Abstract:

Objective To construct a symptom management journey map for adult patients with generalized myasthenia gravis（gMG），revealing their tasks，emotions，and pain points throughout the diagnosis，hospitalization，and home management stages，and to provide a basis for optimizing nursing care. Methods A descriptive qualitative study was conducted from October 2024 to August 2025，involving semi-structured interviews with 15 adult gMG patients recruited from the neurology department of a tertiary hospital in Jinan，China. Data were analyzed using conventional content analysis to extract themes and develop the patient journey map. Results The patient journey comprised 3 stages，including assessment and diagnosis，inpatient treatment，and home self-management. Across the 3 dimensions of tasks，emotions，and pain points，38 themes were identified. Patients experienced key tasks such as disease recognition，diagnostic confirmation，treatment decision-making，medication use，and follow-up arrangements，accompanied by emotions including helplessness，anxiety，fear，and anticipation. Major pain points were diagnostic delays，inappropriate initial department selection，and limited healthcare accessibility. Conclusion Symptom management among adult gMG patients demonstrates clear stage-specific and complex characteristics，with evolving needs in physiological，psychological，and self-management domains. The journey map provides a visual framework to guide nursing practice，promote multidisciplinary collaboration，and support precise interventions. Future efforts should leverage digital and intelligent tools to achieve the whole course of disease nursing management and improve patients’ quality of life and treatment adherence.

Key words: Myasthenia Gravis, Journey Mapping, Symptom Management, Nursing Care

摘要：

目的 构建成人全身型重症肌无力（generalized myasthenia gravis，gMG）患者症状管理旅程地图，揭示其在诊断、住院及居家管理过程中的任务、情绪与痛点，为优化护理服务提供依据。方法 采用描述性质性研究，于2024年10月—2025年8月选取济南市某三级甲等医院15例成人gMG患者，进行半结构式访谈，运用传统内容分析法提炼主题并绘制旅程地图。结果 患者旅程地图包括评估诊断期、住院治疗期和居家自我管理期3个阶段，从任务、情绪、痛点3个维度共提炼出38个主题。患者经历识别疾病、诊断确认、方案决策、药物使用与复诊安排等关键任务，伴随无助、焦虑、恐惧、期待等情绪。主要痛点集中于诊断延误、初诊科室选择不当及医疗可及性受限等方面。结论 成人gMG患者症状管理具有明显阶段性与复杂性，生理、心理及自我管理需求呈动态变化。旅程地图可为护理提供可视化参考，促进多学科协作与精准干预。未来应借助数字化与智能化工具，实现全病程护理，提升患者的生活质量与治疗依从性。

关键词: 重症肌无力, 旅程地图, 症状管理, 护理