Abstract：
OBJECTIVE: Idiopathic subglottic stenosis is a rare disease, and time to diagnosis is often prolonged. In the United States, some estimate it takes an average of 9 years for patients with similar rare disease to be diagnosed. Patient experience during this period is termed the diagnostic odyssey. The aim of this study is to use qualitative methods grounded in behavioral-ecological conceptual frameworks to identify drivers of diagnostic odyssey length that can help inform efforts to improve health care for iSGS patients.
METHODS: Qualitative study using semi-structured interviews. Setting consisted of participants who were recruited from those enrolled in a large, prospective multicenter trial. We use directed content analysis to analyze qualitative semi-structured interviews with iSGS patients focusing on their pathways to diagnosis.
RESULTS: Overall, 30 patients with iSGS underwent semi-structured interviews. The patient-reported median time to diagnosis was 21 months. On average, the participants visited four different health care providers. Specialists were most likely to make an appropriate referral to otolaryngology that ended in diagnosis. However, when primary care providers referred to otolaryngology, patients experienced a shorter diagnostic odyssey. The most important behavioral-ecological factors in accelerating diagnosis were strong social support for the patient and providers\' willingness to refer.
CONCLUSIONS: Several factors affected time to diagnosis for iSGS patients. Patient social capital was a catalyst in decreasing time to diagnosis. Patient-reported medical paternalism and gatekeeping limited specialty care referrals extended diagnostic odysseys. Additional research is needed to understand the effect of patient-provider and provider-provider relationships on time to diagnosis for patients with iSGS.
METHODS: 4 Laryngoscope, 134:815-824, 2024.
METHODS: Qualitative study using semi-structured interviews. Setting consisted of participants who were recruited from those enrolled in a large, prospective multicenter trial. We use directed content analysis to analyze qualitative semi-structured interviews with iSGS patients focusing on their pathways to diagnosis.
RESULTS: Overall, 30 patients with iSGS underwent semi-structured interviews. The patient-reported median time to diagnosis was 21 months. On average, the participants visited four different health care providers. Specialists were most likely to make an appropriate referral to otolaryngology that ended in diagnosis. However, when primary care providers referred to otolaryngology, patients experienced a shorter diagnostic odyssey. The most important behavioral-ecological factors in accelerating diagnosis were strong social support for the patient and providers\' willingness to refer.
CONCLUSIONS: Several factors affected time to diagnosis for iSGS patients. Patient social capital was a catalyst in decreasing time to diagnosis. Patient-reported medical paternalism and gatekeeping limited specialty care referrals extended diagnostic odysseys. Additional research is needed to understand the effect of patient-provider and provider-provider relationships on time to diagnosis for patients with iSGS.
METHODS: 4 Laryngoscope, 134:815-824, 2024.
摘要：
目的：特发性声门下狭窄是一种罕见的疾病，诊断时间往往延长。在美国,一些人估计，患有类似罕见疾病的患者平均需要9年才能被诊断出来。在此期间的患者经历称为诊断冒险。这项研究的目的是使用基于行为生态学概念框架的定性方法来确定诊断奥德赛长度的驱动因素，这些因素可以帮助为改善iSGS患者的医疗保健提供信息。
方法：使用半结构化访谈的定性研究。设置由参与者组成，这些参与者是从大型注册的参与者中招募的，前瞻性多中心试验。我们使用定向内容分析对iSGS患者进行定性半结构化访谈，重点关注他们的诊断途径。
结果：总体而言，30名iSGS患者接受了半结构化访谈。患者报告的中位诊断时间为21个月。平均而言,参与者访问了四个不同的卫生保健提供者.专家最有可能进行适当的转诊，以诊断结束。然而,当初级保健提供者提到耳鼻喉科时，患者经历了较短的诊断冒险。加速诊断的最重要的行为生态因素是患者和提供者愿意转诊的强大社会支持。
结论：几个因素影响iSGS患者的诊断时间。患者社会资本是缩短诊断时间的催化剂。患者报告的医疗父爱和门卫有限的专业护理推荐扩展了诊断错误。需要更多的研究来了解患者-提供者和提供者-提供者关系对iSGS患者诊断时间的影响。
方法：4喉镜，2023年。
方法：使用半结构化访谈的定性研究。设置由参与者组成，这些参与者是从大型注册的参与者中招募的，前瞻性多中心试验。我们使用定向内容分析对iSGS患者进行定性半结构化访谈，重点关注他们的诊断途径。
结果：总体而言，30名iSGS患者接受了半结构化访谈。患者报告的中位诊断时间为21个月。平均而言,参与者访问了四个不同的卫生保健提供者.专家最有可能进行适当的转诊，以诊断结束。然而,当初级保健提供者提到耳鼻喉科时，患者经历了较短的诊断冒险。加速诊断的最重要的行为生态因素是患者和提供者愿意转诊的强大社会支持。
结论：几个因素影响iSGS患者的诊断时间。患者社会资本是缩短诊断时间的催化剂。患者报告的医疗父爱和门卫有限的专业护理推荐扩展了诊断错误。需要更多的研究来了解患者-提供者和提供者-提供者关系对iSGS患者诊断时间的影响。
方法：4喉镜，2023年。
