Haemophilia in France: Modulization of the Clinical Pathway for Patients

Authors: Beny, K; du Sartz de Vigneulles, Benjamin; Carrouel, F; Bourgeois, D; Gay, V; Negrier, C; Dussart, C

Affiliations: 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 ; Haemophilia Care Center, Centre Hospitalier Métropole Savoie, 73011 Chambery, France; Reference Center on Haemophilia and Other Constitutional Hemorrhagic Diseases, Groupement Hospitalier Est, Hospices Civils de Lyon, 69002 Lyon, France.

Publication: International journal of environmental research and public health ; 2022 ; 19

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.