文章：

患者对肉瘤诊断的经历：诊断路径的过程映射练习

Patients’ Experiences of a Sarcoma Diagnosis: A Process Mapping Exercise of Diagnostic Pathways

原文发布日期：3 August 2023

DOI: 10.3390/cancers15153946

类型: Article

开放获取: 是

英文摘要：

Patients with sarcoma often report prolonged time to diagnosis, which is attributed to the rarity of sarcoma and the low awareness of pre-diagnostic signs and symptoms. Aims: To describe patients’ experiences of pre-diagnostic signs/symptoms and pathways to diagnosis, including where help was sought, and the processes involved. Methods: Mixed methods involving quantitative, qualitative and inductive thematic analyses using novel process mapping of patient journey data, as reported by the patients. We examined the time from symptom onset to first professional presentation (patient interval, PI), first consultation to diagnostic biopsy, first consultation to diagnosis (diagnostic interval) and first presentation to diagnosis (total interval). Results: A total of 87 interviews were conducted over 5 months in 2017. Of these, 78 (40 males/38 females) were included. The sarcoma subtypes were bone (n = 21), soft tissue (n = 41), head and neck (n = 9) and gastro-intestinal (GIST; n = 7). Age at diagnosis was 13–24 (n = 7), 25–39 (n = 23), 40–64 (n = 34) and 65+ (n = 14) years. The median PI was 13 days (1–4971) and similar between sarcoma subtypes, with the exception of GIST (mPI = 2 days, (1–60). The longest mPI (31 days, range 4–762) was for those aged 13–24 years. The median diagnostic interval was 87.5 (range 0–5474 days). A total of 21 patients were misdiagnosed prior to diagnosis and symptoms were commonly attributed to lifestyle factors. Conclusions: Prolonged times to diagnosis were experienced by the majority of patients in our sample. Further research into the evolution of pre-diagnostic sarcoma symptoms is required to inform awareness interventions.

摘要翻译： 

肉瘤患者常报告诊断时间较长，这归因于肉瘤的罕见性及对诊断前体征和症状的认识不足。目的：描述患者对诊断前体征/症状的经历及诊断路径，包括求助途径及所涉及的过程。方法：采用混合研究方法，结合定量、定性及归纳性主题分析，并利用患者报告的就医历程数据进行新型过程映射。我们分析了从症状出现到首次专业就诊（患者间隔，PI）、首次就诊到诊断性活检、首次就诊到确诊（诊断间隔）以及首次就诊到确诊（总间隔）的时间。结果：2017年5个月内共进行了87次访谈，其中78例（男性40例/女性38例）纳入分析。肉瘤亚型包括骨肉瘤（n=21）、软组织肉瘤（n=41）、头颈部肉瘤（n=9）和胃肠道间质瘤（GIST；n=7）。确诊年龄分布为13-24岁（n=7）、25-39岁（n=23）、40-64岁（n=34）和65岁及以上（n=14）。中位PI为13天（范围1-4971天），除GIST外各亚型间相似（GIST中位PI=2天，范围1-60天）。最长中位PI出现在13-24岁年龄组（31天，范围4-762天）。中位诊断间隔为87.5天（范围0-5474天）。共有21例患者在确诊前曾被误诊，症状常被归因于生活方式因素。结论：本研究样本中大多数患者经历了较长的诊断时间。需要进一步研究肉瘤诊断前症状的演变过程，以指导公众认知干预措施。

原文链接：

Patients’ Experiences of a Sarcoma Diagnosis: A Process Mapping Exercise of Diagnostic Pathways