Original article Indirect and non-medical economic burden, quality-of-life, and disabilities of the myelofibrosis disease in Spain

Abstract Introduction:Myelofibrosis is a non-frequent chronic myeloproliferative Philadelphia-negative chromosome neoplasm. Itis a heavy incapacitating orphan disease and associated with high morbidity and mortality. In this context,indirect and non-medical costs are expected to be high. The main objective of this project is to estimate theeconomic burden of this disease in Spain.Methods:Thirty-three patients with a diagnosis of myelofibrosis for at least 1 year participated in a questionnaire inthree Spanish centers. The study consisted of analyzing in various aspects the cost and impact of thedisease; indeed, daily life time limitations with a need of informal care, symtomatology. Additionally,information concerning the clinical management of the disease was collected through a focus group ofeight experts.Results:The mean age was 65 years. 15 of 33 patients were at their productive stage. Six had difficulties at work andeight have received informal care. Bone and muscular pain were the main symptoms of patients (72%). Theestimated global indirect andnon-medical costs of thedisease were 86,315Eper patient (20% working and80% informal care), which reached 104,153E at productive stage patients (45%) and 168,459Efor moresymptomatic patients.Conclusions:The economic burden of indirect and non-medical costs of myelofibrosis are important (15,142E/annual) asa result, and should be considered in economic evaluation, as well as in preventive plans for patients andcaregivers, despite the fact that studies with larger numbers of patients should be done.