<p>The Need for Comprehensive Care for Persons with Chronic Immune Thrombocytopenic Purpura</p>

Abstract

Chronic platelet disorders (CPD), including chronic immune thrombocytopenic purpura (cITP), thrombotic thrombocytopenic purpura (TTP) and platelet function disorders are among the most common bleeding disorders and are associated with morbidity and mortality. The clinical phenotype and complexity of cITP is much like that of hemophilia. In cITP and hemophilia, bleeding is problematic for many, complicating employability, insurability and overall quality-of-life (QoL). While myriad drug therapies are available for cITP and hemophilia, each are variable in their effectiveness, very few (except for clotting factor concentrates for hemophilia) alter the natural history of the disorder and sometimes contribute to specific morbidities and mortality. Like in hemophilia, the management of cITP is not solely based on access to effective treatment but also includes accurate diagnosis and comprehensive care by a multidisciplinary team of specialists trained in the management of bleeding disorders. The model of comprehensive care in Hemophilia Treatment Centers (HTCs) has been recognized as highly effective, improving life expectancy for persons with hemophilia. cITP, and other CPDs, are complex disorders requiring specialized care. However, an integrated care model with a systematic and reliable population-based surveillance program does not exist. Extending the Comprehensive Care model with all its related benefits to the community of persons with cITP is sorely needed. This review will focus on cITP as a prototype chronic platelet disorder that could benefit greatly from the Comprehensive Care model.

Haemophilia in France: Modelisation of the Clinical Pathway for Patients

“…Through daily self-management, patients with haemophilia become experts and partners in their own care. As such, they should be considered as separate essential members of the comprehensive care team [ 11 ]. However, main risks of disruption in this process target parameters such as patient typology, geographical accessibility, characteristics of the patient’s disease, non-medical environment and therefore the patient’s environment.…”

“…The healthcare process of a patient with haemophilia is complex: it is dynamic, variable and multidisciplinary [ 11 ]. The phases of the process involve several elements: the specialties of the provider(s), the procedures performed, the diagnoses observed, the therapeutic treatments and the biological analyses [ 12 ].…”

“…Modelling the clinical pathways of people with haemophilia is part of the process of analysing and providing decision support systems to institutional and field actors involved in the overall and systemic care of patients. Based on the modelling of industrial processes and applied to more diversified and heterogeneous care paths, this is an original and essential step in improving the quality of health care [ 11 ]. This approach will make it possible to organize, rationalize and standardize the multidisciplinary management of patients to improve the performance of systems.…”