重症肌无力患者症状管理旅程地图的研究
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女,硕士,主管护师

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华中科技大学同济医学院附属同济医院科研基金项目(2024D23)


A journey mapping study on symptom management among patients with myasthenia gravis
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    摘要:

    目的 基于患者旅程地图识别重症肌无力患者症状管理体验与多维需求,为开展针对性症状管理提供参考。方法 采用描述性质性研究方法,以目的抽样法选取16例重症肌无力患者为研究对象,对患者进行半结构式深度访谈,运用定向内容分析法进行主题提取与分析,并绘制患者旅程地图。结果 以筛查诊断期、急性治疗期、稳定维持期及复发过渡期4个时段作为时间轴线,从任务、情绪、痛点3个维度将重症肌无力患者的症状管理归纳为早期症状识别困难、确诊路径冗长、对病因未知的紧张与猜疑等27个主题,并绘制旅程地图。结论 重症肌无力患者在不同疾病阶段的症状管理任务、情绪体验与核心痛点呈现动态变化与周期差异性,医护人员需根据各周期的需求变化,为患者提供精准化、动态化的症状管理措施,以缓解症状困扰,提升照护质量。

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    Objective To identify the symptom management experiences and multidimensional needs of patients with myasthenia gravis based on patient journey mapping, to provide a basis for developing targeted symptom management interventions. Methods A descriptive qualitative study was designed. Sixteen patients with myasthenia gravis were selected using purposive sampling method to conduct semi-structured in-depth interviews. Directed content analysis was employed for theme extraction and analysis, and patient journey maps were subsequently developed. Results Four phases including screening and diagnosis, acute treatment, stable maintenance, and relapse transition were used as the temporal framework. Across three dimensions (tasks, emotions, and pain points), 27 themes related to symptom management were identified, consisting of difficulties in early symptom recognition, prolonged diagnostic pathways, and anxiety and suspicion related to an unknown etiology etc. A comprehensive patient journey map was subsequently developed. Conclusion The tasks, emotional experiences, and pain points associated with symptom management in patients with myasthenia gravis exhibit dynamic changes and distinct variations across different phases of the disease trajectory. Healthcare professionals should tailor precise and dynamic symptom management interventions to these phase-specific needs in order to alleviate symptom distress and enhance the overall quality of care.

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沈凡,李玲,廖宗峰,徐春燕,毛李烨,张珂晗,赵园园,白佳瑶.重症肌无力患者症状管理旅程地图的研究[J].护理学杂志,2026,41(12):47-52

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  • 收稿日期:2025-11-16
  • 最后修改日期:2026-01-25
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  • 在线发布日期: 2026-07-29