Perceived facilitators, needs, and barriers to health related quality of life in people with multiple sclerosis: a qualitative investigation

Abstract

Background Multiple sclerosis (MS) is a chronic progressive neurological disease that influences an individual's physical, mental, emotional, and social functioning, otherwise known as health-related quality of life (HRQOL). To fully capture the impacts of MS on HRQOL, perspectives from the lived experience should be investigated. Objective The purpose of this study was to describe, in people with relapsing–remitting multiple sclerosis (RRMS), (1) the health and wellness needs and facilitators perceived to influence HRQOL, (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 phenomenological theory. Semi-structured interviews were conducted until data saturation was reached (n = 15). The data were analyzed using a thematic analysis approach. Results Five themes emerged as facilitators of HRQOL; mental/emotional health, knowledge about MS, family/peer support, lifestyle behaviors, and social engagement. Identified barriers to achieving better HRQOL included limited access to specialized care, lack of communication/ empathy from providers, lack of comprehensive care, challenges caused by MS symptoms, and difficulty navigating the healthcare and insurance landscape. Conclusions Study participants described mental health and lifestyle behaviors as the primary promoters of overall HRQOL. Access to dietary guidelines, exercise instruction, and education about living healthy with MS were also identified as positive contributors to overall QOL. When these positive contributors are limited or absent, HRQOL was reported to decrease.

Dietary Modification Combined with Nutrition Education and Counseling for Metabolic Comorbidities in Multiple Sclerosis: Implications for Clinical Practice and Research

“…A large body of qualitative evidence has explored barriers to achieving self-management behavioral changes, including a healthy diet in people with MS. Barriers identified were related to a lack of motivation, person-centered support, and communication from HCPs [ 57 , 58 ]. Additional barriers to adopting healthy dietary choices include a lack of cooking skills and dietary knowledge [ 59 ] as well as online dietary misinformation [ 26 ].…”

Interventions to Improve Quality of Life in Multiple Sclerosis: New Opportunities and Key Talking Points

“…[8][9][10] This is due to the myriad of symptoms pwMS encounter, such as; visual changes, weakness, spasticity, paresthesia, impaired proprioception, balance difficulties, pain, fatigue, bladder/bowel changes, and cognitive impairments, among others. [11][12][13][14] Health-related quality of life is a multi-dimensional construct that includes physical, mental, emotional, and social health. 11,15,16 Health-related quality of life is notably also lower in pwMS than population norms.…”

“…The increased attention to health-related quality of life has facilitated a notable shift in the views of what both providers and pwMS view as living well with MS. [17][18][19] In 2018, after exploring the traffic coming onto the National MS Society's website and noticing that individuals were going to the website for health and wellness strategies, the National MS Society formed a wellness research group to foster research promoting optimal health for pwMS. Today living well with MS is measured not just by an absence of relapses or progression of disability but rather by the measure of a person's overall quality of life living with MS. 12,20,21 Numerous studies of varied rigor have aimed to measure the influence of non-pharmacological interventions on quality of life or health-related quality of life for pwMS. [22][23][24][25][26][27] Non-pharmacological interventions include physical activity, dietary changes, psychosocial support, cognitive behavioral therapy, exercise, and fatigue management.…”

“…The increased attention to health-related quality of life has facilitated a notable shift in the views of what both providers and pwMS view as living well with MS. 17–19 In 2018, after exploring the traffic coming onto the National MS Society’s website and noticing that individuals were going to the website for health and wellness strategies, the National MS Society formed a wellness research group to foster research promoting optimal health for pwMS. Today living well with MS is measured not just by an absence of relapses or progression of disability but rather by the measure of a person’s overall quality of life living with MS. 12 , 20 , 21 …”