Loss of mobility and the patient burden of multiple sclerosis: expert opinion on relevance to daily clinical practice
Background: Multiple sclerosis (MS) is a chronic neurologic disease associated with gait impairment that adversely affects quality of life (QOL). Data are lacking on the impact of these impairments from the perspectives of people with MS and care partners of a person with MS, defined as individuals caring for a friend or family member with MS.
Walking impairment is one of the most visible and important manifestations of multiple sclerosis. MS Studies have consistently found that walking impairment occurs early during MS, and recent studies suggest that the greatest impact on socioeconomic outcomes occurs during the early stages of disability. Walking impairment is often perceived by the affected individual prior to its clinical manifestation, supporting the need for patient education and walking assessments that may be self-administered. Patient perceptions should lead to pre-emptive management strategies to maintain independence and delay the need for walking assistive devices or caregiving. Patient management should also include regular quantitative and qualitative assessments of walking by physicians or other clinicians, such as nurse practitioners, physician assistants, or physical therapists.
Methods: In January and February 2008, online surveys were conducted by Harris Interactive® (HI) on behalf of Acorda Therapeutics, Inc. and the National MS Society (USA) to explore the impact of difficulty walking (defined as trouble walking at least twice a week and/or an inability to walk at least twice a week due to MS) from the perspectives of people with MS and care partners of a person with MS. The study population was drawn from pre-existing panels, generated by HI and rewards market research, of self-reported people with MS, care partners of a person with MS, or adults living in the same household as a person with MS. Panel members were invited to participate by e-mail, and their status/eligibility was verified with screening questions. Survey results were weighted for demographic factors and propensity to be online. Percentages were adjusted to account for acceptance of multiple responses and exclusion of non-responses.
PubMed searches retrieved recent studies (November 2008 to August 2013) evaluating the contribution of walking impairment to the burden of MS.
Results: The respondents included 1011 people with MS and 317 care partners. Demographic and MS disease characteristics in the people with MS sample were similar to those of people with MS in the general population. Among people with MS, 41% reported having difficulty walking, including 13% with inability to walk at least twice a week. Of those with difficulty walking, 70% said it was the most challenging aspect of having MS. Of those with inability to walk at least twice a week, 74% said it disrupted their daily lives. Only 34% of people with MS with difficulty walking were employed. Communication between people with MS and physicians regarding difficulty walking was suboptimal; 39% of all people with MS said they never or rarely discussed it with their doctor. Significant percentages of all care partners experienced reduced QOL and socioeconomic status in association with caring for a person with MS.
Several objective measures of walking are available, such as measures of walking speed (Timed 25-Foot Walk Test) and distance (2- or 6-Minute Walk); however, these measures may have practical considerations such as time and space. Patient-reported measures, which should have a low administration burden, include walking-specific (Multiple Sclerosis Walking Scale) and health-related quality-of-life outcome assessments.
Conclusions: Difficulty walking is a common impairment in people with MS, with adverse effects on the QOL of people with MS and care partners of a person with MS.
When used in tandem, patient-reported and objective measures can help monitor changes and facilitate patient–clinician discussions of problems, management strategies, and long-term goals related to walking impairment.
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