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.
Highlights
Haemophilia A and B (ICD9: 286.0 and 286.1; ICD-10-CM code D66) encompass congenital deficiencies of the intrinsic pathway coagulation factors VIII (FVIII) and IX (FIX), respectively, with a variable risk for bleeding based on the type of haemophilia and the extent of factor deficiency [1]
Consultations and care of patients are essentially performed in a haemophilia reference centre (HRC), or a resource and competence centre—constitutional haemorrhagic diseases (CRC-MHC), or a treatment centre for Constitutional haemorrhagic Diseases (CTMHC)
The method was to get a group of people to work on this picture, to have the elements that can vary the pathway of patients with haemophilia and, if fine, to identify all the impacts of therapeutic innovations on the trajectory
Summary
Haemophilia A and B (ICD9: 286.0 and 286.1; ICD-10-CM code D66) encompass congenital deficiencies of the intrinsic pathway coagulation factors VIII (FVIII) and IX (FIX), respectively, with a variable risk for bleeding based on the type of haemophilia and the extent of factor deficiency [1]. Estimated prevalence is 24.6 cases per 100,000 males for all severities of haemophilia A. It is 9.5 cases per 100,000 males for severe haemophilia A, 5.0 cases per 100,000 males for all severities of haemophilia B, and 1.5 cases per 100,000 males for severe haemophilia B. In. 1999, the World Federation of Haemophilia Annual Global Survey identified 78,629 people with haemophilia; this number has since increased to 210,454 in 2018 [3,4]. Since the start of the AGS (Annual Global Survey), there has been a tripling in the number of people identified with all rare bleeding disorders reported. The overview of trends and patterns in haemophilia and its treatment from the World Federation of Haemophilia’s Annual Global
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