Medicina

Haemophilia (2012), 18, 319–325

DOI: 10.1111/j.1365-2516.2011.02671.x

REVIEW ARTICLE

Recommendations for assessment, monitoring and follow-up of patients with haemophilia
P. DE MOERLOOSE,* K. FISCHER,  T. LAMBERT,à J. WINDYGA,§ A. BATOROVA,– G. LAVIGNELISSALDE,** A. ROCINO,    J. ASTERMARKàà and C. HERMANS§§
*University Hospital and Faculty of Medicine, Geneva, Switzerland;  VanCreveldkliniek, and Julius Center for Health Sciences and Primary Care, University Medical Center, Utrecht, Netherlands; àCHU Kremlin – Bicetre, Paris, France; §Institute of ` Haematology and Transfusion Medicine, Warsaw, Poland; –Department of Hematology and Transfusion Medicine, National Haemophilia Center, University Hospital, Bratislava, Slovakia; **Centre de Traitement des Hemophiles, Hopital deMontpellier, ´ ˆ France;   Haemophilia and Thrombosis Center, San Giovanni Bosco Hospital, Naples, Italy; ààCentre for Thrombosis and ˚ Hemostasis, Skane University Hospital Malmo, Sweden; and §§Haemostasis-Thrombosis Unit, Division of Haematology, ¨ Cliniques Universitaires Saint-Luc, Brussels, Belgium

Summary. Over the last few decades, clinical followup of patients with haemophilia has becomemore 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-upof 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 atnational 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.
Keywords: follow-up, haemophilia, laboratory exams, outcome, treatment

Introduction
Building on effective replacement therapy,haemophilia care has evolved into a complex and rapidly changing discipline managing patients from birth (and even before) until adulthood. Effective management now encompasses not only treatment of the clotting defect but also its various extra-haematological consequences (musculoskeletal, infectious, immunological, quality of life). These changes have a major impact on the activities and roles ofhaemophilia centres. So far there
Correspondence: Professor P. de Moerloose, Haemostasis Unit, Geneva University Hospital, 1211 Geneva 4, Switzerland. Tel.: +41 22 372 97 51; fax: +41 22 372 98 91; e-mail: Philippe.deMoerloose@hcuge.ch Accepted after revision 15 September 2011 Ó 2011 Blackwell Publishing Ltd

has been no broad initiative to standardize the functioning and requirements of thefollow-up of patients with haemophilia by haemophilia centres. Many countries that are starting to establish care for haemophilia patients do not have standard protocols to ensure the proper management of haemophilia [1]. Several country-specific guidelines for the diagnosis and treatment of haemophilia have been published [2–7]. However, there is no current consensus at a European level. The European...