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

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