Comprehensive care for haemophilia: A literature review for improving institutional cooperation

This paper investigates how the notion of comprehensive care (CC) in haemophilia is presented in institutional guidelines and specialized understandings. A literature review of the articles published in Haemophilia was carried out. The main features which authors refer to when mentioning CC were outlined and compared with the principles, assumptions and recommendations set by the World Federation of Haemophilia in relation to this care model. The results show a fragmented scenario. First, very few articles are devoted/explicitly refer to CC. Second, only a few of them completely adhere to the notion of CC as proposed in institutional guidelines. In contrast, most articles stress a single feature, providing a partial view of the model. The focus is mainly on promoting physical health, which is however frequently associated with psychosocial health. Multidisciplinarity has great emphasis, too. Third, some key issues for CC emerge. They are implicitly present in institutional guidelines, but they become the very focus of some articles, which reflect on three challenges to be dealt with: care for all, transition care and systemic care. Such challenges offer the opportunity to clarify and expand the notion of haemophilia CC, and to propose future developments in research projects and interventions.