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Relapsing-Remitting Multiple Sclerosis Patients Experience with Natalizumab

机译:纳他珠单抗复发缓解型多发性硬化症患者的经验

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摘要

This phenomenological investigation was undertaken to gain a better understanding of multiple sclerosis (MS) patients' experience with natalizumab (Tysabri; Biogen Idec Inc, Cambridge, MA) treatment and its impact on their quality of life (QOL). Twenty MS patients who were receiving natalizumab treatment were recruited by the physicians, nurse practitioners, nurses, and social worker of the William C. Baird Multiple Sclerosis Center in Buffalo, New York, between March 2009 and November 2009. Patients were invited to participate if they had relapsing-remitting MS, had received at least six treatments of natalizumab, and could articulate their experience. An interviewer obtained informed consent, gathered basic demographic information, and then tape-recorded the participants' accounts of their experience with natalizumab. The audio-recorded interviews were transcribed and de-identified before being submitted to the investigators for analysis. The Atlas.ti qualitative data analysis program (Scolari, Berlin, Germany) was used to manage the data. Patients found natalizumab easy to tolerate and effective; moreover, they described improvement in their QOL. Patients must weigh the benefits of control of their MS against the increased risk of developing progressive multifocal leukoencephalopathy with natalizumab treatment. Information from this study will be used to educate professionals involved in MS patient care as well as patients and families considering treatment with natalizumab.
机译:进行这项现象学研究的目的是为了更好地了解多发性硬化(MS)患者接受那他珠单抗(Tysabri; Biogen Idec Inc,Cambridge,MA)的治疗及其对他们生活质量的影响(QOL)。 2009年3月至2009年11月之间,纽约布法罗的William C. Baird多发性硬化症中心的医生,护士,护士和社会工作者招募了20名接受那他珠单抗治疗的MS患者。他们患有复发缓解型MS,至少接受过6种那他珠单抗的治疗,并且可以表达他们的经验。一名访调员获得了知情同意,收集了基本的人口统计学信息,然后录音记录了参与者关于那他珠单抗治疗的经历。录音采访被转录和取消身份识别,然后再提交给调查人员进行分析。使用Atlas.ti定性数据分析程序(位于德国柏林的Scolari)来管理数据。患者发现那他珠单抗易于耐受且有效;此外,他们描述了他们的QOL的提高。患者必须权衡控制其MS的益处与那他珠单抗治疗导致进行性多灶性白质脑病的风险增加。该研究的信息将用于教育参与MS患者护理的专业人员以及考虑使用那他珠单抗治疗的患者和家庭。

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