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RehabMeasures Instrument

Neuro-QOL

Last Updated

Purpose

The NeuroQOL is a self-report of health related quality of life in 17 domains and sub-domains for adults and 11 for children with neurological disorders. The measure is available for administration via Computer Assisted Testing or in short forms (8-10 items) for each sub-domain that can be selected based on individual patient needs.

Link to Instrument

Instrument Details

Acronym Neuro-QOL

Area of Assessment

Activities of Daily Living
Attention & Working Memory
Behavior
Cognition
Communication
Depression
Executive Functioning
Functional Mobility
Life Participation
Mental Health
Negative Affect
Occupational Performance
Pain
Patient Satisfaction
Positive Affect
Quality of Life
Social Relationships
Social Support
Sleep
Stress & Coping

Assessment Type

Patient Reported Outcomes

Cost

Free

Diagnosis/Conditions

  • Multiple Sclerosis
  • Parkinson's Disease + Neurologic Rehabilitation
  • Stroke Recovery

Key Descriptions

  • Adult Bank Domains (11):
    • Ability to Participate in Social Roles and Activities
    • Anxiety
    • Cognitive Function
    • Depression
    • Emotional and Behavioral Dyscontrol
    • Fatigue
    • Lower Extremity Function (Mobility)
    • Positive Affect and Well-Being
    • Satisfaction with Social Roles and Activities
    • Stigma
    • Upper Extremity Function (Fine Motor, ADL)
  • Adult Short Form Domains (13):
    • Ability to Participate in Social Roles and Activities
    • Anxiety
    • Cognitive Function
    • Communication
    • Depression
    • Emotional and Behavioral Dyscontrol
    • Fatigue
    • Lower Extremity Function (Mobility)
    • Positive Affect and Well-Being
    • Satisfaction with Social Roles and Activities
    • Sleep Disturbance
    • Stigma
    • Upper Extremity Function (Fine Motor, ADL)
  • Pediatric Bank Domains (8):
    • Anxiety
    • Cognitive Function
    • Depression
    • Fatigue
    • Lower Extremity (Mobility)
    • Social Relation-Interaction with Peers
    • Stigma
    • Upper Extremity Function (Fine Motor ADL)
  • Pediatric Short Form Domains (8):
    • Anger
    • Anxiety
    • Fatigue
    • Cognitive Function
    • Depression
    • Pain
    • Stigma
    • Social Relation- Interaction with Peers
  • Raw scores are converted based on consistent metric (T-distribution) with data from the US general population with a T-score mean of 50 and standard deviation of 10.
  • Visit www.neuroqol.org for information about use of the measure in short form or a computer-assisted format (internet-connected or stand alone computer).
  • Scoring via computer or can be calculated using tables in the NeuroQOL user manual for each short form.
  • Adult Banks include 19-45 items, Adult Short Forms include 5-9 items, Pediatric Banks include 11-20 items, Pediatric Short Forms include 8-10 items.

    Items are scored on a 5-point scale that uses different language depending on assessment. The questions range from least (1) to most (5) based on frequency of behavior, amount of difficulty, or degree of agreement.

    Administration details are included under “Considerations” below.

Number of Items

Adult Bank: 19-45 items per bank
Adult Short Form: 5-9 items per bank
Pediatric Bank: 1-20 items per bank
Pediatric Short Form: 8-10 items items per bank

Equipment Required

  • Item banks, Short forms, OR computer with NeuroQOL

Time to Administer

2-5 minutes

Each domain tested can be completed in <2 minutes. Computer Assisted Testing arrives at a score based on responses to each question, presenting a variable number of items with adaptive content.

