Quality of life assessment in haemophilia
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Quality of life assessment in haemophilia. / Bullinger, Monika; von Mackensen, Sylvia.
in: HAEMOPHILIA, Jahrgang 10 Suppl 1, 03.2004, S. 9-16.Publikationen: SCORING: Beitrag in Fachzeitschrift/Zeitung › SCORING: Review › Forschung
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TY - JOUR
T1 - Quality of life assessment in haemophilia
AU - Bullinger, Monika
AU - von Mackensen, Sylvia
PY - 2004/3
Y1 - 2004/3
N2 - 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.
AB - 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.
KW - Adult
KW - Biomedical Research
KW - Child
KW - Forecasting
KW - Hemophilia A
KW - Humans
KW - Quality of Life
KW - Journal Article
KW - Review
M3 - SCORING: Review article
C2 - 14987244
VL - 10 Suppl 1
SP - 9
EP - 16
JO - HAEMOPHILIA
JF - HAEMOPHILIA
SN - 1351-8216
ER -