诊断不确定性对罕见病患者的经济负担
Lukas Willmen1, Lukas Völkel1, Tina Willmen2
1Department of Nephrology, Hannover Medical School, Hanover, Germany.
BMC health services research
|November 13, 2024
概括
诊断罕见疾病会给患者带来巨大的收入损失. 早期诊断,可能有助于人工智能决策支持系统,可以大幅减少这些经济影响,提高工作绩效.
科学领域:
- 罕见疾病诊断 罕见疾病诊断
- 卫生经济学 卫生经济学
- 医疗保健中的人工智能
背景情况:
- 迟迟诊断罕见疾病会导致长期的痛苦和经济困难.
- 患有罕见疾病的患者在获得及时和适当的治疗方面面临挑战.
- 对于患有罕见疾病的患者来说,经济后果很大,影响了收入和工作表现.
研究的目的:
- 调查罕见疾病对患者收入和工作表现的影响.
- 评估AI在诊断中的潜力,以减轻与罕见疾病相关的经济损失.
主要方法:
- 对71名罕见炎症系统性疾病患者的工作表现和收入的分析.
- 在患者采访期间使用了世卫组织健康和工作绩效问卷 (HPQ).
- 在四个关键点收集数据:症状发作,建议诊断,实际诊断和当前状态.
主要成果:
- 由于工作表现下降或缺勤,月度净收入平均下降了5.32%.
- 正确的诊断导致收入回收率为11.92%.
- 早期使用诊断决策支持系统 (DDSS) 可能会将收入损失从5.32%减半至2.66%.
结论:
- 罕见疾病导致28.17%的患者损失收入,根据疾病类型而有所不同.
- 关节,肌肉和结合组织疾病显示出比罕见的血管类疾病更明显的收入损失.
- 诊断决策支持系统 (DDSS) 显示出通过早期诊断来减少经济影响的潜力.
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