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

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. 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. A total of 204 patients completed the questionnaire. Average annual costs varied from country to country, and ranged from a,not sign9509 to a,not sign49,233 (reference year 2012). Estimated direct healthcare costs ranged from a,not sign419 to a,not sign10,688; direct non-healthcare costs ranged from a,not sign7449 to a,not sign37,451 and labour productivity losses ranged from a,not sign0 to a,not sign7259. The average annual cost per patient across all countries was estimated at a,not sign31,390, out of which a,not sign5646 accounted for direct health costs (18.0 %), a,not sign23,483 accounted for direct non-healthcare costs (74.8 %), and a,not sign2261 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. 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.