Mapping the health management journey of allogeneic hematopoietic stem cell transplantation: a qualitative study.

BACKGROUND: Allogeneic hematopoietic stem cell transplantation serves as a curative therapy for various hematologic disorders. However, existing care models often lack a holistic perspective on patients' entire journey from diagnosis to long-term survival. OBJECTIVE: This study employs patient journey mapping to systematically analyze the comprehensive health management needs of allo-HSCT patients throughout their entire treatment cycle. METHODS: We adopted a descriptive qualitative design. Semi-structured interviews were conducted with 16 allo-HSCT patients between November and December 2025. Interview data were analyzed using inductive content analysis. Interview data were analyzed using conventional inductive content analysis. RESULTS: The patient treatment process was delineated into four distinct phases-screening and evaluation, transplantation, maintenance therapy, and long-term follow-up-with a total of 31 themes identified across three dimensions: task execution, emotional states, and pain point management. The symptom burden shifted dynamically throughout the treatment trajectory: psychological distress and decisional paralysis dominated the screening phase, escalating into concurrent acute physical symptoms during transplantation, and eventually transitioning to persistent functional decline driven by chronic graft-versus-host disease in long-term survivorship. Emotional experiences followed a parallel trajectory-from intense information needs and guilt in the screening phase, to profound isolation and emotional ambivalence during transplantation, and finally to a complex interplay of resilience and helplessness in the face of lasting sequelae during recovery. Across all phases, systemic pain points consistently centered on fragmented care transitions, a persistent misalignment between information provision and patients' evolving needs, a lack of sustainable support for lifelong self-management, and the compounding impact of financial strain and social role loss. CONCLUSION: The patient journey map constructed in this study offers a visual framework for understanding the holistic care needs of allo-HSCT patients across the entire trajectory and pinpoints four critical intervention nodes. Based on these findings, we recommend implementing phase-tailored health education aligned with patients' evolving cognitive needs, integrating routine financial toxicity screening into standard care pathways, strengthening structured transitional support at discharge, and establishing long-term survivorship programs that encompass vocational rehabilitation and peer support networks. These evidence-informed strategies can facilitate the transition from fragmented, event-driven care to integrated, patient-centered care across the entire transplant continuum.