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Published on: December 22, 2016
Lived Experience of Patients with Myeloproliferative Neoplasm: An Interpretative Phenomenological Study
Daniela Berardinelli1, Sara Campagna1, Francesca Cotardo2
1Department of Public Health and Pediatrics, University of Torino, Torino, Italy.
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.
Insights
Patients with myeloproliferative neoplasms (MPNs) face significant physical and psychological burdens. Improving care requires a multilayered approach focusing on communication, education, and supportive services.
Area of Science:
- Hematology
- Patient Experience Research
- Qualitative Health Research
Background:
- Myeloproliferative neoplasms (MPNs) significantly impact patients' daily lives.
- Understanding the lived experiences of MPN patients is crucial for improving care.
Purpose of the Study:
- To investigate the lived experiences of MPN patients.
- To identify daily challenges, disease burden, and areas for care improvement.
Main Methods:
- Qualitative study involving 16 MPN patients (essential thrombocythemia, polycythemia vera, myelofibrosis).
- Three focus groups conducted in an Italian academic hospital outpatient clinic.
- Interpretative phenomenological analysis (IPA) used for data analysis, mapped against person-centered care (PCC) framework.
Main Results:
- Three themes emerged: 'A silent start, a lasting impact' (diagnosis shock, burden), 'Adjusting to the disease' (identity, distress, coping), and 'Need for a multilayered approach' (support, information, patient-centered system).
- Patients emphasized needs for better communication, tailored education, and supportive services, including remote options.
Conclusions:
- MPNs have profound physical, psychological, and social effects.
- Structured monitoring, education, and flexible healthcare delivery can improve self-management and patient empowerment.
- Nurse-led services, in-person or remote, can enhance care continuity and patient understanding.
