导航途径,以诊断在异常性小结节下狭窄症:一个定性研究
Cara Damico Smith1, Nainika Nanda2, Kemberlee Bonnet3
1Department of Surgery, University of Wisconsin-Madison, Madison, Wisconsin, U.S.A.
The Laryngoscope
|September 23, 2023
概括
患有异常性小结节狭窄症 (iSGS) 的患者经历了长时间的诊断旅程. 强有力的社会支持和提供者愿意转诊显著缩短了像iSGS这样的罕见疾病的诊断时间.
科学领域:
- 耳鼻喉科 耳鼻喉科 耳鼻喉科
- 罕见疾病 罕见疾病
- 医疗保健服务研究 医疗服务研究
背景情况:
- 异常性小结节狭窄症 (iSGS) 是一种罕见的疾病,诊断时间较长,造成患者的重大负担.
- 罕见疾病的诊断旅程可以平均几年,影响患者健康和医疗资源利用.
研究的目的:
- 通过使用定性方法,确定异常性小结节下狭窄症诊断奥德赛长度的关键驱动因素.
- 为旨在改善医疗保健提供和减少iSGS患者诊断时间的干预措施提供信息.
主要方法:
- 使用半结构面试对30名iSGS患者进行定性研究.
- 从一个大型的,前性的多中心试验中招募的参与者.
- 用于检查患者诊断途径的定向内容分析.
主要成果:
- 诊断iSGS的中位时间为21个月,患者平均看了四个提供者.
- 专家或初级保健提供者对耳鼻喉科的适当转诊缩短了诊断旅程.
- 患者的社会支持和提供者转诊的意愿是加速诊断的关键因素.
结论:
- 患者社会资本和提供者推实践显著影响iSGS诊断旅程的长度.
- 医疗服务提供者的医疗爱护和守护可以延长诊断时间.
- 需要进一步研究iSGS诊断中的患者-提供者和提供者-提供者关系.
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