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

Aris Angelis (), Panos Kanavos, Julio López-Bastida, Renata Linertová, Juan Oliva (), Pedro Serrano-Aguilar, Manuel Posada- de-la-Paz, Domenica Taruscio, Arrigo Schieppati, Georgi Iskrov, Valentin Brodszky, Johann Matthias Graf Schulenburg, Karine Chevreul, Ulf Persson and Giovanni Fattore
Additional contact information
Aris Angelis: London School of Economics and Political Science
Panos Kanavos: London School of Economics and Political Science
Julio López-Bastida: University of Castilla-La Mancha
Renata Linertová: Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC)
Pedro Serrano-Aguilar: Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC)
Manuel Posada- de-la-Paz: Institute of Rare Diseases Research, ISCIII, SpainRDR and CIBERER
Domenica Taruscio: National Center for Rare Diseases, Istituto superiore di sanità (ISS)
Arrigo Schieppati: Centro di Ricerche Cliniche per Malattie Rare Aldo e Cele Daccò, Istituto di Ricerche Farmacologiche Mario Negri
Georgi Iskrov: Institute of Rare Diseases
Johann Matthias Graf Schulenburg: Leibniz Universität Hannover
Karine Chevreul: URC Eco Ile de France, AP-HP
Ulf Persson: The Swedish Institute for Health Economics
Giovanni Fattore: Bocconi University

The European Journal of Health Economics, 2016, vol. 17, issue 1, No 4, 42 pages

Abstract: 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.

Keywords: Epidermolysis bullosa; Cost-of-illness; Social cost; Health-related quality of life; European Union; Rare disease (search for similar items in EconPapers)
JEL-codes: I1 (search for similar items in EconPapers)
Date: 2016
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Citations: View citations in EconPapers (14)

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DOI: 10.1007/s10198-016-0783-4

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