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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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BACKGROUND: Multiple sclerosis (MS) is among the most prevalent chronic neurological conditions worldwide and is associated with a wide range of symptoms and psychosocial impacts. Quality of life (QOL) is recognized as a comprehensive and person-centered framework for exploring and understanding these impacts. Although there is a strong history of including people with MS in the development of health-related and patient-reported outcomes QOL instruments in MS, there have been relatively few large-scale qualitative investigations of what is important to the QOL of people with MS. As part of an ongoing evaluation by the National Multiple Sclerosis Society (NMSS), in which the NMSS is seeking to evaluate the impact of its work on the lives of people living with MS, we surveyed a sample of 748 Americans with MS about the areas of their life that are most important to their QOL. RESULTS:The results suggest that social relationships, health, independence, and participation in meaningful activities, including employment, were among their top priorities. The diversity of life areas identified underscores the importance of understanding the individual's unique priorities and experiences of QOL, and recognizing the diversity of the population. CONCLUSION: The results are discussed in terms of the implications for understanding of priorities and experiences of Americans living with MS.