Giovannoni Gavin, Alvarez Enrique, Tutton Ellen, Hoffmann Olaf, Xu Yan, Vermersch Patrick, Oreja-Guevara Celia, Trojano Maria, Gold Ralf, Robles-Cedeño René, Khwaja Mudeer, Stadler Bianca, Vandercappellen Jo, Ziemssen Tjalf
Blizard Institute, Barts and The London School of Medicine and Dentistry, Queen Mary University of London, London, UK.
University of Colorado School of Medicine, Aurora, CO, USA.
Digit Health. 2023 May 9;9:20552076231173531. doi: 10.1177/20552076231173531. eCollection 2023 Jan-Dec.
We describe the development of Your Multiple Sclerosis Questionnaire and present the real-world usability testing results of Your Multiple Sclerosis Questionnaire.
The Your Multiple Sclerosis Questionnaire tool was developed in four stages to collect feedback from people living with MS (plwMS), patient organizations, and clinicians on content, format, and applicability. To assess its usability, 13 clinicians across 7 countries completed an online survey after using the tool with plwMS in a total of 261 consultations from September, 2020 to July, 2021.
The initial Your Multiple Sclerosis Questionnaire version was based on findings from previous research developing MSProDiscuss™, a clinician-completed tool. Subsequently, insights from plwMS obtained during cognitive debriefing, patient councils and advisory boards led to changes including the addition of mood and sexual problems and the definition of relapse. All 13 clinicians completed the individual survey, whereas 10 clinicians completed the final survey. Clinicians "strongly agreed" or "agreed" that Your Multiple Sclerosis Questionnaire was easy to use and understand (98.5%; 257/261 patient consultations). The clinicians were willing to use the tool again with the same patient (98.1%; 256/261 patient consultations). All clinicians who completed the final survey (100%; 10/10) reported the tool to have a positive influence on their clinical practice, helped patients engage with their MS, facilitated discussion with patients, and complemented neurological assessment.
Your Multiple Sclerosis Questionnaire benefits both plwMS and clinicians by facilitating a structured discussion and engaging the plwMS to self-monitor and self-manage. Your Multiple Sclerosis Questionnaire is compatible with telemedicine practice and integration of the tool into electronic health records would enable tracking of the disease evolution and individual monitoring of MS symptoms over time.
我们描述了“您的多发性硬化症问卷”的开发过程，并展示了该问卷在现实世界中的可用性测试结果。
“您的多发性硬化症问卷”工具分四个阶段开发，以收集多发性硬化症患者、患者组织和临床医生对内容、格式和适用性的反馈。为评估其可用性，来自7个国家的13名临床医生在2020年9月至2021年7月期间与多发性硬化症患者进行的总共261次会诊中使用该工具后，完成了一项在线调查。
最初的“您的多发性硬化症问卷”版本基于之前开发MSProDiscuss™（一种由临床医生填写的工具）的研究结果。随后，在认知反馈、患者委员会和咨询委员会期间从多发性硬化症患者那里获得的见解导致了一些变化，包括增加了情绪和性问题以及复发的定义。所有13名临床医生完成了个人调查，而10名临床医生完成了最终调查。临床医生“强烈同意”或“同意”“您的多发性硬化症问卷”易于使用和理解（98.5%；257/261次患者会诊）。临床医生愿意再次与同一名患者使用该工具（98.1%；256/261次患者会诊）。所有完成最终调查的临床医生（100%；10/10）报告该工具对他们的临床实践有积极影响，帮助患者应对其多发性硬化症，促进与患者的讨论，并补充了神经学评估。
“您的多发性硬化症问卷”通过促进结构化讨论并促使多发性硬化症患者进行自我监测和自我管理，使患者和临床医生都受益。“您的多发性硬化症问卷”与远程医疗实践兼容，将该工具整合到电子健康记录中能够跟踪疾病进展并长期对多发性硬化症症状进行个体监测。
