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Social/economic costs and health-related quality of life in patients with cystic fibrosis in Europe

Author

Listed:
  • Karine Chevreul

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

  • Morgane Michel

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

  • Karen Berg Brigham

    (URC Eco Ile de France, AP-HP, Hôtel Dieu
    Université Paris Est)

  • 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

    (Istituto superiore di sanita (ISS))

  • Arrigo Schieppati

    (Istituto di Ricerche Farmacologiche Mario Negri)

  • Georgi Iskrov

    (Institute of Rare Diseases
    Medical University of Plovdiv)

  • Márta Péntek

    (Corvinus University of Budapest)

  • Johann Matthias Graf Schulenburg

    (Leibniz Universität Hannover)

  • Panos Kanavos

    (London School of Economics and Political Science)

  • Ulf Persson

    (The Swedish Institute for Health Economics)

  • Giovani Fattore

    (Università Commerciale Luigi Bocconi)

Abstract

Objectives Our goal was to provide data on the economic burden and health-related quality of life (HRQOL) of patients with cystic fibrosis (CF) and their caregivers in Europe. Methods A cross-sectional study was carried out on adults and children with CF in eight European countries. Patients completed an anonymous questionnaire regarding their socio-demographic characteristics, use of healthcare services and presence of a caregiver. Costs were calculated with a bottom-up approach using unit costs from each participating country, and HRQOL was assessed using EQ-5D. The principal caregiver also answered a questionnaire on their characteristics, HRQOL and burden. Results A total of 905 patients with CF was included (399 adults and 506 children). The total average annual cost per patient varied from €21,144 in Bulgaria to €53,256 in Germany. Adults had higher direct healthcare costs than children, but children had much higher informal care costs (P

Suggested Citation

  • Karine Chevreul & Morgane Michel & Karen Berg Brigham & Julio López-Bastida & Renata Linertová & Juan Oliva-Moreno & Pedro Serrano-Aguilar & Manuel Posada-de-la-Paz & Domenica Taruscio & Arrigo Schiep, 2016. "Social/economic costs and health-related quality of life in patients with cystic fibrosis in Europe," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 17(1), pages 7-18, April.
    • Handle: RePEc:spr:eujhec:v:17:y:2016:i:1:d:10.1007_s10198-016-0781-6
    DOI: 10.1007/s10198-016-0781-6
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    References listed on IDEAS

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    Cited by:

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    10. 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.
    11. 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.
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    13. Alicia Aurora Rodríguez & Imanol Amayra & Juan Francisco López-Paz & Oscar Martínez & Maitane García & Mónika Salgueiro & Mohammad Al-Rashaida & Paula María Luna & Paula Pérez-Nuñez & Nicole Passi & I, 2022. "The Role of Associations in Reducing the Emotional and Financial Impact on Parents Caring for Children with Duchenne Muscular Dystrophy: A Cross-Cultural Study," IJERPH, MDPI, vol. 19(19), pages 1-15, September.
    14. 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.
    15. Petra Baji & Dominik Golicki & Valentina Prevolnik-Rupel & Werner B. F. Brouwer & Zsombor Zrubka & László Gulácsi & Márta Péntek, 2019. "The burden of informal caregiving in Hungary, Poland and Slovenia: results from national representative surveys," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 20(1), pages 5-16, June.
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