在日本,患有特定难治疾病的患者的情感旅程
Hiroyuki Tanaka1,2, Mikiko Shimaoka1
1Graduate School of Health Innovation, Kanagawa University of Human Services, Kawasaki City, Japan.
Intractable & rare diseases research
|February 26, 2024
概括
患有难治性疾病的患者在延迟诊断时经历了显著的痛苦. 快速,准确的诊断是关键的未满足需求,在确认后导致缓解和积极的情绪状态.
科学领域:
- 医学社会学 医学社会学
- 患者体验研究 研究研究
- 疾病心理学 疾病心理学
背景情况:
- 延迟诊断对患有难治性疾病的患者构成重大挑战.
- 了解情绪轨迹和未满足的需求对于改善患者护理至关重要.
研究的目的:
- 绘制特定难治疾病的日本患者的情感旅程.
- 为了确定因诊断延迟而产生的未满足需求.
主要方法:
- 在11种难以治愈的疾病中,对179名患者进行了基于网络的调查.
- 患者在诊断旅程的不同阶段报告了10分级的情绪状态.
主要成果:
- 从症状出现到初次诊所访问的时期显示出最负面的情绪 (丧,恐惧,焦虑).
- 积极的情绪随着专门医院的咨询而增加,并在确诊,治疗和护理时达到顶峰.
- 在诊断时,缓解是最常见的情绪 (41.9%),其次是焦虑和震惊.
结论:
- 患有难以治愈的疾病的患者在确诊之前经历了最大的心理痛苦.
- 及时和准确的诊断是患有难以治疗疾病的患者的关键未满足需求.
- 解决诊断延迟问题可以显著改善患者的情感福祉和护理结果.
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