Patients and Partners in Research: Patient and Caregiver Perceptions of Research Engagement and the Role of Their Psychosocial States in Participation

Multiple sclerosis (MS) is one of the most common, nontraumatic, disabling diseases diagnosed in adults. Self-empowered patients and families are valued members of the MS research team. The objective of this study was to explore patient and family perceptions of the influence of psychosocial state on their willingness to be research partners. Researchers conducted 5 focus groups with MS patients and family from the Upper Midwest Chapter of the National Multiple Sclerosis Society. The researchers asked questions addressing psychosocial factors influencing ability and willingness to work with MS researchers as partners. Relevant themes were identified including comfort level of individuals in formulating research questions, comfort level engaging in research, understanding of the meaning of research and self-perception about skills, research training, and knowledge needs. The findings of this study support the role of MS patients’ perspectives about MS, their understanding of the science of MS, and role of their psychosocial states as all these factors were patient identified as being key to their ability to be active, engaged and willing research participants.

The employment impact of the COVID-19 pandemic on Americans with MS: Preliminary analysis

BACKGROUND: The Coronavirus disease 2019 (COVID-19) pandemic has been associated with unprecedented social and economic impacts in the United States, including significant cuts to the labor force, beginning in the Spring of 2020. OBJECTIVE: In this study we examined the employment effects of the pandemic on Americans with multiple sclerosis (MS), a population that has historically experienced low rates of employment relative to the general population. METHODS: Based on a survey of a convenience sample of 69 members of the National Multiple Sclerosis Society, we examined employment, health, and economic experiences between May and August, 2020. RESULTS: The results suggest potentially significant job loss. Specifically, in the present sample approximately 20% of participants who were previously employed reported losing employment as a result of the pandemic, and approximately 40% reported other work changes. At elevated risk for job loss were those with lower levels of education, African American workers, and workers reporting Hispanic, Latinx, or Spanish origin. Almost two-thirds of the participants reported that the pandemic had affected their financial status and over half (53.6%) reported that the pandemic had affected their ability to access their MS healthcare. CONCLUSION: We discuss the implications and potentially lasting effects of the current, complex employment situation faced by Americans living with MS, and the broader considerations for vocational rehabilitation professionals.

Personal, health and function, and career maintenance factors as determinants of quality of life among employed people with multiple sclerosis

BACKGROUND: Multiple sclerosis (MS) is an intrusive disease that significantly affects labor force participation. OBJECTIVE: This study examined the extent to which factors at the personal, health and function, and environmental/career maintenance levels contribute to the predictability power for quality of life among employed people with MS. METHOD: Participants consisted of 523 members of nine National Multiple Sclerosis Society chapters representing 21 states and Washington, DC. These individuals were employed at the time of the survey, and they were primarily middle age (average age of 48 years) and Caucasian (74%). RESULTS: The final hierarchical multiple regression model explained 54 percent of the variability in participants’ quality of life scores, although none of the hypothesized personal/demographic predictors were significant. Participants who perceived better overall health and lower levels of stress, who experienced less severe cognitive and mobility-related MS symptoms, and who expressed stronger job-person matches and higher levels of job satisfaction reported higher quality of life scores than did other participants. CONCLUSIONS: The findings underscore the complexity involved in predicting perceived quality of life among employed people with MS. Implications of these findings for future research and clinical practice are discussed.

Determinants of General Satisfaction With the Employment Situation Among People With Multiple Sclerosis

BackgroundSocial and environmental participation endeavors are theorized to shape one's general satisfaction with the overall employment situation facing people with MS.ObjectiveResponding to a national survey of the employment concerns of Americans with multiple sclerosis (MS), this study examined the extent to which factors at the demographic, disease-related, and social and environmental participation levels contribute to the predictability power for general satisfaction with the employment situation for people with MS.MethodParticipants in this study consisted of 1,149 members of nine National Multiple Sclerosis Society (NMSS) chapters representing 21 states and Washington, DC. In a hierarchical multiple regression analysis, participants were mostly older (average age of 50 years) White (74%) individuals, nearly half of whom were unemployed (47%) but well educated (98% were high school graduates, 45% were college graduates).FindingsFindings underscore the complexity involved in predicting how satisfied people with MS are with their overall employment situation.ConclusionsYounger, less educated individuals with higher levels of perceived quality of life who were employed full-time and experiencing no or lower levels of cognitive impairment were more likely than other participants to be satisfied with 17 high-priority employment concerns.

Effect of whole-body cryotherapy treatments on the functional state of patients with MS (multiple sclerosis) in a Timed 25-Foot Walk Test and Hand Grip Strength Test

Introduction: Whole-body cryotherapy (WBC) is one of the main elements of comprehensive rehabilitation of patients with multiple sclerosis (MS). It is used both to improve the mental and physical condition of patients.The study attempts to assess the effect of a series of 20 daily WBC treatments on global walking function and muscle strength in patients with MS.Materials and methods: The study included 25 patients with diagnosed MS (ICD10-G35), mean age 44.58 ±12.15 years, who after a detailed medical examination were qualified to a series of 20 daily WBC treatments. Treatments lasted 2–3 min at -110°C. Before and after the series of WBC treatments, all subjects were tested for global hand grip and thumb strength using a hydraulic dynamometer (kg) for both the right and the left hands, as well as measuring the time needed to walk a distance of 7.6 metres, in accordance with the Timed 25-Foot Walk Test, a standardised diagnostic test recommended for the global assessment of walking function by the National Multiple Sclerosis Society. The obtained results were subjected to statistical analysis.Results: After the series of WBC treatments, a marginal but statistically significant increase in thumb strength was observed in the right hand (p < 0.01). Other changes in the value of handgrip and thumb strength were not statistically significant. In addition, there were no statistically significant changes in the average time needed to cover the walking distance of 7.6 metres.Conclusions: The series of 20 daily WBC treatments for patients with MS did not significantly improve global walking function, although a beneficial effect on the thumb strength of the right hand was observed.

The Multiple Sclerosis Self-Management Scale-2: Evaluation of an Updated Scale

ObjectiveThe Multiple Sclerosis Self-Management Scale (MSSM) was developed to provide a multidimensional and psychometrically sound assessment of self-management knowledge and behavior among adults with multiple sclerosis (MS). The scale was recently updated with new items to address advances in MS treatment and self-management interventions. We present results of an evaluation of these updates and the psychometric adequacy of the updated MSSM.MethodParticipants were 2,393 adults with MS recruited through the North American Research Committee on Multiple Sclerosis (NARCOMS) registry and selected chapters of the National Multiple Sclerosis Society. Participants completed the MSSM and several additional instruments of function and quality of life. A seven-factor structure of the revised MSSM (MSSM-2) was identified using exploratory and confirmatory factor analysis and the stability of the factor structure was evaluated using a cross-validation approach.ResultsFactor analysis of the updated MSSM-2 revealed seven factors. Construct validity was supported by factor analysis and correlation of the MSSM with constructs related to self-management.ConclusionThe MSSM-2 provides a brief, psychometrically sound multidimensional assessment of MS self-management for research and clinical applications.