Patients' experiences of self-identification, seeking support, and anticipation of potential relapse in multiple sclerosis.

BACKGROUND: Multiple sclerosis (MS) relapses are associated with increased disability, reduced quality of life and negative psychosocial impacts. However, they often go unrecognised; people with MS (MSers) may face barriers to self-identification of relapses or seeking support for them. The charity Shift.ms sought to better understand 1) MSers' challenges in self-identifying potential relapses, 2) where MSers' seek support for potential relapses, and 3) the impact of the anticipation of relapses on MSers' wellbeing and daily living. METHODS: Shift.ms developed a patient perspective 8-question pilot survey (included likert-style, multiple-choice, and optional free-text responses) and shared it with Shift.ms' international online community (n = 20,052). Descriptive quantitative analysis, and content analysis and thematic analysis of qualitative free-text responses were used. RESULTS: 1,737 MSers responded. Just under one third (29.9%) of MSers reported that it takes them 24 h or less to self-identify a potential relapse, while more than half (54.5%) reported that identification occurs within 48 h; 55% MSers felt that the "at least 24 h" clinical criterion of relapse classification was appropriate. Challenges to relapse self-identification included confounding background symptoms or infection, variability of relapse symptoms, and individualistic nature of MS. Fatigue was reported to be the most common symptom of relapse (75%), however fatigue was also the symptom most commonly mistaken for relapse (40%). Barriers to relapse self-identification were a shorter duration since MS diagnosis and a perceived lack of consensus around relapse classification. Respondents reported they most often seek relapse support/advice from healthcare professionals (HCPs) (37.1%), family/friends (32.1%), or not at all (16.9%). Rather than temporal criteria (i.e. the 24 h criterion), participants felt that severity of symptoms could play a more critical role in whether to seek support for a potential relapse. Barriers to seeking support/advice included variability in HCP advice and feelings of invalidation. Anticipation of relapses negatively impacted MSers wellbeing; led to reduced participation in activities, and the development of adjustment/coping strategies. Relapse triggers included stress, reduced self-care, infection/illness; 78.5% reported stress or anxiety had triggered relapse. CONCLUSIONS: These findings highlight difficulties MSers face in self-identifying relapses, barriers to accessing support, and impact of anticipation of relapses. They also highlight opportunities for improved MSer and HCP communication, dialogue and two-way education to help optimise patient access to relapse support and intervention.

Psychological determinants of job retention in multiple sclerosis.

BACKGROUND: Maintaining paid work is a key issue for people with multiple sclerosis (PwMS). Different factors, including psychological attributes, can influence job retention. Understanding their role should inform potential interventions to help PwMS retain employment. OBJECTIVES: The aim of this study was to identify the key factors which improve job retention in an employed cohort of PwMS. METHODS: This three-year longitudinal study used validated self-completed measures of physical and psychological factors at four time points over 28 months. RESULTS: Of 208 employed PwMS, just over 1 in 10 was no longer working at the end of the study. Three variables were predictive of continuing employment; low 'work instability' at baseline increased the odds of job retention by a factor of 12.76; high levels of self-efficacy by a factor of 4.66 and being less than 50 years of age increased the odds of job retention by a factor of 3.90. Path analysis demonstrated the mediating role of self-efficacy between the physical impact of MS and the level of work instability at exit. CONCLUSION: Screening for work instability and self-efficacy in a clinical setting followed by appropriate interventions to increase self-efficacy and reduce work instability could aid job retention in MS.