IDEAS home Printed from https://ideas.repec.org/a/gam/jijerp/v19y2022i2p646-d719336.html
   My bibliography  Save this article

Haemophilia in France: Modelisation of the Clinical Pathway for Patients

Author

Listed:
  • Karen Beny

    (Laboratory P2S (Health Systemic Process), UR 4129, Faculty of Medicine Laennec, University Claude Bernard Lyon 1, University of Lyon, 69008 Lyon, France
    Central Pharmacy, Hospices Civils de Lyon, CEDEX, 69563 Saint Genis Laval, France)

  • Benjamin du Sartz de Vigneulles

    (Laboratory P2S (Health Systemic Process), UR 4129, Faculty of Medicine Laennec, University Claude Bernard Lyon 1, University of Lyon, 69008 Lyon, France)

  • Florence Carrouel

    (Laboratory P2S (Health Systemic Process), UR 4129, Faculty of Medicine Laennec, University Claude Bernard Lyon 1, University of Lyon, 69008 Lyon, France)

  • Denis Bourgeois

    (Laboratory P2S (Health Systemic Process), UR 4129, Faculty of Medicine Laennec, University Claude Bernard Lyon 1, University of Lyon, 69008 Lyon, France)

  • Valérie Gay

    (Haemophilia Care Center, Centre Hospitalier Métropole Savoie, 73011 Chambery, France)

  • Claude Negrier

    (Reference Center on Haemophilia and Other Constitutional Hemorrhagic Diseases, Groupement Hospitalier Est, Hospices Civils de Lyon, 69002 Lyon, France)

  • Claude Dussart

    (Laboratory P2S (Health Systemic Process), UR 4129, Faculty of Medicine Laennec, University Claude Bernard Lyon 1, University of Lyon, 69008 Lyon, France
    Central Pharmacy, Hospices Civils de Lyon, CEDEX, 69563 Saint Genis Laval, France)

Abstract

Process-of-care studies participate in improving the efficiency of the care pathway for patient with haemophilia (CPPH) and rationalize the multidisciplinary management of patients. Our objective is to establish a current overview of the different actors involved in the management of patients with haemophilia and to provide an accurate description of the patient trajectory. This is a qualitative exploratory research based on interviews of the principal health professionals of four haemophilia services, between November 2019 and February 2020, in France. Mapping of the CPPH processes within the different institutions and/or services, as well as the rupture zones, were identified. Treatment delivery and biological analyses were carried out exclusively in healthcare institutions. The main liberal health professionals solicited were nurses, physiotherapists and general practitioner. Obstacles and barriers within the specialized service, with other hospital services and external hospital or private services, community health care providers et community environment and individual one was complex and multiples. Our research identified potential concerns that need to be addressed to improve future studies to identify influential elements. Similarly, other qualitative studies will have to be conducted on the perceptions and literacy of patients with haemophilia to develop a global interactive mapping of their trajectories.

Suggested Citation

  • 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.
    • Handle: RePEc:gam:jijerp:v:19:y:2022:i:2:p:646-:d:719336
    as

    Download full text from publisher

    File URL: https://www.mdpi.com/1660-4601/19/2/646/pdf
    Download Restriction: no
    File URL: https://www.mdpi.com/1660-4601/19/2/646/
    Download Restriction: no
    ---><---

    References listed on IDEAS

    as
    1. Stephen Rocks & Daniela Berntson & Alejandro Gil-Salmerón & Mudathira Kadu & Nieves Ehrenberg & Viktoria Stein & Apostolos Tsiachristas, 2020. "Cost and effects of integrated care: a systematic literature review and meta-analysis," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 21(8), pages 1211-1221, November.
    2. 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.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Vanessa Ress & Eva‐Maria Wild, 2024. "The impact of integrated care on health care utilization and costs in a socially deprived urban area in Germany: A difference‐in‐differences approach within an event‐study framework," Health Economics, John Wiley & Sons, Ltd., vol. 33(2), pages 229-247, February.
    2. 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.
    3. María J. Mendoza-Jiménez & Job Exel & Werner Brouwer, 2024. "On spillovers in economic evaluations: definition, mapping review and research agenda," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 25(7), pages 1239-1260, September.
    4. 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.
    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. Guillaume Sekli, 2022. "A cooperative game approach to integrated healthcare," Working Papers 2022-06, CRESE.
    7. Zonneveld, Nick & Glimmerveen, Ludo & Kenis, Patrick & Toro Polanco, Nuria & Johansen, Anne S. & Minkman, Mirella M.n., 2022. "Values underpinning integrated, people-centred health services : Similarities and differences among actor groups across Europe," Other publications TiSEM ad0d23d2-8217-451e-bb5f-3, Tilburg University, School of Economics and Management.
    8. Valentin Brodszky & Zsuzsanna Beretzky & Petra Baji & Fanni Rencz & Márta Péntek & Alexandru Rotar & Konstantin Tachkov & Susanne Mayer & Judit Simon & Maciej Niewada & Rok Hren & László Gulácsi, 2019. "Cost-of-illness studies in nine Central and Eastern European countries," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 20(1), pages 155-172, June.
    9. 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.
    10. 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.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:gam:jijerp:v:19:y:2022:i:2:p:646-:d:719336. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: MDPI Indexing Manager (email available below). General contact details of provider: https://www.mdpi.com .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.