Why should we care about quality of life in persons with haemophilia?


Louis M. Aledort, The Mary Weinfeld Professor of Clinical Research in Hemophilia, Mount Sinai School of Medicine, One Gustave L. Levy Place, Box 1006, New York, NY 10029-6574, USA.
Tel.: +1 212 241 7971; fax: +1 212 987 3326;
e-mail: louis.aledort@mountsinai.org


Summary.  The very high cost of haemophilia care, including the increase in use of factor prophylaxis in both children and adults requires that funders of clotting factor concentrates require objective measures of health, such as joint status and quality of life (QOL). Many clinical trials, especially those for licensing of new products, are including QOL instruments in their protocols to evaluate the patients’ perspective of wellbeing before and during therapy. This article gives a perspective on QOL the importance of QOL measurement in the field of haemophilia and its impact on patient outcome.