COSMIN database

Quality of life measures for the palliative care of people severely affected by multiple sclerosis: a systematic review

Gruenewald, D. A., Higginson, I. J., Vivat, B., Edmonds, P., and Burman, R. E.
Although there is increasing interest in measuring the quality of life (QoL) of people with multiple sclerosis (MS), relatively little is known about the issues of importance to people severely affected by MS. In the first of two systematic reviews, we searched the literature to identify measures that have been used to assess health-related QoL in people with MS, and described their measurement properties in terms of validity, reliability, responsiveness to change, and appropriateness for QoL assessment in people severely affected by MS. In the second review, we identified care domains important to people with MS, by reviewing survey, focus group and interview studies involving people with MS and/or their caregivers. Forty-six studies evaluating 12 disease-specific and ten generic QoL measures for patients, and one disease-specific measure for caregivers, satisfied all inclusion criteria. Sixteen focus group or interview studies and 51 questionnaire-based studies evaluated domains of care important to people with MS, and seven qualitative and 11 questionnaire-based studies assessed domains of care important to their caregivers. From these studies, we identified 15 domains of care important to people with MS and 12 domains important to caregivers. QoL measures differed markedly in their coverage of these care domains. Moreover, each measure fulfilled some but not all criteria of validity, reliability, responsiveness, and appropriateness. Further work is needed to clarify the domains of care relevant to people with severe MS, and to measure health-related QoL in this population.
Mult Scler
1352-4585 (Print)
Publication year:
Symptom status:
Cognitive/mental state
Emotional state
Physical state
Functional status:
Physical functioning
Social functioning
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:
Non-patient Reported Outcome
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
2 - Interviews
6 - Clinical rating scales
7 - Observations
CMSCI - Coping with MS Caregiving Inventory
COOP/WONCA charts - COOP/WONCA Functional Healh assessment charts   
DIP - Disability and Impact Profile
EQ-5D - EuroQoL-5 Dimensions   
FAMS - Functional Assessment of Multiple Sclerosis
FIS / FFSS - Fatigue Impact Scale (FIS) or Fisk Fatigue Severity Score (FFSS)
F-QoL-I - Farmer Quality of Life Index
FSQ - Functional Status Questionnaire
FSS - Krupp Fatigue Severity Scale
GHQ - General Health Questionnaire (versions: original = GHQ-60; GHQ-12; GHQ-20; GHQ-28; GHQW-30; GHQ-36)
GSS - General Social Survey
HAQUAMS - Hamburg Quality of Life Questionnaire in Multiple Sclerosis
HRQOL-MS - Health-Related Quality Of Life questionnaire for Multiple Sclerosis
IIRS - Illness Intrusiveness Rating Scale
LHS - London Handicap Scale   
LLQ - Laman & Lankhorst Questionnaire
LMSQoL - Leeds Multiple Sclerosis Quality of Life Scale
LSS - Life Situation Survey
MHI - Mental Health Inventory (verisons: MHI-5 ; MHI-5 items; MHI-38 - MHI 38 items)
MRD - Minimal Record of Disability
MS ADL Scales - Multiple Sclerosis Activities of Daily Living Scales
MSIS-29 - Multiple Sclerosis Impact Scale   
MSQLI - Multiple Sclerosis Quality of Life Inventory
MSQoL-54 - Multiple Sclerosis Quality of Life-54 Instrument (versions: MSQoL-SV; eMSQOL-SF)
MSSE - Multiple Sclerosis Self-Efficacy Scale
NEI VFQ - National Eye Institute Visual Function Questionaire (versions: NEI VFQ-9 items)
NHP - Nottingham Health Profile   
PGI - Patient General Index
PS-MS - Performance Scales for Multiple Sclerosis
QLS - Quality of Life Scale
QOLQ for MS - Quality of Life Questionnaire for Multiple Sclerosis
Quality of Life Index Multiple Sclerosis Version III
SEIQoL - Schedule for the Evaluation of Individual Quality of Life (versions: SEIQoL-DW - SEIQoL Direct Weighting)
SF-36 - 36-item Short Form Health Survey [alias: RAND-36][alias: Medical Outcomes Study (MOS) SF-36]]    |  | also see:
SI-MS - Symptom Inventory for Multiple Sclerosis
SIP - Sickness Impact Profile (versions: SIP-8; SIP-68; SIP-136; SIP-SV; UKSIP)