"第二个生日"? 经过自身造血干细胞移植治疗的多发性硬化症患者的经验 - - 定性面试研究
Timo Volz1, Anna Sippel1, Felix Fischbach1,2
1Institute of Neuroimmunology and Multiple Sclerosis (INIMS), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany.
Frontiers in neurology
|May 16, 2024
概括
自主造血干细胞移植 (aHSCT) 为多发性硬化症患者提供了改变生活的体验,影响身体和心理健康. 在整个治疗过程中解决未满足的需求对于优化患者的治疗结果至关重要.
科学领域:
- 神经学 神经学
- 血液学 血液学 血液学
- 移植医学 移植医学
背景情况:
- 自主造血干细胞移植 (aHSCT) 是一种新兴的多发性硬化症 (MS) 治疗方法.
- 接受HSCT的患者遇到重大的生活挑战.
- 了解这些患者的生活经历是必不可少的.
研究的目的:
- 探索多发性硬化症 (pwMS) 患者接受aHSCT的实践经验.
- 从患者的角度确定与HSCT相关的挑战和好处.
主要方法:
- 进行了半结构面试,对12名接受HSCT的pwMS进行了半结构面试.
- 用于参与者选择的最大变异采样.
- 分析了采访成绩单以主题的方式,使用了归纳和演方法.
主要成果:
- 确定了三个关键主题:准备,程序和后处理.
- 准备工作涉及复杂的决策,组织障碍和资金问题.
- aHSCT被认为是一种改变生活的事件,伴随着身体和心理的压力,导致恢复控制的感觉;然而,治疗后的护理提出了挑战,患者希望获得更早的信息.
结论:
- aHSCT显著影响患者的身体和心理社会福祉以及对生活的看法.
- 在移植前,移植期间和移植后解决患者未满足的需求可以增强他们的体验.
- 建议对未来考虑HSCT的患者提供更好的信息.
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