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

• DOI: 10.1007/s10198-016-0783-4
• Publication Date: 2016-04-23T06:14:50Z
• Authors: Aris Angelis; Panos Kanavos; Julio López-Bastida; Renata Linertová; Juan Oliva-Moreno; Pedro Serrano-Agu...; Manuel Posada-de-...; Domenica Taruscio; Arrigo Schieppati; Georgi Iskrov; Valentin Brodszky; Johann Matthias G...; Karine Chevreul; Ulf Persson; Giovanni Fattore
• Keywords: Adult; Male; Adolescent; Health-related quality of life; Economics, Econometrics and Finance (miscellaneous); Young Adult; 03 medical and health sciences; Dewey Decimal Classification::300 | Sozialwissenschaften, Soziologie, Anthropologie::330 | Wirtschaft; 0302 clinical medicine; Cost of Illness; Sickness Impact Profile; Surveys and Questionnaires; Social cost; Humans; European Union; Epidermolysis bullosa; Child; Original Paper; Health Policy; Cost-of-illness; Health Care Costs; Middle Aged; United Kingdom; 3. Good health; Europe; Cross-Sectional Studies; Caregivers; Socioeconomic Factors; Quality of Life; Female; Patient Care; Sick Leave; Epidermolysis Bullosa; Rare disease

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 euro9509 to euro49,233 (reference year 2012). Estimated direct healthcare costs ranged from euro419 to euro10,688; direct non-healthcare costs ranged from euro7449 to euro37,451 and labour productivity losses ranged from euro0 to euro7259. The average annual cost per patient across all countries was estimated at euro31,390, out of which euro5646 accounted for direct health costs (18.0 %), euro23,483 accounted for direct non-healthcare costs (74.8 %), and euro2261 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.