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Recommendations for assessment, monitoring and follow-up of patients with haemophilia

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de Moerloose, Philippe Fischer, Kathelijne Lambert, Thierry Windyga, Jerzy Bátorová, Angelika Hermans, Cédric [UCL]

Over the last few decades, clinical follow-up of patients with haemophilia has become more complex as a result of the introduction of new treatment strategies, the presence of comorbidities related to haemophilia or ageing, as well as the emergence of new tools to evaluate the medical and social consequences of haemophilia. This publication describes the parameters and information that should be documented and the tests, examinations and interventions required for optimal follow-up of a patient with haemophilia. In the absence of formal studies, the present recommendations have been established as result of a series of consensus meetings in the frame of the European Haemophilia Therapy Standardization Board (EHTSB). The following 11 domains were identified: Baseline information, Current status, Treatment, Inhibitor status, Bleeding, Joint status and pain, Comorbidities, Dental care, Physical activities, Social participation and Quality of life. For each domain, details are proposed for the relevant parameters to be captured and monitored as well as the relevant tools that facilitate data collection. Adopting these recommendations should help the individual care of patients and, even though this is not the primary objective of this article, it should also help at national and international level to shape a new approach to haemophilia by working towards a more standardized outcome assessment. Greater standardization should have implications for data collection, improvements in treatment evaluation and optimizing resources.

Document type Article de périodique (Journal article) – Article de recherche
Access type Accès restreint
Publication date 2012
Language Anglais
Journal information "Haemophilia" - Vol. 18, no. 3, p. 319-325 (2012)
Peer reviewed yes
Publisher Blackwell Science ((United Kingdom) Oxford)
issn 1351-8216
e-issn 1365-2516
Publication status Publié
Affiliations UCL - SSS/IREC/CARD - Pôle de recherche cardiovasculaire
UCL - (SLuc) Service d'hématologie
MESH Subject Blood Coagulation Factor Inhibitors ; Factor VIII ; Hemophilia A ; Hemorrhage ; Humans ; Joint Diseases ; Motor Activity ; Quality of Life
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Bibliographic reference de Moerloose, Philippe ; Fischer, Kathelijne ; Lambert, Thierry ; Windyga, Jerzy ; Bátorová, Angelika ; et. al. Recommendations for assessment, monitoring and follow-up of patients with haemophilia. In: Haemophilia, Vol. 18, no. 3, p. 319-325 (2012)
Permanent URL http://hdl.handle.net/2078/125228