Please use this identifier to cite or link to this item:http://hdl.handle.net/20.500.12105/15576
Title
Social/economic costs and health-related quality of life in patients with epidermolysis bullosa in Europe
Author(s)
Angelis, Aris | Kanavos, Panos | López-Bastida, Julio | Linertová, Renata | Oliva-Moreno, Juan | Serrano-Aguilar, Pedro | Posada De la Paz, Manuel ISCIII | Taruscio, Domenica | Schieppati, Arrigo | Iskrov, Georgi | Brodszky, Valentin | Graf von der Schulenburg, Johann Matthias | Chevreul, Karine | Persson, Ulf | Fattore, Giovanni | BURQOL-RD Research Network
Date issued
2016-04
Citation
Eur J Health Econ. 2016 Apr;17 Suppl 1(Suppl 1):31-42.
Language
Inglés
Document type
journal article
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.
Subject
Epidermolysis bullosa | Cost-of-illness | Social cost | Health-related quality of life | European Union | Rare disease
MESH
Cost of Illness | Health Care Costs | Quality of Life | Adolescent | Adult | Caregivers | Child | Cross-Sectional Studies | Epidermolysis Bullosa | Europe | European Union | Female | Humans | Male | Middle Aged | Patient Care | Sick Leave | Sickness Impact Profile | Socioeconomic Factors | Surveys and Questionnaires | United Kingdom | Young Adult
Online version
DOI
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