Required Training

No Training

Age Ranges

Child

8 - 12

years

Adolescent

13 - 17

years

Adult

18 - 64

years

Elderly Adult

+

years

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

Body Part

Head
Upper Extremity
Lower Extremity

ICF Domain

Body Structure
Body Function
Activity
Participation

Measurement Domain

Activities of Daily Living
Cognition
Emotion
Motor

Professional Association Recommendation

NINDS CDE Status as of 7/10/2019 for all Adult Bank Items:
  • 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

Abbreviations:

 

HR

Highly Recommend

R

Recommend

LS / UR

Reasonable to use, but limited study in target group  / Unable to Recommend

NR

Not Recommended

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

 

Acute Care

Inpatient Rehabilitation

Skilled Nursing Facility

Outpatient

Rehabilitation

Home Health

TBI EDGE

NR

NR

LS

LS

LS

Recommendations for use based on ambulatory status after brain injury:

 

Completely Independent

Mildly dependant

Moderately Dependant

Severely Dependant

TBI EDGE

N/A

N/A

N/A

N/A

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

 

Students should learn to administer this tool? (Y/N)

Students should be exposed to tool? (Y/N)

Appropriate for use in intervention research studies? (Y/N)

Is additional research warranted for this tool (Y/N)

TBI EDGE

No

Yes

Yes

Not reported

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!

Mixed Populations

back to Populations

Normative Data

Development populations included:


Individuals with epilepsy, stroke, ALS, MS and Parkinson’s disease. Additional work is underway with patients with TBI, but has not been published yet

 

General US Population norms: 

Cella et al, 2012 reference values were generated from 2113 English speaking adults without neurological conditions, mean age 52.7 (15.5) years. 

NeuroQOL subdomains 

General population mean 

SD 

Positive Affect & Well-being 

54.92 

8.02 

Applied Cognition - General 

43.70 

8.58 

Applied Cognition - Executive Function 

43.67 

10.48 

Lower extremity (mobility) 

42.73 

7.98 

Upper extremity (fine motor, ADL) 

38.45 

9.38 

Ability to participate social roles/ activities 

46.08 

7.09 

Satisfaction with social roles/activities 

45.30 

5.49 

Depression 

47.23 

7.48 

Anxiety 

50.82 

6.61 

Interrater/Intrarater Reliability

Self-report measure.

Internal Consistency

Cella et al, 2012 used three samples n=2113 general population (internet), n=553 clinical diagnoses (internet), n=581 clinical diagnoses (outpatient). Excellent internal consistency of 13 item banks (alpha ranged .85-.97)

Criterion Validity (Predictive/Concurrent)

Criterion validity addressed for many populations by correlating NeuroQOL scores to disease specific QOL measures in final NeuroQOL report, but not TBI.

Construct Validity

Mixed neurologic population

Excellent correlation of short forms to full length item banks (r=.82-.96). Short forms were able to differentiate between people with 0, 1-2, and 3 reported diagnoses and activity limitations. (Cella et al, 2012)

Content Validity

NeuroQOL investigators entered more than 3000 items in the NeuroQOL item library with an iterative process of sorting items into categories and systematically removing items because of redundancies, better alternatives, vague or confusing language, cultural relevance, gender inappropriateness, and excessive disease specificity. Items from PROMIS (Patient Reported Outcomes Measurement Information System) and AM-PAC (Activity Measurement for Post Acute Care) were compared. Item pools were vetted by patients with neurological conditions via phone interviews to clarify concepts and rating options. Gaps in item banks were also addressed with items added based on patients and expert feedback. (Neuroqol Website) 

 

Carlozzi et al, 2011 conducted focus groups and structured interviews with people with TBI, caregivers and providers (total n=55) to determine the appropriateness of the standard NeuroQOL items for survivors of brain injury. Concluded that NeuroQOL items miss some important concepts that are critical following TBI especially emotional health issues (resilience, self-esteem and being made to feel “dumb”, negative perceptions by others, anger/grief at loss of pre-injury life). The complexity of social participation limitations and loss of autonomy that occurs after TBI does not appear to be adequately addressed with generic NeuroQOL items.

Face Validity

See content validity

Stroke

back to Populations

Test/Retest Reliability

Note: Test retest reliability established in multiple populations (NeuroQOL final report), providing one example, although TBI has not been reported. 

Stroke: (NeuroQOL final report) 

  • Excellent test-retest reliability (ICC range .73-.94)

Parkinson's Disease

back to Populations

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

 

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