Comparison of patient-reported outcome measures in multiple sclerosis

Personalized treatment is highly desirable in multiple sclerosis (MS). We believe that multidisciplinary measurements including clinical, functional and patient-reported outcome measures in combination with extensive patient profiling can enhance personalized treatment and rehabilitation strategies. We elaborate on four reasons behind this statement: (1) MS disease activity and progression are complex and multidimensional concepts in nature and thereby defy a one-size-fits-all description, (2) functioning, progression, treatment, and rehabilitation effects are interdependent and should be investigated together, (3) personalized healthcare is based on the dynamics of system biology and on technology that confirms a patient’s fundamental biology and (4) inclusion of patient-reported outcome measures can facilitate patient-relevant healthcare. We discuss currently available multidisciplinary MS data initiatives and introduce joint actions to further increase the overall success. With this topical review, we hope to drive the MS community to invest in expanding towards more multidisciplinary and longitudinal data collection.

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Patient reported outcome measures of upper limb function in multiple sclerosis: A critical overview

Multiple Sclerosis Journal ◽

10.1177/1352458518809294 ◽

2018 ◽

Vol 24 (14) ◽

pp. 1792-1794 ◽

Cited By ~ 2

Author(s):

Ilse Lamers ◽

Peter Feys

Keyword(s):

Multiple Sclerosis ◽

Outcome Measures ◽

Upper Limb ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Limb Function ◽

Upper Limb Function ◽

Patient Reported ◽

Critical Overview

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Assessment of computer adaptive testing version of the Neuro-QOL for people with multiple sclerosis

Multiple Sclerosis Journal ◽

10.1177/1352458518810159 ◽

2018 ◽

Vol 25 (13) ◽

pp. 1791-1799 ◽

Cited By ~ 1

Author(s):

Brian C Healy ◽

Jonathan Zurawski ◽

Cindy T Gonzalez ◽

Tanuja Chitnis ◽

Howard L Weiner ◽

...

Keyword(s):

Multiple Sclerosis ◽

Outcome Measures ◽

Computerized Adaptive Testing ◽

Short Form ◽

Patient Reported Outcome Measures ◽

Adaptive Testing ◽

Patient Reported Outcome ◽

Longitudinal Change ◽

Sf 36 ◽

Patient Reported

Background: To date, the computerized adaptive testing (CAT) version of the Neuro-quality of life (QOL) has not been assessed in a large sample of people with multiple sclerosis (MS). Objective: The aim of this study was to assess the associations between the CAT version of Neuro-QOL and other clinical and patient-reported outcome measures. Methods: Subjects ( n = 364) enrolled in SysteMS completed the CAT version of the Neuro-QOL and the 36-Item Short Form Survey (SF-36) within 4 weeks of a clinical exam that included the Multiple Sclerosis Functional Composite-4 (MSFC-4). The correlations between the Neuro-QOL domains and the MSFC-4 subscores and the SF-36 scores were calculated. The changes over time in the Neuro-QOL and other measures were also examined. Results: The lower extremity functioning score of the Neuro-QOL showed the highest correlations with MSFC-4 components including Timed 25-Foot Walk, 9-Hole Peg Test, and cognitive score. The expected domains of the Neuro-QOL showed high correlations with the SF-36 subscores, and some Neuro-QOL domains were associated with many SF-36 subscores. There was limited longitudinal change on the Neuro-QOL domains over 12 months, and the change was not associated with change on other measures. Conclusion: The CAT version of the Neuro-QOL shows many of the expected associations with clinical and patient-reported outcome measures.

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Commentary on ‘Disability outcome measures in multiple sclerosis clinical trials’

Multiple Sclerosis Journal ◽

10.1177/1352458512457847 ◽

2012 ◽

Vol 18 (12) ◽

pp. 1718-1720 ◽

Cited By ~ 9

Author(s):

J Gareth Noble ◽

Lisa A Osborne ◽

Kerina H Jones ◽

Rod M Middleton ◽

David V Ford

Keyword(s):

Multiple Sclerosis ◽

Clinical Trials ◽

Outcome Measures ◽

Well Being ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Health Technologies ◽

Additional Information ◽

Patient Reported ◽

Disability Outcome

In order to fully understand and explore the effectiveness of any intervention for the management of multiple sclerosis (MS), it is important to have robust, valid, reliable, and universally applied measures. The recent article, ‘Disability outcome measures in multiple sclerosis clinical trials’ by Cohen, Reingold, Polman and Wolinsky (2012), explores this issue in regards to the effective measurement of MS-related disability, and the utilisation of patient-reported outcome measures, whilst highlighting the need for collaboration between the academic and clinical communities. Although it is important to examine disability measures, it is also equally important to recognise that physical function is only one aspect of a person’s experience; for example, quality of life and psychological well-being are also important aspects to assess. The application of e-health technologies and patient registers could be a useful method of gaining additional information, using patient-reported outcomes. This commentary explores these issues in relation to points raised by the Cohen et al. paper.

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