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

Abstract

Abstract 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.