COSMIN database

Patient-reported outcomes in multiple sclerosis: a systematic comparison of available measures

Khurana, V., Sharma, H., Afroz, N., Callan, A., and Medin, J.
Multiple patient-reported outcomes (PROs) are currently being used in multiple sclerosis (MS) but their application is inconsistent and guidance on the appropriateness of each tool is lacking. The objective of our study was to identify MS-specific PROs and systematically to assess the development process and the reliability and validity of various instruments. A systematic literature search was conducted on multiple data sources, including MEDLINE, Embase (using the Ovid platform) and Google Scholar, from 1996 to March 2015. Search terms included combinations of MS, PROs and quality of life. Randomized controlled trials or observational studies conducted on patients with MS and published in English were included. In addition, the PROQOLID database was explored. The MS-specific PROs were systematically assessed using the Evaluating the Measurement of Patient-Reported Outcomes tool. In total, 8094 articles were screened and 405 PROs were identified from 1102 relevant articles. PROs were classified into MS-specific (n = 82) and non-MS-specific (n = 323). The results for the eight PROs that are most commonly used in MS clinical trials are presented here. For these eight PROs, the overall summary scores ranged between 50.1 and 68.7. The Multiple Sclerosis Impact Scale-29 had the best overall mean score (68.7), followed by the Leeds Multiple Sclerosis Quality of Life (67.0). This is the first study to provide a standardized assessment of all PROs for MS. There is a lack of data on content validity for PROs used in MS research, which indicates the need for a robust instrument in MS developed according to the US Food and Drug Administration guidelines.
Eur J Neurol
Publication year:
Symptom status:
Cognitive/mental state
Emotional state
Physical state
Functional status:
Cognitive/mental functioning
Physical functioning
Role functioning
Social functioning
General health perceptions / HRQoL:
Self-rated health
Overall quality of life:
Overall 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
FAMS - Functional Assessment of Multiple Sclerosis
HAQUAMS - Hamburg Quality of Life Questionnaire in Multiple Sclerosis
LMSQoL - Leeds Multiple Sclerosis Quality of Life Scale
MSIS-29 - Multiple Sclerosis Impact Scale   
MSQoL-54 - Multiple Sclerosis Quality of Life-54 Instrument (versions: MSQoL-SV; eMSQOL-SF)
MSWS-12 - Multiple Sclerosis Walking Scale-12
MusiQoL-MCAT - Multiple Sclerosis International Quality of Life questionnaire multidimensional computerized adaptive short-form questionnaire
PRIMUS - Patient-Reported Indices for MS Activity Limitations Scale