Abstract:

Objective Utilizing patient journey mapping to decipher disease management behaviors，barriers，and needs in young and middle-aged liver transplant recipients，providing implications for self-management optimization and quality of life improvement. Methods Using purposive sampling，12 young and middle-aged liver transplant patients who attended outpatient clinics or were hospitalized in liver transplant center of a tertiary hospital in Qingdao were selected for semi-structured interviews from September to November 2024. Thematic extraction and analysis were performed using Colaizzi’s 7-step analysis，ultimately resulting in the development of a patient journey map. Results The journey stages were divided into transplantation decision-making period，transplantation waiting period，perioperative period，and post-discharge management period，and the journey key elements were designed as behaviors，barriers，and needs. A total of 25 themes were extracted，including behaviors（such as referrals to higher-level hospitals，verification of treatment options），barriers（such as lack of decision-making autonomy，health information-seeking barriers），and needs（such as shared decision-making，financial assistance）. Ultimately，resulting in a map of the disease management journey for young and middle-aged liver transplant recipients. Conclusion The behaviors，barriers，and needs in disease management among young and middle-aged liver transplant recipients demonstrate distinct phase-specific patterns. Healthcare providers should deliver precise and dynamic interventions tailored to each clinical phase，aiming to foster optimal self-management behaviors，address phase-specific barriers，and meet evolving patient needs throughout the transplant continuum.

Key words: Patient Journey Mapping, Liver Transplantation, Young and Middle-Aged, Disease Management, Quality of Life, Nursing Care

摘要：

目的 应用患者旅程地图剖析中青年肝移植患者诊疗全周期疾病管理的行为、困境与需求，为提高其疾病管理能力、改善生活质量提供依据。方法 采用目的抽样法，于2024年9—11月选取在青岛市某三级甲等医院肝脏移植中心门诊复查或病房住院的12例中青年肝移植患者进行半结构化访谈，采用Colaizzi 7步分析法进行主题提取与分析，最终形成旅程地图。结果 将旅程阶段划分为移植决策期、移植等待期、围手术期、院外管理期，将旅程要素设计为行为、困境、需求，提取上级医院转诊、治疗方案验证等行为，决策主体性缺失、信息搜寻等困境，共享决策、经济援助等需求，共计25个主题，形成中青年肝移植患者疾病管理旅程地图。结论 中青年肝移植患者疾病管理旅程中的行为、困境与需求呈周期特异性。医护人员应根据周期变化，提供精准化、动态化干预策略，以促使患者建立良好的管理行为，应对管理困境，满足管理需求。

关键词: 患者旅程地图, 肝移植, 中青年, 疾病管理, 生活质量, 护理