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

ABSTRACT

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.