Department of Neurology and Neurosurgery, McGill University, Montreal, QC, Canada/Montreal Neurological Institute, Montreal, QC, Canada.
McGill University, Montreal, QC, Canada.
Mult Scler. 2020 Jun;26(7):837-842. doi: 10.1177/1352458519845107. Epub 2019 May 10.
Patients with advanced, disabling multiple sclerosis (MS) have few effective treatment options. Little is known about the role that patients and their care providers want their neurologist to fill in this situation.
To better understand the role that patients with disabling MS and their care providers want their neurologist to have in their care.
In this exploratory qualitative study, we conducted semi-structured interviews with 29 participants (19 patients with severe disability due to MS and 10 care providers). Interview transcripts were analyzed using inductive thematic analysis.
Participants identified three main roles for their neurologist: a source of hope for therapeutic advances, an educator about the disease and its management, and a source of support.
Despite sustaining a level of disability that may be refractory to standard medical therapy, patients with disabling MS and care providers continue to value certain roles of their neurologist. The neurologist's role as a source of hope and support in particular has not received enough attention in the literature.
患有晚期、致残性多发性硬化症（MS）的患者几乎没有有效的治疗选择。对于患者及其护理人员希望他们的神经科医生在这种情况下扮演的角色，我们知之甚少。
为了更好地了解致残性 MS 患者及其护理人员希望他们的神经科医生在其护理中扮演的角色。
在这项探索性定性研究中，我们对 29 名参与者（19 名因 MS 导致严重残疾的患者和 10 名护理人员）进行了半结构化访谈。使用归纳主题分析对访谈记录进行分析。
参与者确定了他们的神经科医生的三个主要角色：治疗进展的希望源泉、疾病及其管理的教育者、以及支持来源。
尽管残疾程度可能对标准医学治疗具有抗性，但致残性 MS 患者及其护理人员仍然重视他们的神经科医生的某些角色。神经科医生作为希望和支持的源泉的角色在文献中并没有得到足够的重视。
