Manzano Ana, Eskytė Ieva, Ford Helen L, Bekker Hilary L, Potrata Barbara, Chataway Jeremy, Schmierer Klaus, Pepper George, Meads David, Webb Edward Jd, Pavitt Sue H
School of Sociology & Social Policy, Room 11.20 Social Sciences Building, University of Leeds, Leeds LS2 9JT, United Kingdom.
School of Law, University of Leeds, Leeds, United Kingdom.
Patient Educ Couns. 2020 May 13. doi: 10.1016/j.pec.2020.05.014.
Disease-Modifying Treatments (DMTs) have contributed to a new clinical landscape for people with relapsing-remitting multiple sclerosis (pwRRMS). A challenge for services is how to support DMT decisions with changing clinical evidence, and differing treatment goals. This article investigates how pwRRMS weigh up the pros and cons of DMTs by examining how communication at the point of diagnosis is related to DMT decisions.
30 semi-structured interviews with pwRRMS in England were conducted using a theoretical purposive sampling strategy and analysed using the thematic approach to answer: How does communication about RRMS during diagnosis influence decisions about when and which DMT to choose?
Three meta-themes were identified: a) communication context; b) delayed communication and hope for people with "non-active" RRMS at diagnosis; c) people with "active" RRMS at diagnosis: Conflated, generic, selective and simplified information CONCLUSION: At the time of diagnosis, patient-physician interactions are characterised by emotions and information complexity. Clinical, social and psychological DMT filtering mechanisms are activated during first decisions. Personalised evidence is needed to make informed decisions.
Patient decision aids should consider first and consecutive decisions and should not encourage a false sense of large choices that could add to decision anxiety.
疾病修正治疗（DMTs）为复发缓解型多发性硬化症患者（pwRRMS）带来了新的临床局面。医疗服务面临的一个挑战是如何根据不断变化的临床证据和不同的治疗目标来支持DMT决策。本文通过研究诊断时的沟通与DMT决策之间的关系，探讨pwRRMS如何权衡DMT的利弊。
采用理论目的抽样策略，对英国的30名pwRRMS患者进行了半结构式访谈，并采用主题分析法进行分析，以回答以下问题：诊断期间关于复发缓解型多发性硬化症的沟通如何影响何时以及选择哪种DMT的决策？
确定了三个元主题：a）沟通背景；b）诊断时针对“非活动性”RRMS患者的沟通延迟与希望；c）诊断时“活动性”RRMS患者：混合、通用、选择性和简化的信息。结论：在诊断时，医患互动的特点是情绪和信息复杂性。在首次决策过程中，临床、社会和心理DMT筛选机制被激活。需要个性化的证据来做出明智的决策。
患者决策辅助工具应考虑首次决策和后续决策，不应鼓励可能增加决策焦虑的错误的大量选择感。
