Background: Comprehensive and effective multiple sclerosis (MS) health care requires understanding of patients’ needs, preferences, and priorities. Objective: To evaluate priorities of patients with MS for their MS care. Methods: Participants included 3003 Americans with MS recruited through the National MS Society and the North American Research Committee on Multiple Sclerosis patient registry. Participants completed a comprehensive questionnaire on aspects of their health-care experiences. Results: Participants identified the top 3 health-care priorities as (1) the affordability of MS health care, (2) ensuring that non-MS health-care providers have more education about MS and how it can interact with other conditions, and (3) access to an MS center or specialized MS clinic with MS health-care professionals together in one place. Participants receiving care in an MS center rated the quality and their satisfaction with care higher than those receiving care in other settings. Although having the opportunity to evaluate their health-care quality was important to the participants, only 36.4% had been provided the opportunity in the past year. Conclusions: This study identifies health-care priorities and concerns for Americans with MS.

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There is little research delineating the healthcare and rehabilitation needs of individuals with multiple sclerosis (MS) that is based on the perspectives of those individuals themselves. The medical community is largely well-informed about disease progression, symptoms, and treatment of MS, but little is known regarding the barriers and unmet needs that individuals with MS experience in their interaction with healthcare and rehabilitation systems and providers, and in their efforts to maintain healthy, productive, and participatory lives. In this article, we provide a comprehensive summary of the most frequently identified healthcare and rehabilitation needs of individuals with MS based on a review of over 500 articles, from which 29 articles were selected for inclusion as they specifically addressed the needs or unmet healthcare and rehabilitation needs of people with MS. Based on our review, we identified 11 categories of needs, which we discuss in the context of three broad categories, including (a) emotional and psychological support, (b) healthcare and rehabilitation, and (c) transportation, home care, and financial needs.   Keywords: multiple sclerosis, health care, priorities, needs, expectations

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