2026-06-14T03:54:55Zhttps://repisalud.isciii.es/rest/oai/request

oai:repisalud.isciii.es:20.500.12105/155762025-06-12T13:19:32Zcom_20.500.12105_2052com_20.500.12105_2051col_20.500.12105_19616

00925njm 22002777a 4500 dc Angelis, Aris author Kanavos, Panos author López-Bastida, Julio author Linertová, Renata author Oliva-Moreno, Juan author Serrano-Aguilar, Pedro author Posada De la Paz, Manuel author Taruscio, Domenica author Schieppati, Arrigo author Iskrov, Georgi author Brodszky, Valentin author Graf von der Schulenburg, Johann Matthias author Chevreul, Karine author Persson, Ulf author Fattore, Giovanni author BURQOL-RD Research Network author 2016-04 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. Eur J Health Econ. 2016 Apr;17 Suppl 1(Suppl 1):31-42. 10.1007/s10198-016-0783-4 1618-7601 The European journal of health economics : HEPAC : health economics in prevention and care 27107597 http://hdl.handle.net/20.500.12105/15576 Epidermolysis bullosa Cost-of-illness Social cost Health-related quality of life European Union Rare disease Social/economic costs and health-related quality of life in patients with epidermolysis bullosa in Europe