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Social/economic costs and quality of life in patients with haemophilia in Europe

Author

Listed:
  • Marianna Cavazza

    (Bocconi University)

  • Yllka Kodra

    (National Centre for Rare Diseases, Istituto Superiore di Sanità (ISS))

  • Patrizio Armeni

    (Bocconi University)

  • Marta De Santis

    (National Centre for Rare Diseases, Istituto Superiore di Sanità (ISS))

  • 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 & CIBERER)

  • Domenica Taruscio

    (National Centre for Rare Diseases, Istituto Superiore di Sanità (ISS))

  • Arrigo Schieppati

    (“Aldo and Cele Daccò” Clinical Research Center for Rare Diseases, Mario Negri Institute for Pharmacological Research)

  • Georgi Iskrov

    (Institute of Rare Diseases
    Medical University of Plovdiv)

  • László Gulácsi

    (Corvinus University of Budapest)

  • Johann Matthias Graf Schulenburg

    (Leibniz Universität Hannover)

  • Panos Kanavos

    (London School of Economics and Political Science)

  • Karine Chevreul

    (URC Eco Ile de France, AP-HP
    Université Paris Diderot
    INSERM, ECEVE)

  • Ulf Persson

    (The Swedish Institute for Health Economics)

  • Giovanni Fattore

    (Bocconi University)

Abstract

Objective The aim of this study was to determine the economic burden from a societal perspective and the health-related quality of life (HRQOL) of patients with haemophilia in Europe. Methods We conducted a cross-sectional study of patients with haemophilia from Bulgaria, France, Germany, Hungary, Italy, Spain Sweden and the UK. Data on demographic characteristics, health resource utilisation, informal care, loss of labour productivity and HRQOL were collected from the questionnaires completed by patients or their caregivers. HRQOL was measured with the EuroQol 5-domain (EQ-5D) questionnaire. The costs have been estimated from a societal perspective adopting a bottom-up approach. Results A total of 401 questionnaires were included in the study, of which 339 were collected from patients with haemophilia and 62 from caregivers. The lowest average annual cost per person was reported in Bulgaria (€6,660) and the highest in Germany (€194,490). Our results demonstrate both a large difference from country to country in the average annual cost per patient in 2012 and the driving role of drugs in costs. Drugs represent nearly 90 % of direct healthcare costs in a majority of the countries analysed (Hungary, Italy, Spain and Germany). In Bulgaria, France and Sweden, however, healthcare services (visits, tests and hospitalisations) prevail. Costs are also shown to differ between children and adults. The mean EQ-5D index score for adult patients was 0.69 and mean EQ-5D VAS was 66.6. The mean EQ-5D index score for carers was 0.87 and mean EQ-5D VAS was 75.5. In the disability score, 60 % showed no disability and measuring caregiver burden with the Zarit Index produced an overall mean score of 25.3. Conclusion We have shown that haemophilia is associated with a substantial economic burden and impaired HRQOL. Studies on cost of illness and HRQOL are important for haemophilia as the future of this disease is likely to change with the development of new innovative treatments. The introduction of these treatments will most likely impact future costs related to haemophilia.

Suggested Citation

  • Marianna Cavazza & Yllka Kodra & Patrizio Armeni & Marta De Santis & Julio López-Bastida & Renata Linertová & Juan Oliva-Moreno & Pedro Serrano-Aguilar & Manuel Posada-de-la-Paz & Domenica Taruscio & , 2016. "Social/economic costs and quality of life in patients with haemophilia in Europe," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 17(1), pages 53-65, April.
    • Handle: RePEc:spr:eujhec:v:17:y:2016:i:1:d:10.1007_s10198-016-0785-2
    DOI: 10.1007/s10198-016-0785-2
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    References listed on IDEAS

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    1. Tarricone, Rosanna, 2006. "Cost-of-illness analysis: What room in health economics?," Health Policy, Elsevier, vol. 77(1), pages 51-63, June.
    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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    2. Isaac Aranda-Reneo & Luz María Peña-Longobardo & Juan Oliva-Moreno & Svenja Litzkendorf & Isabelle Durand-Zaleski & Eduardo F. Tizzano & Julio López-Bastida, 2020. "The Burden of Spinal Muscular Atrophy on Informal Caregivers," IJERPH, MDPI, vol. 17(23), pages 1-12, December.
    3. López-Bastida, J. & Ramos-Goñi, J.M. & Aranda-Reneo, I. & Trapero-Bertran, M. & Kanavos, P. & Rodriguez Martin, B., 2019. "Using a stated preference discrete choice experiment to assess societal value from the perspective of decision-makers in Europe. Does it work for rare diseases?," Health Policy, Elsevier, vol. 123(2), pages 152-158.
    4. Yllka Kodra & Marianna Cavazza & Marta de Santis & Andrea Guala & Maria-Elena Liverani & Patrizio Armeni & Maura Masini & Domenica Taruscio, 2020. "Social Economic Costs, Health-Related Quality of Life and Disability in Patients with Cri Du Chat Syndrome," IJERPH, MDPI, vol. 17(16), pages 1-14, August.
    5. Alicia Aurora Rodríguez & Óscar Martínez & Imanol Amayra & Juan Francisco López-Paz & Mohammad Al-Rashaida & Esther Lázaro & Patricia Caballero & Manuel Pérez & Sarah Berrocoso & Maitane García & Paul, 2021. "Diseases Costs and Impact of the Caring Role on Informal Carers of Children with Neuromuscular Disease," IJERPH, MDPI, vol. 18(6), pages 1-16, March.
    6. Karen Beny & Benjamin du Sartz de Vigneulles & Florence Carrouel & Denis Bourgeois & Valérie Gay & Claude Negrier & Claude Dussart, 2022. "Haemophilia in France: Modelisation of the Clinical Pathway for Patients," IJERPH, MDPI, vol. 19(2), pages 1-14, January.
    7. Patrizio Armeni & Marianna Cavazza & Entela Xoxi & Domenica Taruscio & Yllka Kodra, 2021. "Reflections on the Importance of Cost of Illness Analysis in Rare Diseases: A Proposal," IJERPH, MDPI, vol. 18(3), pages 1-18, January.

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