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The European Journal of Health Economics
Published in: The European Journal of Health Economics 1/2016

01-04-2016 | Original Paper

Social/economic costs and health-related quality of life in patients with Duchenne muscular dystrophy in Europe

Authors: Marianna Cavazza, Yllka Kodra, Patrizio Armeni, Marta De Santis, Julio López-Bastida, Renata Linertová, Juan Oliva-Moreno, Pedro Serrano-Aguilar, Manuel Posada-de-la-Paz, Domenica Taruscio, Arrigo Schieppati, Georgi Iskrov, Márta Péntek, Johann Matthias Graf von der Schulenburg, Panos Kanavos, Karine Chevreul, Ulf Persson, Giovanni Fattore, BURQOL-RD Research Network

Published in: The European Journal of Health Economics | Special Issue 1/2016

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Abstract

Objective

The aim of this study was to determine the economic burden from a societal perspective and the health-related quality of life (HRQOL) of patients with Duchenne muscular dystrophy (DMD) in Europe.

Methods

We conducted a cross-sectional study of patients with DMD from Bulgaria, France, Germany, Hungary, Italy, Spain, Sweden, and the UK. Data on demographic characteristics, healthcare resource utilization, informal care, labor productivity losses, and HRQOL were collected from the questionnaires completed by patients or their caregivers. HRQOL was measured with the EuroQol 5-domain (EQ-5D) questionnaire. Costs have been estimated from a societal perspective adopting a bottom-up approach.

Results

A total of 422 questionnaires were included in the study; 268 of which were collected from patients with DMD and 154 from caregivers. The average annual cost per person in 2012 ranged from €7657 in Hungary to €58,704 in France. Direct non-healthcare costs are the main component of whole costs and informal care is the main driver of non-healthcare costs. Costs are also shown to differ between children and adults. With regard to HRQOL of adult patients, the EQ-5D VAS score and EQ-5D index scores were 50.5 and 0.24, respectively. The corresponding EQ-5D VAS and EQ-5D index scores for caregivers were 74.7 and 0.71, respectively.

Conclusions

We have estimated the average annual cost per patient with DMD in eight European countries adopting a social perspective, and to our knowledge this is the first study with such a wide perspective. The results on costs show a considerable gap between Eastern and Western European countries. Non-healthcare costs range from 64 to 89 % of overall costs and informal care is to a great extent the main driver of this cost category. The HRQOL of people with DMD is much lower than that of the general population.
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Metadata
Title
Social/economic costs and health-related quality of life in patients with Duchenne muscular dystrophy in Europe
Authors
Marianna Cavazza
Yllka Kodra
Patrizio Armeni
Marta De Santis
Julio López-Bastida
Renata Linertová
Juan Oliva-Moreno
Pedro Serrano-Aguilar
Manuel Posada-de-la-Paz
Domenica Taruscio
Arrigo Schieppati
Georgi Iskrov
Márta Péntek
Johann Matthias Graf von der Schulenburg
Panos Kanavos
Karine Chevreul
Ulf Persson
Giovanni Fattore
BURQOL-RD Research Network
Publication date
01-04-2016
Publisher
Springer Berlin Heidelberg
Published in
The European Journal of Health Economics / Issue Special Issue 1/2016
Print ISSN: 1618-7598
Electronic ISSN: 1618-7601
DOI
https://doi.org/10.1007/s10198-016-0782-5

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