Haemophilia in France: Modelisation of the Clinical Pathway for Patients

Karen Beny, Benjamin du Sartz de Vigneulles, Florence Carrouel, Denis Bourgeois, Valérie Gay, Claude Negrier and Claude Dussart
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Karen Beny: Laboratory P2S (Health Systemic Process), UR 4129, Faculty of Medicine Laennec, University Claude Bernard Lyon 1, University of Lyon, 69008 Lyon, 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

IJERPH, 2022, vol. 19, issue 2, 1-14

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.

Keywords: haemophilia; healthcare management; trajectory; course; modeling (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2022
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