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

  • L Aledort
  • Monika Bullinger
  • Sylvia Mackensen von
  • J Wasserman
  • N L Young
  • D Globe
  • Health Related Quality Of Life Expert Working Group Of The International Prophylaxis Study Group

Related Research units

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.

Bibliographical data

Original languageEnglish
Article number3
ISSN1351-8216
Publication statusPublished - 2012
pubmed 22356125