In 2014, the ISTUD Foundation had completed the project Back to Life: the narratives of patients with myelofibrosis. The aim was to analyze through the instrument of narrative medicine the emotional, physical and psychological spheres of patients and relatives related to myelofibrosis. The stories collected during this investigation focused on what is often called burden of illness.
In individuals with myelofibrosis, a lower number of megacaryocytes is produced, which, besides the possibility of maturation in platelets, may give rise to fibroblasts, or cells that allow tissue scarring. Symptoms of this pathology are manifold: from tiredness to pain, from weight loss to night sweats, itching to fever. Survival depends on the severity and speed of progression of the disease. It affects about 12 individuals per million people a year and is considered a rare disease. The middle-aged age is around 60 and young people are only 15% of the patients.
The Back to Life project did not focus solely on the psycho-physical aspect associated with this disease, but it showed some very interesting economic data. 4,000 is currently the number of ill patients with myelofibrosis in Italy, the study has reached 9.5% of the family-system destabilized by this disease. The only loss of earnings for changing work patterns is nearly 13,000 euros per family per year (8,065 euros for the patient and 4,692 euros for family members). 35% of patients lost or rescinded their occupation. The ISTUD study shows that if the patient is performing effective treatment, the loss of work is 13%, and the loss of earnings drops to 5,700 euros compared to the maximum loss of 10,430 euros for ineffective care.
The relationship between effective coping by patients and an economic saving on the annual loss is summarized and clearly shown in the table below:
Once again, the approach used by narrative medicine has proved to be an essential tool in highlighting not only the classical themes of medical humanities (medical-patient relationship, disease response and care, involvement of family members, etc.) but also data economically viable, able to provide an essential track to follow in the future to improve the cost of healthcare at both national and family levels.
