Responsiveness of patient reported outcome measures in multiple sclerosis relapses: the REMS study
Open accessAbstract
OBJECTIVES: To assess the responsiveness of the three most used patient reported multiple sclerosis (MS) specific questionnaires: the Functional Assessment of MS (FAMS), the MS Impact Scale (MSIS-29) and the 54 item MS Quality of Life (MSQOL-54). DESIGN: Prospective multicentre longitudinal study on 104 MS patients treated with intravenous steroids for clinical exacerbation. METHODS: Patient reported data, Expanded Disability Status Scale (EDSS) score and clinical information were collected at admission and 8 weeks later. "Internal" (distribution based) responsiveness was assessed by standardised response means (SRM). "External" (anchor based) responsiveness was assessed by receiver operating characteristic (ROC) curves in relation to corresponding changes in a pre-specified reference measure (anchor). The pre-specified anchor was patients' self-reported recovery assessed on a 5 point Likert scale. RESULTS: SRM was 0.39 for FAMS, 0.58 for MSIS-29 physical scale, 0.45 for MSIS-29 psychological scale, 0.71 for MSQOL-54 physical health composite and 0.57 for MSQOL-54 mental health composite. Seventy-three patients (70%) reported they had improved; physicians agreed substantially with patient assessments (kappa statistic 0.70, 95% CI 0.54 to 0.85). Areas under ROC curves differed significantly from 0.50 only for the MSIS-29 and MSQOL-54 scales where areas ranged from 0.65 (95% CI 0.53 to 0.76) for the MSIS-29 psychological scale to 0.70 (95% CI 0.58 to 0.81) for the MSQOL-54 mental health composite. Areas under ROC curves assessed using a physician based anchor were similar to the patient based areas. CONCLUSIONS: The responsiveness of the MS specific instruments was less than ideal. The MSIS-29 and MSQOL-54 were significantly more responsive, using both distribution based and anchor based approaches, than FAMS, and should be preferred in longitudinal studies.
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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].”
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- Authors
- Giordano, A., Pucci, E., Naldi, P., Mendozzi, L., Milanese, C., Tronci, F., Leone, M., Mascoli, N., La Mantia, L., Giuliani, G., & Solari, A.
- Affiliations
- Fondazione IRCCS Istituto Neurologico Carlo Besta (IT)
- Ospedale di Macerata (IT)
- Azienda Ospedaliero Universitaria Maggiore della Carita (IT)
- Don Carlo Gnocchi Foundation (IT)
- Corresponding author
- Solari, A
- Venue
- Journal of Neurology, Neurosurgery & Psychiatry
- Publisher
- BMJ
- Published
- 2009-05-13
- Volume
- 80
- Issue
- 9
- Pages
- 1023-1028
- ISSN
- 0022-3050 (ISSN-L)
- OpenAlex
- W2153061458
- Cited by
- 54
- References
- 33
- Citations by year
- 2026: 2 · 2025: 1 · 2023: 1 · 2022: 3 · 2021: 7 · 2020: 1 · 2019: 2 · 2018: 2 · 2017: 3 · 2016: 3 · 2015: 7 · 2014: 5 · 2013: 8 · 2012: 2
- FWCI
- 2.10
- Type
- journal article
- Language
- en
- Open access
- green
- hal.science
- Licence
- other-oa
- Locations
- Journal of Neurology Neurosurgery & Psychiatry (publishedVersion)
- PubMed (publishedVersion)
- HAL (submittedVersion, other-oa)
- HighWire Press Open Archive (submittedVersion)
- Trinity's Access to Research Output (TARA) (Trinity College Dublin) (submittedVersion)
- 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
- Social Sciences › Decision Sciences › Management Science and Operations Research › Psychometric Methodologies and Testing
- Keywords
- multiple sclerosis, relapse, patient-reported outcome measures, responsiveness, MSIS-29, MSQOL-54, intravenous corticosteroids, Expanded Disability Status Scale, physician agreement
- MeSH terms
- Adolescent, Adult, Anti-Inflammatory Agents, Disability Evaluation, Emotions, Female, Follow-Up Studies, Health Status, Humans, Injections, Intravenous, Longitudinal Studies, Male, Mental Health, Middle Aged, Multiple Sclerosis, Prospective Studies, Quality of Life, Recurrence, ROC Curve, Steroids, Treatment Outcome, Young Adult
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
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