Lived Experience of Patients with Myeloproliferative Neoplasm: An Interpretative Phenomenological Study.
Key claim: Patients with ET, PV, or myelofibrosis describe a lasting physical, psychological, and social burden from incidental diagnosis onward and call for multilayered person-centered care with better communication, tailored education, and flexible including remote support.
Abstract
OBJECTIVE: This study aims to investigate the lived experiences of patients with MPNs, including daily challenges, disease-related burden, and suggestions for improving care. METHODS: Sixteen patients with essential thrombocythemia, polycythemia vera, or myelofibrosis participated in three focus groups in an Italian hematology outpatient clinic of an academic hospital. Data were analyzed using interpretative phenomenological analysis (IPA), and findings were mapped against the person-centered care (PCC) framework to identify implications for care delivery and improvement. RESULTS: Three superordinate themes emerged: (1) A silent start, a lasting impact, describing the shock of incidental diagnosis and the pervasive physical and psychological burden; (2) Adjusting to the disease, reflecting identity changes, emotional distress, and coping strategies; and (3) Need for a multilayered approach, encompassing family and community support, clinical information needs, and a patient-centered healthcare system. Patients highlighted the need for improved communication, tailored education, and supportive services, with the possibility of a remote contact. CONCLUSION: MPNs profoundly affect patients’ physical, psychological, and social well-being. Structured symptom monitoring, tailored education, and flexible healthcare delivery could address patient’s disease-related burden, enhance self-management, and empower patients. IMPLICATIONS FOR NURSING PRACTICE: Nurses are well positioned to provide structured symptom assessment, proactive education, and ongoing psycho physical support. Implementing nurse-led services, either in person or through remote systems, can enhance continuity of care, improve patients’ understanding of their disease, and promote self-management skills.
Why this matters
Patients with ET, PV, or myelofibrosis describe a lasting physical, psychological, and social burden from incidental diagnosis onward and call for multilayered person-centered care with better communication, tailored education, and flexible including remote support.