Abstract
BACKGROUND: Myeloproliferative neoplasms (MPN) present significant management challenges as their constitutional symptoms greatly affect patients' quality of life. While current literature addresses hematological aspects, the full symptom burden and post-clinic challenges for adult patients, especially in outpatient settings, remain unclear. AIMS: To systematically identify and characterize the health distress and challenges experienced by patients with MPN in mainland China. METHODS AND RESULTS: This qualitative study employed semi-structured interviews with adults diagnosed with MPN (n = 26) to explore their experiences in the outpatient clinic. Colaizzi's descriptive framework guided transcript analysis. Four themes and 12 subthemes were identified: (1) living with the illness, (2) the Sword of Damocles, (3) role conflict, and (4) systemic barriers. These themes informed the development of a trajectory describing the physical and psychological experiences of MPN patients after outpatient visits. CONCLUSION: Chinese MPN patients encounter significant health challenges, including persistent symptoms, psychological distress, social limitations, and inadequate self-management. A comprehensive understanding of their longitudinal experiences is essential for designing effective interventions. Additional research should focus on integrating biopsychosocial management into routine follow-up care.