复发性多发性硬化症(RMS)患者经历的个体差异:多发性硬化症患者治疗偏好驱动因素的多国定性探索。

IF 3.4 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Patient-Patient Centered Outcomes Research Pub Date : 2023-07-01 DOI:10.1007/s40271-023-00617-y
Sophi Tatlock, Kate Sully, Anjali Batish, Chelsea Finbow, William Neill, Carol Lines, Roisin Brennan, Nicholas Adlard, Tamara Backhouse
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引用次数: 1

摘要

目的:本研究的目的是探讨复发性多发性硬化症(PLwRMS)患者在治疗方面的经历、价值观和偏好,以及是什么驱动了他们的治疗偏好。方法:采用有目的抽样方法,对来自英国、美国、澳大利亚和加拿大的72名PLwRMS和12名卫生保健专业人员(HCPs、MS专科神经科医生和护士)进行深度、半结构化、定性电话访谈。采用概念启发提问法,探讨PLwRMS对疾病改善治疗特征的态度、信念和偏好。对医护人员进行访谈,以了解医护人员治疗PLwRMS的经验。将答复录音并逐字抄录,然后进行专题分析。结果:参与者讨论了许多概念,这些概念在做出治疗决定时对他们很重要。参与者对每个概念的重视程度,以及支持重要性的原因,都有很大的不同。就PLwRMS发现他们在决策过程中的重要性而言,变化最大的概念是管理模式,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,患者参与决策,以及参与者的治疗成本。研究结果还表明,在参与者描述的理想治疗和治疗应该具有的最重要特征方面,存在很大的可变性。HCP结果为治疗决策过程提供了临床背景,并支持了患者的发现。结论:基于先前陈述的偏好研究,本研究强调了定性研究在理解驱动患者偏好的因素方面的重要性。以RMS患者经历的异质性为特征,研究结果表明,RMS治疗决策的本质是高度个性化的,PLwRMS对不同治疗因素的主观相对重要性各不相同。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。
本文章由计算机程序翻译,如有差异,请以英文原文为准。

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Individual Differences in the Patient Experience of Relapsing Multiple Sclerosis (RMS): A Multi-Country Qualitative Exploration of Drivers of Treatment Preferences Among People Living with RMS.

Aims: 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.

Methods: 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.

Results: 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.

Conclusions: 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.

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来源期刊
Patient-Patient Centered Outcomes Research
Patient-Patient Centered Outcomes Research HEALTH CARE SCIENCES & SERVICES-
CiteScore
6.60
自引率
8.30%
发文量
44
审稿时长
>12 weeks
期刊介绍: The Patient provides a venue for scientifically rigorous, timely, and relevant research to promote the development, evaluation and implementation of therapies, technologies, and innovations that will enhance the patient experience. It is an international forum for research that advances and/or applies qualitative or quantitative methods to promote the generation, synthesis, or interpretation of evidence. The journal has specific interest in receiving original research, reviews and commentaries related to qualitative and mixed methods research, stated-preference methods, patient reported outcomes, and shared decision making. Advances in regulatory science, patient-focused drug development, patient-centered benefit-risk and health technology assessment will also be considered. Additional digital features (including animated abstracts, video abstracts, slide decks, audio slides, instructional videos, infographics, podcasts and animations) can be published with articles; these are designed to increase the visibility, readership and educational value of the journal’s content. In addition, articles published in The Patient may be accompanied by plain language summaries to assist readers who have some knowledge of, but not in-depth expertise in, the area to understand important medical advances. All manuscripts are subject to peer review by international experts.
期刊最新文献
Reporting of Patient and Public Involvement in Technology Appraisal and Assessment Reports: A Rapid Scoping Review. 15th Meeting of the International Academy of Health Preference Research. Patients' Preferences for Sphingosine-1-Phosphate Receptor Modulators in Multiple Sclerosis Based on Clinical Management Considerations: A Choice Experiment. The Role of Patient-Reported Outcomes to Measure Treatment Satisfaction in Drug Development. Young People's Barriers and Facilitators of Engagement with Web-Based Mental Health Interventions for Anxiety and Depression: A Qualitative Study.
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