Adelphi Values, Adelphi Mill, Grimshaw Lane, Bollington, SK10 5JB, Cheshire, UK.
Novartis Pharma AG, 4002, Basel, Switzerland.
Patient. 2023 Jul;16(4):345-357. doi: 10.1007/s40271-023-00617-y. Epub 2023 Apr 5.
The aim of this study was to explore the experiences, values and preferences of people living with relapsing multiple sclerosis (PLwRMS) focusing on their treatments and what drives their treatment preferences.
In-depth, semi-structured, qualitative telephone interviews were conducted using a purposive sampling approach with 72 PLwRMS and 12 health care professionals (HCPs, MS specialist neurologists and nurses) from the United Kingdom, United States, Australia and Canada. Concept elicitation questioning was used to elicit PLwRMS' attitudes, beliefs and preferences towards features of disease-modifying treatments. Interviews with HCPs were conducted to inform on HCPs' experiences of treating PLwRMS. Responses were audio recorded and transcribed verbatim and then subjected to thematic analysis.
Participants discussed numerous concepts that were important to them when making treatment decisions. Levels of importance participants placed on each concept, as well as reasons underpinning importance, varied substantially. The concepts with the greatest variability in terms of how much PLwRMS found them to be important in their decision-making process were mode of administration, speed of treatment effect, impact on reproduction and parenthood, impact on work and social life, patient engagement in decision making, and cost of treatment to the participant. Findings also demonstrated high variability in what participants described as their ideal treatment and the most important features a treatment should have. HCP findings provided clinical context for the treatment decision-making process and supported patient findings.
Building upon previous stated preference research, this study highlighted the importance of qualitative research in understanding what drives patient preferences. Characterized by the heterogeneity of the RMS patient experience, findings indicate the nature of treatment decisions in RMS to be highly individualized, and the subjective relative importance placed on different treatment factors by PLwRMS to vary. Such qualitative patient preference evidence could offer valuable and supplementary insights, alongside quantitative data, to inform decision making related to RMS treatment.
本研究旨在探讨复发型多发性硬化症患者（PLwRMS）的经历、价值观和偏好，重点关注他们的治疗方法以及驱动他们治疗偏好的因素。
采用目的抽样法，对来自英国、美国、澳大利亚和加拿大的 72 名 PLwRMS 和 12 名医疗保健专业人员（MS 专科神经病学家和护士）进行了深入的半结构化定性电话访谈。使用概念启发式问题来引出 PLwRMS 对疾病修饰治疗特征的态度、信念和偏好。对 HCP 的访谈旨在了解 HCP 治疗 PLwRMS 的经验。访谈内容被录音并逐字转录，然后进行主题分析。
参与者讨论了许多在做出治疗决策时对他们很重要的概念。参与者对每个概念的重视程度以及支持重视的原因存在很大差异。在参与者的决策过程中，在重要性方面存在最大差异的概念是给药方式、治疗效果的速度、对生殖和生育的影响、对工作和社会生活的影响、患者在决策中的参与程度以及治疗对参与者的成本。研究结果还表明，参与者对他们认为理想的治疗方法以及治疗应该具有的最重要特征存在很大差异。HCP 的研究结果为治疗决策过程提供了临床背景，并支持了患者的研究结果。
在之前的陈述偏好研究的基础上，本研究强调了定性研究在理解患者偏好驱动因素方面的重要性。研究结果表明，RMS 患者的体验存在异质性，这表明 RMS 治疗决策的性质高度个体化，并且 PLwRMS 对不同治疗因素的相对重要性存在差异。这种定性的患者偏好证据可以提供有价值的补充见解，与定量数据一起，为 RMS 治疗相关的决策提供信息。
