QOL: quality of life item banks for adults with neurological disorders: item development and calibrations based upon clinical and general population testing. Qual Life Res. 2012 Apr;21(3):475-86.
Katzan IL, Thompson N, Uchino K. Innovations in Stroke: The Use of PROMIS and NeuroQoL Scales in Clinical Stroke Trials. Stroke. 2016 Feb;47(2):e27-30.
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 Jan;26(1):36-47.
TBI CDE Working Group (2010). CDE Recommendations - Listing of the Core, Supplemental and Emerging Measures for each Outcome Domain.
Neuro-QOL Bank Development and Construction. Quality of Life in Neurological Disorders (accessed December 16, 2019).
Huntington's Disease-Specific References:
Carlozzi, NE. Examining health-related quality of life in Huntington's disease. In AW Heinemann (Chair), Advances in Outcome Measures for Neurologic Disorders. Symposia presented at the ACRM-ASNR Joint Educational Conference, Montreal, Quebec, Canada. 2010.
Carlozzi NE. Adaptations of the PROMIS and Neuro-QOL to traumatic brain injury (TBI) and Huntington disease (HD). In: DS Tulsky, NE Carlozzi (Co-Chairs), Common data elements in neurological research. Symposia submitted for presentation at the 40th Annual International Neuropsychological Society Meeting, Montreal, Canada. 2012.
Carlozzi NE, Boileau NR, Chou KL, Ready RE, Cella D, McCormack MK, Miner JA, Dayalu P. HDQLIFE and neuro-QoL physical function measures: Responsiveness in persons with Huntington's Disease. Mov Disord. 2020 Feb;35(2):326-336.
Carlozzi NE, Boileau NR, Hahn EA, Barton SK, Cella D, McCormack MK, Ready RE. Responsiveness to Change Over Time: An Examination of the Neuro-QoL Social Function Measures in Persons with Huntington's Disease. J Huntingtons Dis. 2020;9(1):83-97.
Carlozzi NE, Boileau NR, Paulsen JS, Downing NR, Ready R, Perlmutter JS, Cella D, Chou KL, McCormack MK, Barton S, Lai JS. Psychometric properties and responsiveness of Neuro-QoL Cognitive Function in persons with Huntington disease (HD). Qual Life Res. 2020 May;29(5):1393-1403.
Carlozzi NE, Boileau NR, Roche MW, Ready RE, Perlmutter JS, Chou KL, Barton SK, McCormack MK, Stout JC, Cella D, Miner JA, Paulsen JS. Responsiveness to change over time and test-retest reliability of the PROMIS and Neuro-QoL mental health measures in persons with Huntington disease (HD). Qual Life Res. 2020 Dec;29(12):3419-3439.
Carlozzi NE, Goodnight S, Kratz AL, Stout JC, McCormack MK, Paulsen JS, Boileau NR, Cella D, Ready RE. Validation of Neuro-QoL and PROMIS Mental Health Patient Reported Outcome Measures in Persons with Huntington Disease. J Huntingtons Dis. 2019;8(4):467-482.
Carlozzi NE, Hahn EA, Goodnight SM, Kratz AL, Paulsen JS, Stout JC, Frank S, Miner JA, Cella D, Gershon RC, Schilling SG, Ready RE. Patient-reported outcome measures in Huntington disease: Quality of life in neurological disorders (Neuro-QoL) social functioning measures. Psychol Assess. 2018 Apr;30(4):450-458.
Carlozzi NE, McGowan H, Tulsky DS. Extending the Neuro-QOL to Huntington's Disease (HD): The development of the HD-HRQOL. Poster presented at the International Society for Quality of Life Research 17th Annual Conference, London, England. 2010.
Carlozzi NE, Ready RE. Health-related quality of life in Huntington's Disease. In: C. Jenkinson, M. Peters, M. B. Bromberg (Eds.), Quality of Life and Neurodegenerative Disease. Cambridge, UK: Cambridge University Press. 2011; 71-81.
Carlozzi NE, Ready RE, Frank S, Cella D, Hahn EA, Goodnight SM, Schilling SG, Boileau NR, Dayalu P. Patient-reported outcomes in Huntington's disease: Quality of life in neurological disorders (Neuro-QoL) and Huntington's disease health-related quality of life (HDQLIFE) physical function measures. Mov Disord. 2017 Jul;32(7):1096-1102.
Carlozzi NE, Schilling SG, Lai JS, Paulsen JS, Hahn EA, Perlmutter JS, Ross CA, Downing NR, Kratz AL, McCormack MK, Nance MA, Quaid KA, Stout JC, Gershon RC, Ready RE, Miner JA, Barton SK, Perlman SL, Rao SM, Frank S, Shoulson I, Marin H, Geschwind MD, Dayalu P, Goodnight SM, Cella D. HDQLIFE: development and assessment of health-related quality of life in Huntington disease (HD). Qual Life Res. 2016 Oct;25(10):2441-2455.
Carlozzi NE, Tulsky DS. Health-related quality of life in Huntington disease. Published Abstract from the Huntington's Disease World Congress 2011, Melbourne, Australia. Clin Genetics, 2011;80 (Suppl 1):37-38.
Carlozzi NE, Tulsky DS. Identification of health-related quality of life (HRQOL) issues relevant to individuals with Huntington disease. J Health Psychol. 2013 Feb;18(2):212-25.
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 Oct;92(10 Suppl):S28-S36.
Lai JS, Goodnight S, Downing NR, Ready RE, Paulsen JS, Kratz AL, Stout JC, McCormack MK, Cella D, Ross C, Russell J, Carlozzi NE. Evaluating cognition in individuals with Huntington disease: Neuro-QoL cognitive functioning measures. Qual Life Res. 2018 Mar;27(3):811-822.
Epilepsy-Specific References:
Correia H, Perez 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 Mar;24(3):753-6.
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 Jan;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 May;46:209-14.
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 Feb;31:77-84.
Mitochondrial Disease-Specific Reference:
Karaa A, Haas R, Goldstein A, Vockley J, Cohen BH. A randomized crossover trial of elamipretide in adults with primary mitochondrial myopathy. J Cachexia Sarcopenia Muscle. 2020 Aug;11(4):909-18.
Parkinson's Disease-Specific Reference:
Nowinski CJ, Siderowf A, Simuni T, Wortman C, Moy C, Cella D. Neuro-QoL health-related quality of life measurement system: Validation in Parkinson's disease. Mov Disord. 2016 May;31(5):725-33.
Document last updated March 2024