Abstract: Background Effective and rapid healthcare-seeking and referral are prerequisites that ensure the life safety of patients with type A aortic dissection (TAAD) , one of the most critical cardiovascular diseases. Existing studies on healthcare-seeking and referral experiences of patients with TAAD and their families are mostly quantitative, while the real experiences and needs of these patients and their families deserve attention.Objective To explore the real experiences, feelings and needs of patients with TAAD and their families during healthcare-seeking and referral process, providing references for improving the treatment system of aortic dissection in China.Methods Purposive sampling was used to recruit TAAD patients (n=15) and their families from Department of Cardiovascular Surgery, Shanxi Bethune Hospital from September to December 2021. Their experiences, feelings and needs during healthcare-seeking and referrals were collected using a semi-structured interview, and analyzed using the Colaizzi's method to identify themes.Results Three themes were identified: Inner experiences at different stages (confusion at the time of onset, complex inner activities during healthcare-seeking and referral process, preoperative inner conflicts) , problems with the aortic dissection diagnosis and treatment system (unsatisfactory quality of diagnosis and treatment, weaknesses in healthcare-seeking process) , real demands of patients and their families (demands for TAAD-related knowledge and access to the disease, economic-related demands) .Conclusion Patients with TAAD and their families had complex inner experiences and multiple needs as well as multiple difficulties during the healthcare-seeking and referral process, suggesting that the diagnosis, treatment and referral system of aortic dissection in China needs to be improved. To improve the quality level of first aid, diagnosis and treatment for aortic dissection, actions need to be taken to conduct standardized diagnosis and treatment aortic dissection training, form a fast channel for aortic dissection diagnosis and treatment, strengthen the popularization of aortic dissection-related knowledge, and improve the funding system of aortic dissection.

Key words: Aortic dissection, Aortic aneurysm, Patients, Family, Clinic visits, Referral, Experiences, Qualitative research

摘要： 背景 主动脉夹层是最危急的心血管疾病之一，快速、有效地就诊及转诊是A型主动脉夹层患者生命安全得到切实保障的前提。现阶段国内外关于A型主动脉夹层患者就诊、转诊的研究多为调查性研究，A型主动脉夹层患者及其家属在就诊、转诊过程中的真实体验及需求值得关注。目的 了解A型主动脉夹层患者及其家属在就诊、转诊过程中的经历及心理体验，挖掘其需求，为完善我国主动脉夹层救治体系提供参考。方法 采用目的抽样法，选取2021年9—12月于山西省某三级甲等医院心脏大血管外科就诊的15例A型主动脉夹层患者及其家属为研究对象，采用半结构式访谈法收集定性资料，运用Colaizzi现象学资料7步分析法对资料进行分析，并提炼访谈主题。结果 A型主动脉夹层患者及其家属对就诊、转诊过程的体验可归纳为3个主题：不同阶段的内心体验（发病时的困惑，就诊、转诊过程中的复杂内心活动，术前的内心冲突），主动脉夹层诊疗系统存在的问题（诊疗质量待改进，就医程序存在"短板"），患者及其家属的真实需求（对疾病知识与获取途径的需求，经济相关的需求）。结论 A型主动脉夹层患者及其家属在就诊、转诊过程中内心体验复杂，存在多重需求，并面临诸多困难，我国主动脉夹层诊疗体系有待进一步完善。未来应通过开展主动脉夹层规范化诊疗培训、形成主动脉夹层诊疗绿色通道、加强相关知识的普及教育、完善资助体系等路径，提高主动脉夹层急救与诊疗质量。

关键词: 主动脉夹层, 主动脉瘤, 患者, 家属, 就诊, 转诊, 体验, 定性研究