Tailoring care to haemophilia patients' needs: which specialty and when?

Abstract

To optimise care for patients with haemophilia, more is required than simply the prompt treatment of an acute bleed; to improve patients’ health and quality of life, the management of patients with haemophilia should also encompass psychosocial support, the prevention of bleeding and joint damage and the avoidance or management of disease and treatment complications such as inhibitor development or the possibility of blood-borne infections1. There is also a growing recognition that patients with haemophilia exhibit significant heterogeneity in terms of their clinical phenotype and response to treatment, and it should be remembered that, “there are not diseases but only patients”. Hence, to optimise treatment, the management should be considered on an individual basis and tailored to each patient and his needs. The European Haemophilia Network (EUHANET) has published management guidelines and the criteria that must be met for centres to be classified as either European Haemophilia Treatment Centres or Comprehensive Care Centres2. In this respect, the World Federation of Hemophilia (WFH) recommends that the wide range and changing needs of patients and their families are best met through a multidisciplinary, comprehensive care team1. This team should comprise a medical director (preferably a paediatrician and/ or adult haematologist), a nurse co-ordinator and musculoskeletal, laboratory and psychosocial health experts. The comprehensive care team should also include, or have access to, other specialists including those with expertise in infectious diseases, chronic pain, hepatology, immunology and genetics1,2. However, results from a UK national audit3 and European surveys4,5 show that not all patients receive a high standard of comprehensive care, and many centres have limited or no access to the recommended specialists (Figure 1). Open in a separate window Figure 1 Access to specialist care for people with bleeding disorders: results reported in a survey of 35 European centres5.