Quality of life assessment in haemophilia

Abstract

Summary. Quality of life (QoL) is a recent focus of research in haemophilia. It can be defined − in analogy to the World Health Organization (WHO) definition of health − as patient‐perceived wellbeing and function in terms of physical, emotional, mental, social and behavioural life domains. The paper describes conceptual, methodological and practical foundations of QoL research in adults and children at an international level. It then proceeds to review the QoL literature in the field of haemophilia. With regard to assessment of QoL in haemophilia patients, both generic and very recently targeted instruments have been applied. Recent publications have focused on describing QoL in adults, showing specific impairments in terms of physical function (arthropathy) and mental wellbeing (HIV infection) as well as focusing on the cost–benefit (QoL) ratio of haemophilia care. In paediatric haemophilia, research has suggested the beneficial QoL outcomes with prophylaxis and stressed the role of the family for patients' wellbeing and function. QoL research is a relevant area for haemophilia research which should be pursued further.