A Population-Based Investigation of Health-Care Needs and Preferences in American Adults With Multiple Sclerosis

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.