“Back to life” project was born with the aim of quantifying myelofibrosis “burden of illness” in Italy, that is the disease impact on patients and relatives, in not only physical, but also emotional, psychological, economic and social terms.
Research was conducted means a combined use of quantitative tools, from the Evidence-Based approach (multiple-choice questionnaire with a section dedicated to Caregiver self-assessment questionnaire validated by AMA), and qualitative tools, from the Narrative Medicine approach (semi-structured narrative plot), to give people the possibility to narrate their illness experience.
This methodology, inclusive of both approaches, allowed not only to quantify investigated cases, but, through the narrative analysis, also to go beyond numbers to understand and to examine in depth details relative to patient’s and caregivers’ experience.
