Neuro-QOL

Instrument Reviewers

Initially reviewed by Karen McCulloch, PT, PhD, NCS and the TBI EDGE task force of the Neurology Section of the APTA in 2012

Updated by Bridget Hahn, OTD, OTR/L, Evangelia Cucuras, OTS, Rush University; Erica Engel, OTS, Rush University; Clare Stanhope, OTS, Rush University, 7/2019

Professional Association Recommendation

• Supplemental-Highly Recommended: Congenital Muscular Dystrophy (CMD)
  • 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, Huntington’s Disease (HD), Mitochondrial Disease (Mito), Multiple Sclerosis (MS), Myasthenia Gravis (MG), Neuromuscular Disease (NMD), Parkinson’s Disease (PD), 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), Stroke,  and Unruptured Cerebral Aneurysms and Subarachnoid Hemorrhage (SAH)

For detailed information on professional association recommendations, please visit: https://www.commondataelements.ninds.nih.gov/general.aspx#tab=Data_Standards

Recommendations for use of the instrument from the Neurology Section of the American Physical Therapy Association’s Multiple Sclerosis Taskforce (MSEDGE), Parkinson’s Taskforce (PD EDGE), Spinal Cord Injury Taskforce (PD EDGE), Stroke Taskforce (StrokEDGE), Traumatic Brain Injury Taskforce (TBI EDGE), and Vestibular Taskforce (Vestibular EDGE) are listed below. These recommendations were developed by a panel of research and clinical experts using a modified Delphi process.

For detailed information about how recommendations were made, please visit:  http://www.neuropt.org/go/healthcare-professionals/neurology-section-outcome-measures-recommendations

Recommendations based on level of care in which the assessment is taken:

Recommendations for use based on ambulatory status after brain injury:

Recommendations for entry-level physical therapy education and use in research:

Considerations

• Neuro-QOL self-report measures are intended to be completed by the respondent without help from anyone else.
• If respondents are unable to answer on their own, have someone else (“proxy”) report on their behalf. Respondents requiring a proxy may include: young children, people in the early stages of dementia who may not recognize the extent of their impairment, people with cognitive or communication deficits, and people with severe disease burden. There are specific instructions for a proxy to read prior to completing a measure.
• Keep respondents’ privacy in mind, but have staff readily available to help with any technology issues that may arise.
• It is acceptable for staff to define a term (e.g., “nausea”), but not to define a concept where the respondent’s subjective interpretation is the goal of the question (e.g., “quality of life”).
• Utilize the same method (e.g., computer, telephone or paper) and mode of administration (e.g., self vs. interviewer).
• In clinical settings, give respondents the optimal time needed to provide complete data at the appropriate time (e.g., before/after clinician visits, or in between visits). This may depend on the study aims and/or clinic work-flow.
• The text and responses of Neuro-QoL items cannot be altered in any way and still be considered a Neuro-QoL item. Users are welcome to modify the items, but cannot refer to these modified items as Neuro-QoL and we have no data about whether or not this modified version would have the same psychometric properties as the original Neuro-QoL item.  If you do modify items, please clearly specify in what ways the items were modified in any publications or other publicly disseminated work products.

Language and Cultural Considerations:

• All psychometric properties reported for U.S. population in English language
• Administrators should consider culture in interpretation of assessment

Spanish version available

Do you see an error or have a suggestion for this instrument summary? Please e-mail us!

Bibliography

Carlozzi, N. E., Tulsky, D. S., et al. (2011). "Traumatic brain injury patient-reported outcome measure: identification of health-related quality-of-life issues relevant to individuals with traumatic brain injury." Arch Phys Med Rehabil 92(10 Suppl): S52-60. Find it on PubMed

Cella, D., Lai, J. S., et al. (2012). "Neuro-QOL: brief measures of health-related quality of life for clinical research in neurology." Neurology 78(23): 1860-1867. Find it on PubMed

Katzan, I. L., Thompson, N., Uchino, K. (2015). Innovations in stroke: The use of PROMIS and NeuroQoL scales in clinical stroke trials. Stroke, 47(2), 27-30 doi: 10.1161/STROKEAHA.115.011377

Miller, D. M., Bethoux, F., Victorson, D., Nowinski, C. J., Buono, S., Lai, J. S., Moy, M., Cella, D. (2016). Validating Neuro-QoL short forms and targeted scales with people who have multiple sclerosis. HHS Public Access, 22(6), 830–841. doi:10.1177/1352458515599450

Nowinski, C. J., Siderowf, A., Simuni, T., Wortman, C., Moy, C., & Cella, D. (2016). Neuro-QoL health-related quality of life measurement system: validation in Parkinson’s Disease. Movement Disorders, 31(5), 725-733. doi: 10.1002/mds.26546

Lai, J, Nowinski, C., Zelko F., Wortman, K., Burns, J., Nordli D.R., & Celia, D. (2015). Validation of the Neuro-QoL measurement system in children with epilepsy. Epilepsy and Behavior, 46, 209-214. http://dx.doi.org/10.1016/j.yebeh.2015.02.038