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

Abstract

This paper investigates how the notion of comprehensive care (CC) in haemophilia is proposed in institutional guidelines and specialised understandings. A literature review of the articles published in Haemophilia was carried. 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 or 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 2 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 potential future developments in research designs and interventions.

The results of a survey about psychosocial care throughout Europe

“…However, in some countries access to psychosocial care services lags behind. 5,6 To pro- haematologist (41%), paediatric-haematologist (13%), paediatrician (8%), internist (5%), social worker (15%), psychologist (10%), nurse (5%) or physiotherapist (3%).…”

“…Lorynn Teela 1,2,3 Lotte Haverman 1,2,3 Christina Burgess 4 Petra Buckova 5 Karen Vandenabeele 6 Gaby Golan 7 Gloria Rooney 8 Ana Torres-Ortuño 9 EAHAD Physiotherapy Committee…”