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多发性硬化症复发:临床医生和患者访谈的定性发现。

Multiple sclerosis relapse: Qualitative findings from clinician and patient interviews.

机构信息

Evidera, Bethesda, MD, USA.

Formerly employed by Evidera, Bethesda, MD, USA.

出版信息

Mult Scler Relat Disord. 2019 Jan;27:139-146. doi: 10.1016/j.msard.2018.09.029. Epub 2018 Sep 26.

Abstract

BACKGROUND

In patients with relapsing forms of multiple sclerosis (MS), relapses are often unrecognized. These missed relapses have broad implications for the conduct of clinical trials as well as for the care and prognosis of people with multiple sclerosis (MS). With the ultimate goal of developing new methods to identify relapse, the purpose of this qualitative research with patients and clinicians was to examine the definition, symptoms, and impact of relapse.

METHODS

This qualitative study involved semi-structured interviews with clinicians specializing in MS and people with relapsing-remitting (RR) MS. A brief literature review was conducted to inform the development of interview guides. Qualitative data were gathered from 10 clinicians in a series of individual interviews and one focus group, followed by a series of interviews with 20 patients. Thematic analysis was conducted using ATLAS.ti to identify concepts emerging from the interviews.

RESULTS

Both clinicians and people with MS tend to describe classic neurologic symptoms that are confirmable on exam as indicative of relapses (e.g., sensory changes, vision issues, and walking difficulties), while also acknowledging that several less quantifiable symptoms are common (e.g., fatigue, pain, and cognitive issues). Patients described far-reaching impacts of relapse beyond just the quantifiable manifestations of the disease evaluated by commonly-used measures of MS severity and disability.

CONCLUSION

MS relapses, which have substantial impact on patient functioning, appear to include symptoms beyond those in typical definitions of relapse. Incorporating such constructs into new measures of relapse could lead to improved recognition of relapse episodes.

摘要

背景

在多发性硬化症(MS)的复发型患者中,复发往往未被识别。这些漏诊的复发对临床试验的开展以及多发性硬化症(MS)患者的护理和预后都有广泛的影响。为了开发新的方法来识别复发,本项针对患者和临床医生的定性研究旨在检查复发的定义、症状和影响。

方法

这项定性研究包括对专门从事 MS 治疗的临床医生和复发缓解型(RR)MS 患者进行半结构化访谈。进行了简短的文献回顾,为访谈指南的制定提供信息。通过一系列访谈收集了来自 10 名临床医生的定性数据,包括一次专题小组讨论和一系列访谈,随后对 20 名患者进行了访谈。使用 ATLAS.ti 进行主题分析,以确定访谈中出现的概念。

结果

临床医生和 MS 患者往往都将可通过检查确认的典型神经症状描述为复发的指征(例如感觉改变、视力问题和行走困难),同时也承认一些较难量化的症状很常见(例如疲劳、疼痛和认知问题)。患者描述了复发对其功能的深远影响,这些影响超出了常用的 MS 严重程度和残疾评估指标所评估的疾病的可量化表现。

结论

对患者功能有重大影响的 MS 复发似乎包括典型复发定义之外的症状。将这些结构纳入新的复发评估指标中可能会提高对复发发作的识别。

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