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Neuro-QoL health-related quality of life measurement system
  • Basic Information
  • Detailed Information
  • Domains
  • Psychometrics

Basic Information

Abbreviated name
Neuro-QoL
Full name
Neuro-QoL health-related quality of life measurement system
Short description
The NeuoQoL measure was recently co-designed with patients and carers, measuring aspects of physical, mental, and social health. It possesses characteristics such as brevity, flexibility in administration, and suitability, for cross-disease comparisons that may be advantageous to users in a variety of settings. The project is targeting 5 adult conditions (stroke, multiple sclerosis, Parkinsons disease, epilepsy and ALS) and 2 paediatric conditions (epilepsy and muscular dystrophies).
PCCC or QoL? ?
This compendium contains patient-reported measures that are either designed to specifically measure aspects of Person Centred Co-Ordinated Care (P3C), or alternatively tools that are designed to measure some aspect of Quality of Life (QoL) or Health Related Quality of Life (hrQoL). All the measures in this compendium have been broadly categorised into one of those two concepts.
Quality of Life
Main Domains Measured ?
This is the key domains that the measure is targeting.
Quality of Life for Neurological Conditions
Type of measure ?
The measures in this compendium can take a variety of forms. Generally, they will be either Patient Reported Outcome Measure (PROM) or Patient Reported Experience Measure (PREM). However, we have also included a few measures that are completed by proxy-individual (PROXY), which are useful in instances where the respondent cannot answer directly (e.g. dementia or end of life). Sometimes, these measures can even be a composite of these types, and target both experiences and outcomes – we have labelled these measures “PROEMs”.
PROM
Respondent ?
The person that fills in the questionnaire - e.g. patient, Health Care Professional, or proxy (normally a carer or family member)
Patients
Permissive licence ?
Whether the measure is free to use without major restrictions, or instead permission and/or licensing fees are required. E.g. if "Yes", you should seek authorisation/permission prior to using the instrument.
Yes

Detailed Information

Year developed ?
The year in which the measure was first published.
2016
Country developed in ?
The main country[s] in which the measure was first developed.
US
Original publication ?
The publication in which the measure was originally published.
Search Citations of Original Reference
http://www.ncbi.nlm.nih.gov/pubmed/26919664
Target condition ?
The measures can be either generic or disease specific (e.g. Diabetes, Heart Failure)
Neurological Conditions (Stroke, Parkinson's, Epilepsy etc.)
Main context tested in ?
The main context in which the measure has been developed and used (E.g. Hopital, General Practice etc).
Academic medical centers
Main countries used in ?
The main countries in which the measure has been developed and used.
US
Target age ?
e.g. Adults, Children, Elderly
Adults
Main uses of measure ?
The context in which the measure is most often used – e.g. clinical trials; national surveys.
QoL for Neurological Conditions
Used in UK? ?
Whether the instrument has been tested and validated within a UK healthcare context.
No
Language
English

Domains

Domain description
Quality of Life for Neurological Conditions

Psychometrics

Brief description ?
A brief description of the initially reported psychometric properties of the measure.
Internal consistency and test-retest reliability of Neuro-QoL ranged from Cronbach's alphas?=?0.81 to 0.94 with intraclass correlation coefficients?=?0.66 to 0.80. Pearson's correlations between Neuro-QoL and legacy measures were generally moderate and in expected directions.
Co-developed with patients ?
Whether the measure was co-developed with patients, a critical stage in the design and implementation of truly person-centred measures.
Y
CTT or IRT ?
Whether the measure uses Classical Test Theory, or the newer Item Response Theory
IRT