在日本患有特定难治性疾病的患者中,与延迟确诊相关的挑战:一个横截面研究
Hiroyuki Tanaka1,2, Mikiko Shimaoka1
1Graduate School of Health Innovation, Kanagawa University of Human Services, Kawasaki, Kanagawa, Japan.
Intractable & rare diseases research
|November 29, 2023
概括
在日本,诊断难治性疾病的延迟源于患者和医疗保健系统的问题. 提高患者意识和获得医疗保健的机会对于及时诊断至关重要.
科学领域:
- 医学社会学 医学社会学
- 公共卫生 公共卫生
- 医疗保健服务研究 医疗服务研究
背景情况:
- 及时诊断难治性疾病对于有效管理和患者的治疗结果至关重要.
- 诊断延迟可能导致疾病进展和增加患者的痛苦.
- 了解导致诊断延迟的因素对于改善医疗保健系统至关重要.
研究的目的:
- 识别和分析导致特定难治疾病的日本患者诊断延迟的挑战.
- 调查患者相关因素,医疗保健系统问题和确诊时间之间的关系.
- 为减少诊断延迟提供基于证据的建议.
主要方法:
- 在日本,对424名被诊断患有12种特定难治疾病的患者进行了问卷调查.
- 使用统计分析,包括皮尔森的千平方测试,检查诊断延迟与各种因素之间的关联.
- 对患者报告的诊断延迟原因进行了定性分析.
主要成果:
- 在诊断延迟和从症状发作到第一次入院的时间 (p = 0.002) 和患者怀疑其病情的时间 (p < 0.001) 之间发现了显著的关联.
- 诊断延迟的主要原因包括患者的时间限制,进入医疗机构的困难,寻求医疗护理的犹以及更广泛的医疗保健系统挑战.
- 这些因素共同阻碍了患有难以治疗疾病的患者的早期确诊.
结论:
- 在日本,难治性疾病的诊断延迟是多因素的,涉及患者层面的障碍和系统性医疗保健问题.
- 提高患者对疾病的认识,并使他们能够及时寻求医疗护理是至关重要的.
- 医疗保健系统的改进是必要的,以促进早期诊断,并改善患有难治疾病的患者的护理.
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