Independent Researcher, Leeds, UK.
Shift.ms, Platform, New Station Street, Leeds, LS1 4JB, UK.
Mult Scler Relat Disord. 2021 Nov;56:103259. doi: 10.1016/j.msard.2021.103259. Epub 2021 Sep 16.
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.
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.
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.
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.
多发性硬化症 (MS) 复发与残疾增加、生活质量下降和负面心理社会影响有关。然而，它们常常未被识别；多发性硬化症患者 (MSers) 在自我识别潜在复发或寻求支持方面可能面临障碍。慈善机构 Shift.ms 试图更好地了解 1）MSers 在自我识别潜在复发方面的挑战，2）MSers 在何处寻求潜在复发的支持，以及 3）对复发的预期对 MSers 幸福感和日常生活的影响。
Shift.ms 开发了一个患者视角的 8 个问题试点调查（包括李克特式、多项选择和可选的自由文本回复），并将其分发给 Shift.ms 的国际在线社区（n=20,052）。使用描述性定量分析以及对定性自由文本回复的内容分析和主题分析。
1737 名 MSers 做出了回应。近三分之一（29.9%）的 MSers 表示，他们需要 24 小时或更短的时间来自我识别潜在的复发，而超过一半（54.5%）表示在 48 小时内识别出复发；55%的 MSers 认为复发分类的“至少 24 小时”临床标准是合适的。自我识别复发的挑战包括背景症状或感染的混淆、复发症状的可变性以及 MS 的个体性。疲劳被报告为最常见的复发症状（75%），然而疲劳也是最容易被误认为是复发的症状（40%）。自我识别复发的障碍包括 MS 诊断后时间较短和对复发分类缺乏共识。受访者表示，他们最常从医疗保健专业人员 (HCPs)（37.1%）、家人/朋友（32.1%）或根本不寻求（16.9%）寻求复发支持/建议。参与者认为，症状的严重程度而不是时间标准（即 24 小时标准）在是否寻求支持潜在复发方面可能发挥更关键的作用。寻求支持/建议的障碍包括 HCP 建议的可变性和被否定的感觉。对复发的预期会对 MSers 的幸福感产生负面影响；导致活动参与减少，并制定调整/应对策略。复发的触发因素包括压力、自我护理减少、感染/疾病；78.5%的人报告压力或焦虑引发了复发。
这些发现强调了 MSers 在自我识别复发、获得支持的障碍以及对复发预期的影响方面面临的困难。它们还强调了改善 MSers 和 HCP 之间沟通、对话和双向教育的机会，以帮助优化患者获得复发支持和干预的机会。
