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

Author

Listed:
  • Aris Angelis

    (London School of Economics and Political Science)

  • Panos Kanavos

    (London School of Economics and Political Science)

  • Julio López-Bastida

    (University of Castilla-La Mancha
    Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC))

  • Renata Linertová

    (Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC)
    Fundación Canaria de Investigación Sanitaria (FUNCANIS))

  • Juan Oliva-Moreno

    (Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC)
    University of Castilla-La Mancha)

  • Pedro Serrano-Aguilar

    (Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC)
    Evaluation and Planning Service at Canary Islands Health Service)

  • Manuel Posada-de-la-Paz

    (Institute of Rare Diseases Research, ISCIII, SpainRDR and CIBERER)

  • Domenica Taruscio

    (National Center for Rare Diseases, Istituto superiore di sanità (ISS))

  • Arrigo Schieppati

    (Centro di Ricerche Cliniche per Malattie Rare Aldo e Cele Daccò, Istituto di Ricerche Farmacologiche Mario Negri)

  • Georgi Iskrov

    (Institute of Rare Diseases
    Medical University of Plovdiv)

  • Valentin Brodszky

    (Corvinus University of Budapest)

  • Johann Matthias Graf Schulenburg

    (Leibniz Universität Hannover)

  • Karine Chevreul

    (URC Eco Ile de France, AP-HP
    Université Paris Diderot, Sorbonne Paris Cité, ECEVE, UMRS 1123
    INSERM, ECEVE, U1123)

  • Ulf Persson

    (The Swedish Institute for Health Economics)

  • Giovanni Fattore

    (Bocconi University)

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.

Suggested Citation

  • Aris Angelis & Panos Kanavos & Julio López-Bastida & Renata Linertová & Juan Oliva-Moreno & Pedro Serrano-Aguilar & Manuel Posada-de-la-Paz & Domenica Taruscio & Arrigo Schieppati & Georgi Iskrov & Va, 2016. "Social/economic costs and health-related quality of life in patients with epidermolysis bullosa in Europe," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 17(1), pages 31-42, April.
    • Handle: RePEc:spr:eujhec:v:17:y:2016:i:1:d:10.1007_s10198-016-0783-4
    DOI: 10.1007/s10198-016-0783-4
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    References listed on IDEAS

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    1. Angelis, Aris & Tordrup, David & Kanavos, Panos, 2015. "Socio-economic burden of rare diseases: A systematic review of cost of illness evidence," Health Policy, Elsevier, vol. 119(7), pages 964-979.
    2. Bernard Berg & Werner Brouwer & Marc Koopmanschap, 2004. "Economic valuation of informal care," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 5(1), pages 36-45, February.
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    More about this item

    Keywords

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

    JEL classification:

    • I1 - Health, Education, and Welfare - - Health

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