Qualitative study on the fear of disease progression or recurrence in middle-aged and young patients with myasthenia gravis
中青年重症肌无力患者疾病加重或复发恐惧的质性研究

摘要

目的 探讨中青年重症肌无力（MG）患者疾病加重或复发恐惧的质性研究。方法 采用现象学研究法进行研究，选取本院2023年3月-2024年6月收治的8例中青年MG患者，按Colaizzi 7步分析法对8例患者的访谈资料进行整理归纳。结果 本次访谈资料共提炼出4个主题，包括疾病认知程度不足引起恐惧、治疗预后效果不确定性加剧恐惧、社会支持欠缺放大恐惧、日常生活能力下降强化恐惧。结论 中青年MG患者普遍存在疾病加重或复发恐惧心理，主要受患者自身对疾病认知、治疗预后、社会支持、生活状态等多维度因素影响，需要提供针对性干预措施，改善患者负面心理，提高其生活质量。

Abstract

Objective To explore the qualitative study of disease progression or recurrence fear in middle-aged and young patients with myasthenia gravis (MG).
Methods The phenomenological research method was used for the study. Eight middle-aged and young MG patients admitted to our hospital from March 2023 to June 2024 were selected, and the interview data of the eight patients were sorted and summarized according to the Colaizzi 7-step analysis method.
Results A total of four themes were extracted from the interview data, including fear caused by insufficient disease awareness, fear exacerbated by uncertainty in treatment prognosis, fear amplified by lack of social support, and fear reinforced by decreased daily living abilities.
Conclusion   Middle aged and young MG patients generally have a fear of disease aggravation or recurrence, which is mainly influenced by multidimensional factors such as patients' own disease cognition, treatment prognosis, social support, and living status. Targeted intervention measures need to be provided to improve patients' negative psychology and enhance their quality of life.