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

Download statistics - Document (COUNTER):

Angelis, Aris; Kanavos, Panos; Lopez-Bastida, Julio; Linertova, Renata; Oliva-Moreno, Juan et al.: Social/economic costs and health-related quality of life in patients with epidermolysis bullosa in Europe. In: The European Journal of Health Economics : HEPAC : Health Economics in Prevention and Care 17 (2016), Suppl. 1, 42. DOI:

Repository version

To cite the version in the repository, please use this identifier:

Selected time period:


Sum total of downloads: 210

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 euro9509 to euro49,233 (reference year 2012). Estimated direct healthcare costs ranged from euro419 to euro10,688; direct non-healthcare costs ranged from euro7449 to euro37,451 and labour productivity losses ranged from euro0 to euro7259. The average annual cost per patient across all countries was estimated at euro31,390, out of which euro5646 accounted for direct health costs (18.0 %), euro23,483 accounted for direct non-healthcare costs (74.8 %), and euro2261 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.
License of this version: CC BY 4.0 Unported
Document Type: Article
Publishing status: publishedVersion
Issue Date: 2016
Appears in Collections:Wirtschaftswissenschaftliche Fakultät

distribution of downloads over the selected time period:

downloads by country:

pos. country downloads
total perc.
1 image of flag of Germany Germany 155 73.81%
2 image of flag of India India 17 8.10%
3 image of flag of United States United States 13 6.19%
4 image of flag of No geo information available No geo information available 4 1.90%
5 image of flag of Spain Spain 4 1.90%
6 image of flag of China China 3 1.43%
7 image of flag of Brazil Brazil 3 1.43%
8 image of flag of Finland Finland 2 0.95%
9 image of flag of Canada Canada 2 0.95%
10 image of flag of Ukraine Ukraine 1 0.48%
    other countries 6 2.86%

Further download figures and rankings:


Zur Erhebung der Downloadstatistiken kommen entsprechend dem „COUNTER Code of Practice for e-Resources“ international anerkannte Regeln und Normen zur Anwendung. COUNTER ist eine internationale Non-Profit-Organisation, in der Bibliotheksverbände, Datenbankanbieter und Verlage gemeinsam an Standards zur Erhebung, Speicherung und Verarbeitung von Nutzungsdaten elektronischer Ressourcen arbeiten, welche so Objektivität und Vergleichbarkeit gewährleisten sollen. Es werden hierbei ausschließlich Zugriffe auf die entsprechenden Volltexte ausgewertet, keine Aufrufe der Website an sich.

Search the repository