COSMIN database

Measuring outcomes for neurological disorders: a review of disease-specific health status instruments for three degenerative neurological conditions

Heffernan, C. and Jenkinson, C.
Health-related quality-of-life measures have been increasingly used in research into neurological disorders in recent years. The aim of this paper is to provide an objective appraisal of the evidence in regard to disease-specific quality-of-life measures used in research on health interventions for three degenerative neurological disorders: multiple sclerosis, motor neurone disease/amyotrophic lateral sclerosis and Parkinson's disease. A comprehensive search strategy was developed to include nine relevant electronic databases. Only studies pertaining to patient-based outcome measurements in multiple sclerosis, motor neurone disease and Parkinson's disease were included. We identified 76 eligible studies. As studies consisted of descriptive and cross-sectional survey study designs, results were reported qualitatively rather than in the form of a meta-analysis. Four disease-specific measures were found for Parkinson's disease, 11 for multiple sclerosis and one for motor neurone disease. We conclude that health-related quality-of-life measures are useful in assessing the impact of treatments and interventions for neurological disorders. However, further research is needed on the development of instruments using psychometric methods and on the validation, utilization and responsiveness of instruments to change.
Chronic Illn
1742-3953 (Print)
Publication year:
General health perceptions / HRQoL:
Health-related quality of life
Adults (18-65)
Seniors (65+)
Diseases of and symptoms related to the nervous system
PRO / non-PRO:
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
2 - Interviews
ALSAQ-40 - Amyotrophic Lateral Sclerosis Assessment Questionnaire-40 items
ALSAQ-5 - Amyotrophic Lateral Sclerosis Assessment Questionnaire-5 items
FAMS - Functional Assessment of Multiple Sclerosis
HAQUAMS - Hamburg Quality of Life Questionnaire in Multiple Sclerosis
HRQOL-MS - Health-Related Quality Of Life questionnaire for Multiple Sclerosis
LMSQoL - Leeds Multiple Sclerosis Quality of Life Scale
MND Coping Scale - Motor Neurone Disease Coping Scale
MS ADL Scales - Multiple Sclerosis Activities of Daily Living Scales
MSIS-29 - Multiple Sclerosis Impact Scale   
MS-QLI - Multiple Sclerosis-Quality of Life Index
MSQLI - Multiple Sclerosis Quality of Life Inventory
MSQoL-54 - Multiple Sclerosis Quality of Life-54 Instrument (versions: Short Version; electronic Short Form [eMSQOL-29 SF])
PDQ-39 - Parkinson’s Disease Questionnaire-39-item   
PDQ-39SI - Parkinson's Disease Questionnaire 39 items-single index
PDQ-8 - Parkinson’s Disease Questionnaire-8-item
PDQL - Parkinson’s Disease Quality of Life questionnaire   
PDQUALIF - Parkinson’s Disease Quality of Life Scale
PIMS - Parkinson’s Impact Scale
QOLQ for MS - Quality of Life Questionnaire for Multiple Sclerosis
RAYS Scale
SEIQoL - Schedule for the Evaluation of Individual Quality of Life
SF-36 - 36-item Short Form Health Survey [alias: RAND-36][alias: Medical Outcomes Study (MOS) SF-36]]    |  | also see:
SIP - Sickness Impact Profile   
Social Withdrawal Scale