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

Abstract

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.

Prioritizing the healthcare access concerns of Canadians with MS

“…PwMS placed highest importance on healthcare provider interactions, including active communication, respect and shared decision making. This focus is in accordance with findings internationally 15 , 16 and previous work by our group 7 . Interestingly, participants indicated the highest level of satisfaction with these items, suggesting that patient-centered care 17 , 18 reforms may be taking hold.…”

“…This finding may explain why over one third of participants reported wanting to see their neurologist more often but had difficulty booking appointments, further Canadian MS clinics follow practice of one annual visit per person. 21 Limited access to MS neurological care has been described internationally 9 which led many to seek care from non-specialist providers including general neurologists and family physicians, 16 which is synonymous to our findings. These findings may explain why the highest concern of participants was the availability of healthcare providers with MS-related knowledge in their community.…”

Is it worth it?: The experiences of persons with multiple sclerosis as they access health care to manage their condition

“…Low availability of specialized care led many participants to feel that they had to rely on their family physicians, who possessed little knowledge of MS. This concern has been previously reported in Canada and internationally 15,35,36,47,48 . Many participants felt that a heavy reliance on primary care was detrimental to their health and limited their management and treatment options.…”

“…The findings also suggest that Ontarians with MS continue to experience unmet needs and dissatisfaction with health-care services, which may be explained by their experiences of accessing health care. Studies examining access to care for people with MS have attributed unmet needs to traditional dimensions of affordability, accommodation and accessibility 5,35,36 . The participants in our study also described these dimensions of access; however, they emphasized the importance of patient-provider interactions in fulfilling their care needs, consistent with research conducted in the UK 15 .…”

Information and resources important to the quality of life of people living with multiple sclerosis

“…Some researchers have focused on needs in specific domains, such as mental health (Marrie et al, 2019) and health care (e.g. Chiu et al, 2017Chiu et al, , 2018Chiu et al, , 2019Kinyanjui et al, 2018), while other needs assessments have had a broader scope, comprehensively exploring community-based, vocational, social, and other support needs (e.g. European MS Platform, 2004;Forbes et al, 2007;Hepworth & Harrison, 2004;Kersten et al, 2000;Koopman et al, 2006;MacLurg et al, 2005).…”