© 2009 American Academy of Neurology
From the Rocky Mountain Neurological Associates (J.F.F.), Salt Lake City, UT; and Hope MS Center (D.W.B.), Knoxville, TN.
Address correspondence and reprint requests to Dr. John F. Foley, 370 East 9th Avenue, Suite 106, Salt Lake City, UT 84103.
Although our understanding of multiple sclerosis (MS) has grown exponentially in the past century and a half, there is still some divergence between physicians’ perceptions of effects of MS on patients and those of the patients themselves. This article examines current practices in MS assessment and clinical trial design, highlighting certain deficiencies associated with commonly used measurement techniques (e.g., the Expanded Disability Status Scale and MRI) that are reflective of these discrepancies. In particular, the authors note that there is only minimal clinicalawareness of the effects of MS on patient quality of life (QoL). We posit that QoL elements including impaired cognition, fatigue, pain, a variety of visual disturbances, depression, and degrading social function may have at least as much impact on people with MS as ambulatory issues. And because QoL measures often do not correlate with Expanded Disability Status Scale or MRI findings, we recommend that QoL be assessed independently. Various validatedmeasures do exist to assess QoL elements, which are outlined here, along with thoughts on how to incorporate these into regular patient management visits. Ultimately, we believe that expanding on the traditionally accepted definitions of "functionality" and "efficacy" will allow for the adoption of a more holistic picture of MS and its impact.
Supported by an independent grant from Biogen Idec.
Disclosure: Dr. Foley serves on the scientific advisory board for Biogen Idec; he has received honoraria from Teva Neuroscience (for patient education programs), Biogen Idec (for patient and physician education programs) and from Genentech (for physician consulting); he is on the speakers’ bureau for Teva Neuroscience and Biogen Idec; he has received research support from Biogen Idec. Dr. Brandes serves on the advisory board and has received funding for travel from Biogen Idec, Teva Neuroscience, and the National MS Society; he has received honoraria and is on the speakers’ bureau for Biogen Idec, Teva Neuroscience, Pfizer, and Bayer; he has receive research support from the Northridge Foundation for Neurological Research and Education.
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