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Comparative Study
. 2016 Apr;17 Suppl 1(Suppl 1):31-42.
doi: 10.1007/s10198-016-0783-4. Epub 2016 Apr 23.

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

Aris Angelis  1 , Panos Kanavos  2 , Julio López-Bastida  3   4 , Renata Linertová  4   5 , Juan Oliva-Moreno  4   6 , Pedro Serrano-Aguilar  4   7 , Manuel Posada-de-la-Paz  8 , Domenica Taruscio  9 , Arrigo Schieppati  10 , Georgi Iskrov  11   12 , Valentin Brodszky  13 , Johann Matthias Graf von der Schulenburg  14 , Karine Chevreul  15   16   17 , Ulf Persson  18 , Giovanni Fattore  19 ; BURQOL-RD Research Network
Affiliations
Comparative Study

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

Aris Angelis et al. Eur J Health Econ. 2016 Apr.

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: Cost-of-illness; Epidermolysis bullosa; European Union; Health-related quality of life; Rare disease; Social cost.

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Figures

Fig. 1
Fig. 1
Mean costs per average epidermolysis bullosa (EB) patient broken down by type of cost (2012, €)
Fig. 2
Fig. 2
Direct healthcare (HC), direct non-healthcare (non-HC) and indirect costs according to patient disability (2012, €)
See this image and copyright information in PMC

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