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.
ABSTRACT
PURPOSE: The purposes of this investigation were to (1) identify the domains of health-related quality of life most impacted in people with RRMS, (2) compare the health-related QOL in people with RRMS to general population norms, and (3) to describe subgroups within the RRMS population that have similar health and wellness needs. METHODS: This was a cross-sectional QOL investigation of adults with RRMS. The SF-36v2 survey and demographic information were collected electronically via Qualtrics. Participants (n = 120) were recruited through social media and the National Multiple Sclerosis Society of the United States. One-sample Z-tests were completed for all subscales, and component mean scores to determine if a difference between the sample and population norms existed. RESULTS: All values of z were statistically significant, p < .01, for all subscale and composite scores. Social function, physical function, and the mental health component scores had the lowest subscale means. A first stage depression screen revealed that 49% of the surveyed population were at risk for depression, compared to 18% in the general population. Further dividing the sample into years since MS diagnosis, the recently diagnosed group had 61% at risk for depression. CONCLUSIONS: Challenges related to the mental health of individuals with RRMS are influencing overall health-related QOL. Early on in the disease course (0-3 years), mental health affected QOL more than physical health. More attention must be given to the nonphysical domains of health to advance the QOL for people with RRMS.
ABSTRACT
The crystallographic and magnetic behaviors of (Tb1-xNax)MnO3-y (0
