Neuro QoL - sporedata/researchdesigneR GitHub Wiki
General description
The Quality of Life in Neurological Disorders (Neuro-QoL) Measure is a self-report of health-related quality of life (HRQOL) in 17 domains and sub-domains for adults and 11 for children with neurological disorders. The measure is available for administration via Computer Adaptive Tests (CATs) or in short forms (8-10 items) for each sub-domain that can be selected based on individual patient needs.
Neuro-QoL instruments were developed through a collaborative, multisite NINDS-sponsored research initiative to construct psychometrically sound and clinically relevant health-related quality-of-life measurement tools for individuals with neurological conditions. Neuro-QoL measures can be used in a range of adult and pediatric neurological conditions, including but not limited to amyotrophic lateral sclerosis (ALS), epilepsy, Huntington's disease (HD), military deployment–related traumatic brain injury (MDR-TBI), multiple sclerosis (MS), Parkinson's disease, spinal cord injury (SCI), stroke, and traumatic brain injury (TBI). Furthermore, Neuro-QoL measures include specific experiences, functions, and symptoms of people with Huntington's disease (HDQLIFE) and caregivers for people with traumatic brain injury (TBI-CareQOL), but may be helpful for other caregivers as well.
Neuro-QoL comprises Item banks and scales that evaluate relevant concerns, issues, and symptoms across disorders (generic measures) along with instruments that assess areas most relevant for specific patient populations (targeted). The NeuroQoL instruments enable within-disease and cross-disease comparisons and are intended for use in neurology clinical trials and clinical practice.
- 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. The self-report measures can be completed by a proxy responder when necessary.
- Pediatric Assessment
Neuro-QoL developed a set of health-related quality-of-life measures for use with children aged 8-17 years with a neurological condition or disorder. The self-report measures can be completed by a parent or caregiver when necessary.
Neuro-QoL offers three types of measures, all free, in multiple languages, and can be administered in various ways.
- 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, there are 4-12 items with high measurement precision.
- Scales: fixed set of items for one domain. Items are not from an item bank and can be calibrated (e.g., HDQLIFE End of Life Planning) or uncalibrated (e.g., Communication).
Linkages
- Neuro-QoL measures can be administered alongside PROMIS® or NIH Toolbox® measures that assess other aspects of function and health.
Related publications
- An invisible cause of disability: stigma in migraine and epilepsy
- Impact of acute symptomatic seizures and their management on patient-reported outcomes after stroke
- Association between PROMIS-10, SF-36 and NeuroQoL in persons with multiple sclerosis
- Dimensional Assessment of Depression and Anxiety in a Clinical Sample of Adults With Chronic Tic Disorder
- Demographic and clinical determinants of the quality of life in adults with inherited and acquired myopathies
- Design of a multi-institutional neurocognitive discovery study in adult congenital heart disease (MINDS-ACHD)
- The impact of stigma on perceived quality of life and experience of anxiety and depression in individuals diagnosed with MS
- Association of Grit With Postoperative Knee Outcomes and Physical Function After ACL Reconstruction in Adolescent Athletes
- Association of socioeconomic disadvantage and neighborhood disparities with clinical outcomes in multiple sclerosis patients
- Efficacy and Safety of Elamipretide in Individuals With Primary Mitochondrial Myopathy: The MMPOWER-3 Randomized Clinical Trial
- Concussion History and the Emotional and Behavioral Dyscontrol Domains of Health-Related Quality of Life in College Students
- Perceived stigma in adults with epilepsy in Sweden and associations with country of birth, socioeconomic status, and mental health
- Ecological Momentary Assessment of Real-World Functional Behaviors in Individuals With Stroke: A Longitudinal Observational Study
- Development and calibration data for the Healthcare Access Item Bank: a new computer adaptive test for persons with type 2 diabetes mellitus
- A dominance analysis of subjective cognitive complaint comorbidities in former professional football players with and without mild cognitive impairment
Data access
More information about Neuro-QoL can be found at https://www.healthmeasures.net/explore-measurement-systems/neuro-qol/intro-to-neuro-qol
To access Neuro-QoL data, visit https://www.healthmeasures.net/explore-measurement-systems/neuro-qol/obtain-and-administer-measures