Helpful Resources
Watch a 5-minute video in which Cleveland Clinic neurologist Deborah Miller, MD describes tools for quality-of-life measurement in multiple sclerosis.
Intro to Neuro-QoLTM
Neuro-QoL measures quantify the physical, mental, and social effects experienced by adults and children living with neurological conditions.
Adult Assessment
- Neuro-QoL developed a set of health-related quality of life measures for use with adults who have a neurological condition or disorder. See the List of Adult Measures>>
- Self-report measures can be completed by a proxy responder when necessary. Learn more>>
- Measures are available in Spanish and other languages. See the List of Available Translations>>
- Neuro-QoL measures can be administered in multiple ways, and English paper-and-pencil measures are available for free. Learn how to obtain and administer Neuro-QoL measures>>
- Neuro-QoL measures include specific symptoms, functions, and experiences of people with Huntington disease (HDQLIFE) and caregivers for people with traumatic brain injury (TBI-CareQOL). Learn more>>
Pediatric Assessment
- Neuro-QoL developed a set of health-related quality of life measures for use with 8-17 year olds who have a neurological condition or disorder. See the List of Pediatric Measures>>
- The self-report measures can be completed by a parent or caregiver when necessary.
- Measures are available in Spanish and other languages. See the List of Available Translations>>
- Neuro-QoL measures can be administered in multiple ways, and English paper-and-pencil measures are available for free. Learn how to obtain and administer Neuro-QoL measures>>
Short Forms and Computer Adaptive Tests
Neuro-QoL offers three types of instruments.
- Short Forms: fixed set of 5-10 items or questions for one domain.
- Computer Adaptive Tests (CATs): items are dynamically selected for administration from an item bank based upon the respondent’s previous answers. Usually 4-12 items with a high level of measurement precision. Learn more about CATs>> or try out a CAT>>
- Scales: fixed set of items for one domain. Items are not from an item bank. Can be calibrated (e.g., HDQLIFE End of Life Planning) or uncalibrated (e.g., Communication).
Neuro-QoL is Appropriate for Use Across a Range of Neurological Conditions
Neuro-QoL measures can be used in a range of adult and pediatric neurological conditions including but not limited to: stroke, multiple sclerosis, Parkinson’s disease, epilepsy, amyotrophic lateral sclerosis (ALS), traumatic brain injury (TBI), military deployment–related traumatic brain injury (MDR-TBI), spinal cord injury (SCI), and Huntington’s disease (HD). The Neuro-QoL HDQLIFE measures are particularly suited for individuals with HD. The Neuro-QoL TBI-CareQOL measures were developed for caregivers for people with TBI, but may be useful for other caregivers as well.
Neuro-QoL measures can be administered alongside PROMIS® or NIH Toolbox® measures that assess other aspects of health and function.
Active Neuro-QoL Research
- Neuro-QoL’s rigorous measure development methodology included patients, clinicians, and measurement scientists. Learn more about the development of Neuro-QoL measures>>
- Substantial qualitative and quantitative evidence continues to be published supporting the validity of Neuro-QoL measures. Learn more about the validation of Neuro-QoL measures>>
- There are over 100 Neuro-QoL publications. See the List of Publications>>
To learn more about Neuro-QoL, watch this 4-minute introductory video.
Neuro-QoL: A New Patient-Reported Outcome Measure for Neurology Research and Practice
HealthMeasures is the official information and distribution center for Neuro-QoL which was developed and evaluated with National Institutes of Health (NIH) funding.
Last updated on 7/12/2024