Social/economic costs and health-related quality of life in patients with epidermolysis bullosa in Europe

authored by

BURQOL-RD Research Network , Aris Angelis, Panos Kanavos, Julio López-Bastida, Renata Linertová, Juan Oliva-Moreno, Pedro Serrano-Aguilar, Manuel Posada-de-la-Paz, Domenica Taruscio, Arrigo Schieppati, Georgi Iskrov, Valentin Brodszky, Johann Matthias Graf von der Schulenburg, Karine Chevreul, Ulf Persson, Giovanni Fattore

Abstract

Background: The aim of this study was to determine the social/economic costs and health-related quality of life (HRQOL) of patients with epidermolysis bullosa (EB) in eight EU member states. Methods: We conducted a cross-sectional study of patients with EB from Bulgaria, France, Germany, Hungary, Italy, Spain, Sweden and the United Kingdom. Data on demographic characteristics, health resource utilisation, informal care, labour 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. Results: A total of 204 patients completed the questionnaire. Average annual costs varied from country to country, and ranged from €9509 to €49,233 (reference year 2012). Estimated direct healthcare costs ranged from €419 to €10,688; direct non-healthcare costs ranged from €7449 to €37,451 and labour productivity losses ranged from €0 to €7259. The average annual cost per patient across all countries was estimated at €31,390, out of which €5646 accounted for direct health costs (18.0 %), €23,483 accounted for direct non-healthcare costs (74.8 %), and €2261 accounted for indirect costs (7.2 %). Costs were shown to vary across patients with different disability but also between children and adults. The mean EQ-5D score for adult EB patients was estimated at between 0.49 and 0.71 and the mean EQ-5D visual analogue scale score was estimated at between 62 and 77. Conclusion: In addition to its negative impact on patient HRQOL, our study indicates the substantial social/economic burden of EB in Europe, attributable mostly to high direct non-healthcare costs.

Organisation(s)

Center for Health Economics Research Hannover (CHERH)

External Organisation(s)

London School of Economics and Political Science
Universidad de Castilla-La Mancha
Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC)
Canary Islands Foundation for Health Research (FUNCANIS)
Canary Islands Health Service
Istituto Superiore di Sanita
Institute of Pharmacological Research Mario Negri IRCCS
Institute of Rare Diseases
Medical University of Plovdiv
Corvinus University of Budapest
AP-HP Assistance Publique - Hopitaux de Paris
Université de Paris
Institut national de la santé et de la recherche médicale (INSERM)
The Swedish Institute for Health Economics
Università Commerciale Luigi Bocconi
Institute of Health Carlos III (ISCIII)

Type

Article

Journal

European Journal of Health Economics

Volume

17

Pages

31-42

No. of pages

12

ISSN

1618-7598

Publication date

04.2016

Publication status

Published

Peer reviewed

Yes

ASJC Scopus subject areas

Economics, Econometrics and Finance (miscellaneous), Health Policy

Sustainable Development Goals

SDG 3 - Good Health and Well-being

Electronic version(s)

https://doi.org/10.1007/s10198-016-0783-4 (Access: Open)