Haemophilia in France: Modelisation of the Clinical Pathway for Patients

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.

Multiple criteria decision analysis for therapeutic innovations in a hemophilia care center: A pilot study of the organizational impact of innovation in hemophilia care management

“…Inclusion criteria comprised (i) involvement in patient management in the center, (ii) familiarity with care organization, and (iii) being a medical or non-medical health professional. Individuals recruited were identified following an initial study on the care pathway of patient with hemophilia [26]. Among the 11 health professionals previously identified, only the biologist declined to participate.…”

Evaluation of the Care Pathway in the Context of the Dispensing of Emicizumab (Hemlibra) in Community Pharmacies in France: Protocol for a Cross-sectional Study Based on the Kirkpatrick Model

“…These changes in the dispensing circuit have important organizational consequences for community pharmacists, becoming both new stakeholders and contacts in the patient care pathway [ 17 ]. The effectiveness of this new organization, and in particular the training, therefore needs to be evaluated.…”

Evaluation of the care pathway in the context of the dispensing of emicizumab (Hemlibra) in community and hospital pharmacies in France: A patient satisfaction survey

“…Treatment accessibility represents a problem for chronic rare diseases treated on a long‐term due to exclusive accessibility in hospital pharmacy, with no possibility of home delivery in France, except for rare situations 1 . Significant changes in treatment accessibility are expected by patients community and carers 2 to reduce territorial constraints 3,4 .…”

“…Treatment accessibility represents a problem for chronic rare diseases treated on a long-term due to exclusive accessibility in hospital pharmacy, with no possibility of home delivery in France, except for rare situations. 1 Significant changes in treatment accessibility are expected by patients community and carers 2 to reduce territorial constraints. 3,4 As observed in a previous French study, both patients and hospital pharmacists pled for an evolution of the current dispensing circuit to improve access to treatment and reduce the burden of the disease, especially for active workers, parents and for patients living in rural areas.…”