title: Why should we care about quality of life in persons with haemophilia?
abstract: 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.
authors.affiliation: Mount Sinai School of Medicine, Department of Medicine, Division of Hematology/Oncology, New York, NY 10029-6574, USA. louis.aledort@mountsinai.org
authors.forename: L
authors.initials: L
authors.lastname: Aledort
authors.forename: M
authors.initials: M
authors.lastname: Bullinger
authors.forename: S
authors.initials: S
authors.lastname: von Mackensen
authors.forename: J
authors.initials: J
authors.lastname: Wasserman
authors.forename: N L
authors.initials: NL
authors.lastname: Young
authors.forename: D
authors.initials: D
authors.lastname: Globe
mesh_terms: D006305:Health Status Indicators; D006467:Hemophilia A / Q000188:drug therapy / Q000266:history / Q000523:psychology*; D049673:History, 20th Century; D049674:History, 21st Century; D049690:History, Ancient; D006801:Humans; D007349:Insurance, Health, Reimbursement; D017063:Outcome Assessment, Health Care / Q000266:history / Q000379:methods*; D011788:Quality of Life