Patient Member of the MS in the 21st Century Steering Group, Southampton, UK.
Department of Clinical Neurological Sciences, Western University, London, ON, Canada; Canada AND University of Calgary, Hotchkiss Brain Institute, Calgary, AB, Canada.
Mult Scler Relat Disord. 2024 Jul;87:105631. doi: 10.1016/j.msard.2024.105631. Epub 2024 May 10.
Cognitive impairment can considerably impact the work life of people who have multiple sclerosis (MS). Cognitive symptoms are associated with an increased likelihood of unemployment, changes in employment and decreased working hours. This qualitative interview-based study aims to gather real-word experiences and perspectives from both people living with MS and healthcare professionals, to explore how cognitive symptoms are experienced in the workplace, how their impact is addressed, and what can be done to support people in managing and minimizing this impact on employment.
Semi-structured, one-to-one interviews were conducted with people living with MS who experience cognitive symptoms, and with healthcare professionals working in MS care. Participants were recruited from a healthcare market research agency based in the United States. The data obtained from the interviews were subsequently analysed using a Grounded Theory method, in order to identify the core themes that form the basis of this paper.
A total of 20 participants (n = 10 people living with MS; n = 10 healthcare professionals) from the United States were interviewed. Overall, 9 themes were identified from the raw data, which were grouped into three core themes describing the perspectives and experiences reported by both people living with MS and healthcare professionals: (1) The implications of cognitive symptoms on work; (2) Challenges in addressing cognitive impairment and its impact on work in MS care; (3) Strategies and support for managing the impact of cognitive symptoms.
The real-world insights of PwMS and HCPs gained from this qualitative study show that a multi-faceted approach to addressing cognitive impairment and its impact on the employment of PwMS is required. Workplace adjustments can range from self-implemented changes to changes put in place by employers to accommodate the various ways in which cognitive symptoms may impact a person's work. This study provides valuable information on how people living with MS can be affected by cognitive symptoms in the context of their employment; furthermore, that preparing early when possible and maintaining a proactive approach to managing their impacts on work are important for maintaining a good quality of life.
认知障碍会极大地影响多发性硬化症（MS）患者的工作生活。认知症状与失业、工作变动和工作时间减少的可能性增加有关。这项基于定性访谈的研究旨在从患有 MS 的患者和医疗保健专业人员那里收集真实的经验和观点，探讨认知症状在工作场所的表现方式、其影响的处理方式，以及如何为患者提供支持以管理和最小化对就业的影响。
对患有 MS 且存在认知症状的患者以及从事 MS 护理的医疗保健专业人员进行了半结构化的一对一访谈。参与者是从美国一家医疗保健市场研究机构招募的。从访谈中获得的数据随后使用扎根理论方法进行分析，以确定构成本文基础的核心主题。
共有 20 名参与者（n = 10 名患有 MS 的患者；n = 10 名医疗保健专业人员）来自美国接受了访谈。总体而言，从原始数据中确定了 9 个主题，这些主题被分为三个核心主题，描述了患有 MS 的患者和医疗保健专业人员报告的观点和经验：（1）认知症状对工作的影响；（2）在 MS 护理中解决认知障碍及其对工作的影响方面面临的挑战；（3）管理认知症状影响的策略和支持。
从这项定性研究中获得的 MS 患者和医疗保健专业人员的真实见解表明，需要采取多方面的方法来解决认知障碍及其对 MS 患者就业的影响。工作场所的调整范围可以从个人实施的变化到雇主为适应认知症状可能对个人工作产生的各种影响而进行的变化。本研究提供了有关认知症状如何在就业背景下影响 MS 患者的宝贵信息；此外，尽可能提前做好准备并采取积极主动的方法来管理其对工作的影响对于维持良好的生活质量非常重要。
