A health-related quality of life measure for multiple sclerosis
Abstract
The need for measures of health-related quality of life (HRQOL) for clinical effectiveness research and for quality of care research, particularly for chronic diseases, is increasingly recognized. We assessed a measure of HRQOL for people with multiple sclerosis, a chronic neurological condition. We used the RAND 36-Item Health Survey 1.0 (aka SF-36) as a generic core measure, to enable comparisons of HRQOL of patients with multiple sclerosis to those of other patient populations and to the general population. To enhance comparisons within groups of multiple sclerosis patients, these items were supplemented with 18 additional items in the areas of health distress (four items), sexual function (four items), satisfaction with sexual function (one item), overall quality of life (two items), cognitive function (four items), energy (one item), pain (one item), and social function (one item). The final measure, the Multiple Sclerosis Quality of Life (MSQOL)-54 Instrument, contains 52 items distributed into 12 scales, and two single items. Internal consistency reliability estimates for the 12 multi-item scales ranged from 0.75 to 0.96 in a sample of 179 patients with multiple sclerosis. Test-retest intraclass correlation coefficients ranged from 0.66 to 0.96. Exploratory factor analysis confirmed two underlying dimensions of physical health and mental health. Construct validity was supported by significant associates between MSQOL-54 scales and degree of multiple sclerosis symptom severity in the prior year, level of ambulation, employment limitations due to health, admission to hospital in the previous year, and depressive symptoms.
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The Multiple Sclerosis Quality of Life-54 has well documented content, construct and discriminative validity and reliability.
“The MSQOL-54 has well documented content, construct and discriminative validity and reliability [68, 69].”
The most commonly used measurement tools were the 12-Item Short Form Survey (n = 6 studies) and the EQ-5D (n = 6 studies), followed by the Multiple Sclerosis Quality of Life Instrument, Satisfaction with Life Scale and the World Health Organization Quality Of Life measure (each used in n = 4 studies).
“The most commonly used measurement tools were the 12-Item Short Form Survey 92 (n = 6 studies) and the EQ-5D 94 (n = 6 studies), followed by the Multiple Sclerosis Quality of Life Instrument, 95 Satisfaction with Life Scale 96 and the World Health Organization Quality Of Life measure 99 (each used in n = 4 studies).”
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- Authors
- Vickrey, B. G., Hays, R. D., Harooni, R., Myers, L. W., & Ellison, G. W.
- Affiliations
- University of California, Los Angeles (US)
- RAND Corporation (US)
- Tel Aviv University (IL)
- Venue
- Quality of Life Research
- Published
- 1995-06
- Volume
- 4
- Issue
- 3
- Pages
- 187-206
- ISSN
- 0962-9343 (ISSN-L)
- 1573-2649
- OpenAlex
- W1998609863
- Cited by
- 1,132
- References
- 51
- Citations by year
- 2026: 45 · 2025: 60 · 2024: 66 · 2023: 61 · 2022: 57 · 2021: 72 · 2020: 56 · 2019: 47 · 2018: 34 · 2017: 53 · 2016: 50 · 2015: 51 · 2014: 34 · 2013: 46 · 2012: 35
- FWCI
- 5.33
- Type
- journal article
- Language
- en
- Open access
- closed
- Licence
- www.springer.com/tdm (tdm)
- Locations
- Quality of Life Research (publishedVersion)
- PubMed (publishedVersion)
- Funders
- National Institutes of Health (1k08ns001669-01)
- National Institute of Neurological Disorders and Stroke (K08 NS01669-02)
- Topics
- Health Sciences › Medicine › Pathology and Forensic Medicine › Multiple Sclerosis Research Studies
- Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Keywords
- multiple sclerosis, health-related quality of life, MSQOL-54, SF-36, patient-reported outcome measures, sexual function, cognitive function, energy, pain, social function, depressive symptoms, symptom severity, chronic neurological disease
- MeSH terms
- Activities of Daily Living, Adult, Aged, Female, Humans, Libido, Male, Mental Processes, Middle Aged, Multiple Sclerosis, Quality of Life, Surveys and Questionnaires, Sexual Behavior, Social Adjustment, Stress, Psychological, Reproducibility of Results, Comorbidity
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