Indirect and non-medical economic burden, quality-of-life, and disabilities of the myelofibrosis disease in Spain.
BACKGROUND
Myelofibrosis is a non-frequent chronic myeloproliferative Philadelphia-negative chromosome neoplasm. It is 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 the economic burden of this disease in Spain.


METHODS
Thirty-three patients with a diagnosis of myelofibrosis for at least 1 year participated in a questionnaire in three Spanish centers. The study consisted of analyzing in various aspects the cost and impact of the disease; 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 of eight experts.


RESULTS
The mean age was 65 years. 15 of 33 patients were at their productive stage. Six had difficulties at work and eight have received informal care. Bone and muscular pain were the main symptoms of patients (72%). The estimated global indirect and non-medical costs of the disease were 86,315€ per patient (20% working and 80% informal care), which reached 104,153€ at productive stage patients (45%) and 168,459€ for more symptomatic patients.


CONCLUSIONS
The economic burden of indirect and non-medical costs of myelofibrosis are important (15,142€/annual) as a result, and should be considered in economic evaluation, as well as in preventive plans for patients and caregivers, despite the fact that studies with larger numbers of patients should be done.
Antares-Consulting , Barcelona , Spain.
Emmanuel
E
Gimenez
Carles
C
Besses
Concepcion
C
Boque
Patricia
P
Velez
Ana
A
Kerguelen
Francisco
F
Cervantes
Francisca
F
Ferrer-Marin
Manuel
M
Perez-Encinas
Mercedes
M
Rodriguez
Juan Diego
JD
Gonzalez
Reyes
R
Calzada
Juan Carlos
JC
Hernandez-Boluda
D000203:Activities of Daily Living; D000368:Aged; D017028:Caregivers / Q000191:economics / Q000706:statistics & numerical data; D017281:Cost of Illness; D003365:Costs and Cost Analysis; D006233:Persons with Disabilities / Q000706:statistics & numerical data*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D051346:Mobility Limitation; D010146:Pain / Q000209:etiology; D055728:Primary Myelofibrosis / Q000150:complications / Q000191:economics* / Q000523:psychology; D011788:Quality of Life; D012959:Socioeconomic Factors; D013030:Spain
Economic burden of disease; Indirect costs; Myelofibrosis; Spain