Health Distress and Challenges in Patients With Myeloproliferative Neoplasms During Follow-Up Consultations at the...

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.

To systematically identify and characterize the health distress and challenges experienced by patients with MPN in mainland China.

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.

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.