Life for patients with myelofibrosis: the physical, emotional and financial impact, collected using narrative medicine—Results from the Italian ‘Back to Life’ project
Myelofibrosis (MF) is a chronic myeloproliferative neoplasm characterised by an aggressive clinical course, with disabling symptoms and reduced survival. Patients experience a severely impaired quality of life and their families face the upheaval of daily routines and high disease-related financial costs. The aim of this study was to investigate the perceptions of Italian patients and their caregivers about living with MF and the burden of illness associated with MF.
A quali-quantitative questionnaire and a prompted written narrative survey were administered to patients affected by primary or post-essential thrombocythemia/post-polycythaemia vera MF and their primary caregiver in 35 Italian haematological centres.
In total, 287 questionnaires were returned by patients and 98 by caregivers, with 215 and 62, respectively, including the narrative. At the time of diagnosis, the most commonly expressed emotional states of patients were fear, distress and anger, confirming the difficulty of this phase. A high level of emotional distress was also reported by caregivers. Along the pathway of care, the ability to cope with the disease differed according to the quality of care received. The mean cost to each patient attributable to MF was estimated as €12,466 per year, with an estimated average annual cost of loss of income of €7774 per patient and €4692 per caregiver.
Better understanding of the personal life of MF patients and their families could improve the relationships between health workers and patients, resulting in better focused healthcare pathways and more effective financial support to maintain patients in their social roles.
KeywordsQuality of life Myelofibrosis Narrative medicine Burden of illness Indirect costs
The authors acknowledge Nicola Vianelli—Hematologist at Seràgnoli Institute of Hematology and Medical Oncology, S.Orsola-Malpighi Hospital, Bologna—Maria Giulia Marini—director at ISTUD Foundation Health Care Area, Milan—for their scientific consultation, and Paola Chesi and Silvia Napolitano—researchers at ISTUD Foundation Milan—for the revision of the paper. Moreover, the authors acknowledge all the physicians who collaborated in the realisation of the project and disseminated the activities into their health care centres, and all the people who released the own testimony on the living with the disease.
This study was supported unconditionally by Novartis Oncology, Italy. The publication of study results was not contingent on the sponsor’s approval.
Compliance with ethical standards
Conflict of interest
A. Iurlo has acted a consultant for and received honoraria from Novartis; M. Pellegrino has received honoraria from Novartis, as producer of deferasirox and ruxolitinib that are agents used for the treatment of myelofibrosis; M.Breccia has received honoraria from Novartis, BMS, Pfizer and Incyte; M. Bonifacio has received research fundings from Novartis; all other authors declared no conflict of interests.
Informed consent was obtained from all individual participants included in the study.
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