Health and Wellness Needs Reported to Influence Quality of Life in People with Relapsing-Remitting Multiple Sclerosis, a Qualitative Investigation

Background: Multiple sclerosis (MS) is a chronic progressive neurological disease diagnosed commonly between 20-50 years of age, with over 2.3 million people living with MS worldwide.1,2 Approximately 85% of people diagnosed with MS initially present with relapsing-remitting MS (RRMS).3–6 RRMS is characterized by clearly defined periods of disease activity, known as exacerbations, followed by periods with partial to complete recovery of symptoms that repeats over time.3,6,7 As a result of this pattern, individuals living with MS experience different health and wellness needs over their lives that directly influence their quality of life (QOL).8 Current literature also appears to be limited when considering the patients’ points of view and their identified health and wellness needs.13 One strategy to close this gap is to look at QOL from the lived experience perspective. A recent study examined the traffic on the National Multiple Sclerosis Society’s (NMSS) website and social media platforms to identify what content people coming to their web pages were interested in the most. The most frequently searched terms during the study period were diet, exercise, and emotional issues. This demonstrates people with MS are interested in a vast array of different aspects of health and wellness.14 Objectives: The purpose of this study was to describe, in people with RRMS, (1) the health and wellness needs perceived to influence QOL, (2) determine which health needs are not being met, and (3) identify barriers to meeting health and wellness needs. Methods: Participants with RRMS were recruited from a more extensive study for this cross-sectional, qualitative investigation guided by the phenomenological theory. Semi-structured interviews were conducted until data saturation was reached (n=15). The data were analyzed using a thematic content analysis approach. Results: Seven themes emerged from the data specifically related to factors that were perceived to influence QOL; mental and emotional health, education, family and peer support, employment, lifestyle behaviors, physical therapy, and social engagement. An eight them merged that centered on perceived barriers to improving QOL. The perceived barriers identified include limited access to specialized care, poor communication and empathy, lack of comprehensive care, challenges due to MS symptoms, and difficulty navigating the healthcare and insurance landscape. Conclusions: People with RRMS view health and QOL through a multifaceted lens that consists of a broad overall perspective of what it means to live well with MS. QOL was portrayed as rooted in the physical, mental, and social realms of health by all participants. Although physical function was present in the interview data and had clear effects on QOL, this was not an area of focus for the participants. Mental and emotional health was described as having a large influence on QOL while simultaneously being described as the area of greatest need. .

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