The Need for Comprehensive Care for Persons with Chronic Immune Thrombocytopenic Purpura

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.

Keywords:

• hemophilia
• hemorrhage
• idiopathic thrombocytopenic purpura
• platelet
• primary immune thrombocytopenia
• thrombocytopenia

Disclosure

Michael Tarantino reports The Bleeding and Clotting Disorders Institute - salaried position, CEO, CMO, personal fees from Amgen, Principia, Genentech, Grifols, HemaBiologics, Novo Nordisk, Octapharma, Takeda, and Spark Therapeutics, outside the submitted work. The authors report no other potential conflicts of interest for this work.