Institute of Neuroimmunology and Multiple Sclerosis (INIMS), University Medical Center Hamburg-Eppendorf (UKE), Martinistrasse 52, 20246, Hamburg, Germany.
, Trier, Germany.
BMC Neurol. 2022 Apr 20;22(1):146. doi: 10.1186/s12883-022-02663-9.
A variety of management options (e.g., disease-modifying therapy, lifestyle interventions, rehabilitation) are available for persons with relapsing-remitting multiple sclerosis (MS). Besides coping with the diagnosis, persons with MS have to make complex decisions, e.g., regarding disease-modifying therapies. In addition to factual information, reports of patient experiences may support other patients in their decision-making. Therefore, we developed a website presenting patient experiences illustrated by video, audio and text files. This study aimed to test the acceptability and usability of a website with patient experiences with MS.
A mixed-methods approach was applied. A total of 69 participants visited the German "Patient Experiences with MS (PExMS)" website and among them, 50 persons with MS and 6 experts completed an online survey. In total, 18 participants took part in telephone interviews or focus groups. Data from the survey were analysed using descriptive statistics. Qualitative data were analysed using thematic analysis.
Both quantitative and qualitative responses suggest that the PExMS website was viewed positively by patients and experts. 94% of persons with MS agreed that the information was comprehensible and reliable. 54% felt encouraged to share their health problems with others after having studied the website. 74% claimed to use the website if they had to make a decision regarding their health. Qualitative responses deduced from the website fell into 5 key themes: (1) web design, appearance, and functionality, (2) content, (3) usability, (4) satisfaction, and (5) loyalty. The search for persons of similar age and with comparable experiences was a major driving force to navigate the website. The material on the website was perceived as diverse, covering both positive and negative experiences in daily living with MS. All participants greatly appreciated having access to other people's experiences online and judged the material on the website as particularly helpful in decision-making for disease-modifying therapies.
The findings suggest that the PExMS website might have the potential to be a useful source of audio-visual information for persons with MS. Given the lack of websites available to patients with experiential information, health care professionals may be encouraged to routinely inform patients about this website at regular appointments.
对于复发缓解型多发性硬化症（MS）患者，有多种管理选择（例如，疾病修正治疗、生活方式干预、康复）。除了应对诊断外，MS 患者还必须做出复杂的决策，例如关于疾病修正疗法的决策。除了事实信息外，患者体验报告也可能支持其他患者做出决策。因此，我们开发了一个展示 MS 患者体验的网站，其中包括视频、音频和文本文档。本研究旨在测试具有 MS 患者体验的网站的可接受性和可用性。
采用混合方法。共有 69 名参与者访问了德国的“多发性硬化症患者体验（PExMS）”网站，其中 50 名 MS 患者和 6 名专家完成了在线调查。共有 18 名参与者参加了电话访谈或焦点小组。使用描述性统计分析调查数据。使用主题分析对定性数据进行分析。
定量和定性的反馈都表明，PExMS 网站受到患者和专家的好评。94%的 MS 患者认为信息易于理解和可靠。54%的人在研究完网站后表示更愿意与他人分享自己的健康问题。74%的人声称如果他们必须就自己的健康问题做出决定，他们会使用该网站。从网站中得出的定性反馈分为 5 个关键主题：（1）网页设计、外观和功能，（2）内容，（3）可用性，（4）满意度，（5）忠诚度。寻找年龄相仿且具有类似经验的人是浏览网站的主要驱动力。网站上的内容被认为是多样化的，涵盖了日常生活中 MS 的积极和消极体验。所有参与者都非常赞赏能够在线访问其他人的体验，并认为网站上的材料在决策疾病修正疗法方面特别有帮助。
研究结果表明，PExMS 网站可能有潜力成为 MS 患者有用的视听信息来源。鉴于缺乏可供患者获取体验信息的网站，健康保健专业人员可能会被鼓励在定期预约时经常向患者介绍该网站。
