Burtchell Jeri, Clemmons Daisy, Clemmons Joann, Sabutis Tim, Rosenberg Adeline, Graves Jennifer, Sweeney Michael L, Kramer John, Ziehn Marina, Brown Brandon, Weiss Jamie L, Obeidat Ahmed Z
Patient Author, HealthiVibe, a Division of Corrona, LLC, Arlington, VA, USA.
Patient Author, Partners in Research, East Palatka, FL, USA.
Neurol Ther. 2022 Sep;11(3):955-979. doi: 10.1007/s40120-022-00349-5. Epub 2022 May 24.
The mechanisms of action of disease-modifying therapies (DMTs) for multiple sclerosis (MS) are complex and involve an interplay of immune system components. People with MS (PwMS) may lack a clear understanding of the immunological pathways involved in MS and its treatment; effective communication between healthcare professionals (HCPs) and PwMS is needed to facilitate shared decision-making when discussing the disease and selecting DMTs and is particularly important in the coronavirus disease 2019 (COVID-19) era.
In this patient-authored two-part review, we performed a targeted literature search to assess the need for better communication between HCPs and PwMS regarding treatment selection, and also conducted a qualitative survey of four patient and care-partner authors to obtain insights regarding their understanding of and preferences for the treatment and management of MS.
Following a search of the Embase and MEDLINE databases using Ovid in June 2020, an analysis of 40 journal articles and conference abstracts relating to patient empowerment and decision-making in DMT selection for MS showed a preference for safety and efficacy of treatments, followed by autonomy and convenience of administration. A need for better communication between HCPs and PwMS during treatment selection to improve patient satisfaction was also identified. The open survey responses from the patient authors revealed a need for greater involvement in decision-making processes and desire for improved communication and information tools.
This targeted literature search and phenomenological review confirms PwMS preferences for empowered decision-making in disease management and treatment selection, to optimize independence, safety, and efficacy. It also identifies an unmet need for improved communication and information tools that convey MS information in a relatable manner. Furthermore, this review seeks to address this unmet need by providing plain language figures and descriptions of MS immune mechanisms that can be used to facilitate discussions between HCPs and PwMS.
用于治疗多发性硬化症（MS）的疾病修正疗法（DMTs）的作用机制复杂，涉及免疫系统各组成部分之间的相互作用。MS患者（PwMS）可能对MS及其治疗所涉及的免疫途径缺乏清晰的了解；在讨论病情和选择DMTs时，医疗保健专业人员（HCPs）与PwMS之间需要进行有效的沟通，以促进共同决策，这在2019冠状病毒病（COVID-19）时代尤为重要。
在这篇由患者撰写的两部分综述中，我们进行了有针对性的文献检索，以评估HCPs与PwMS之间就治疗选择进行更好沟通的必要性，还对四位患者及护理伙伴作者进行了定性调查，以了解他们对MS治疗和管理的理解及偏好。
2020年6月使用Ovid对Embase和MEDLINE数据库进行检索后，对40篇与MS患者在选择DMTs时的赋权和决策相关的期刊文章及会议摘要进行分析，结果显示患者更倾向于治疗的安全性和有效性，其次是给药的自主性和便利性。研究还发现，在治疗选择过程中，HCPs与PwMS之间需要更好地沟通，以提高患者满意度。患者作者的开放式调查回复表明，他们需要更多地参与决策过程，并希望改进沟通和信息工具。
这项有针对性的文献检索和现象学综述证实，PwMS在疾病管理和治疗选择中倾向于自主决策，以优化独立性、安全性和有效性。研究还发现，目前存在未满足的需求，即需要以通俗易懂的方式传达MS信息的更好的沟通和信息工具。此外，本综述旨在通过提供关于MS免疫机制的通俗易懂的图表和描述来满足这一未满足的需求，这些图表和描述可用于促进HCPs与PwMS之间的讨论。
