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骨髓灰质炎的诊断和治疗 - 患者的观点:一个横截面研究
Tomasz Sobierajski1, Anetta Lasek-Bal2,3, Marek Krzystanek4
1The Center of Sociomedical Research, Faculty of Applied Social Sciences and Resocialization, University of Warsaw, Warsaw, Poland.
Frontiers in neurology
|August 21, 2023
概括
患有骨髓质疏松症 (MG) 的患者经历了诊断延迟和类固醇治疗的显著副作用. 改善后续护理和患者提供者合作对于管理MG症状和提高生活质量至关重要.
科学领域:
- 神经学 神经学
- 患者报告的结果
- 药物治疗 药物治疗
背景情况:
- 骨髓灰质炎 (MG) 是一种慢性自身免疫神经肌肉疾病.
- 了解患者对诊断和治疗的看法对于改善护理至关重要.
- 目前MG的治疗策略包括药物治疗和手术干预,如乳腺切除术.
研究的目的:
- 为了探索患者与肌痛性骨髓灰质炎 (MG) 诊断和治疗的经验.
- 确定MG的诊断过程和治疗干预措施中的挑战.
- 评估MG疗法对患者生活质量和日常活动的影响.
主要方法:
- 使用CAWI (计算机辅助网络采访) 技术进行定量调查.
- 这项研究涉及321名被诊断患有严重骨髓质疏松症的参与者.
- 收集关于诊断时间,治疗方式,副作用和治疗接受度的数据.
主要成果:
- 观察到显著的诊断延迟,30.9%的患者等待3年以上的诊断;这种延迟在女性中更长.
- 胆固醇药物被广泛使用 (最初92.9%),皮质类固醇是常见的 (45.8%开始).
- 类固醇治疗引起了影响身体健康 (55.9%),自我接受 (52%),心理健康 (47.1%) 和日常活动 (28.2%) 的显著副作用.
- 超过一半 (57.0%) 接受了乳腺切除术,72.0%的人认为他们的治疗在某种程度上控制了MG.
- 较低的治疗接受度与对非药片治疗的偏好相关 (p=0.045).
结论:
- 肌痛性骨髓灰质炎 (MG) 的诊断延迟仍然存在,特别是在女性患者中.
- 类固醇治疗虽然很常见,但与严重的不良影响有关,影响了患者福祉的多个方面.
- 建议在专业医疗保健系统内加强定期的随访和综合护理,以改善MG管理,日常功能和整体生活质量.
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