Quality of life and sports activities in patients with haemophilia

TY - JOUR

T1 - Quality of life and sports activities in patients with haemophilia

AU - VON Mackensen, S

PY - 2007/9

Y1 - 2007/9

N2 - Quality of life (QoL) is a multidimensional construct pertaining to an individual's physical, emotional, mental, social and behavioural components of well-being and functioning. QoL can be assessed using both generic and disease-specific instruments. QoL assessment in haemophilia is a relatively new area of study; the first data were published in 1990 using generic QoL questionnaires. Only recently have haemophilia-specific questionnaires been developed, first for children and then for adults. Because sports activities include not only physical and functional aspects, but also have an impact on an individual's self-esteem and social interactions, they should play an essential role in QoL assessment. Until the 1970s, persons with haemophilia were advised to avoid any kind of physical activity because of the risk of bleeds. Nowadays, however, the attitude towards sports for patients with haemophilia has changed, and the World Federation of Haemophilia has formulated recommendations concerning physical activities for patients with haemophilia. Although sports activities are recommended, their importance as an integral element in haemophilia management has not yet been widely recognized. Awareness of the importance of sports activities for this patient group has increased, and several sports projects are ongoing. For example, a twice-annual sports camp for adult patients has been held in Germany for the past 2 years; and physical improvements, QoL and subjective training effects are being measured. Another study is investigating the prevalence of sports activities in Italian children with haemophilia and their attitudes towards sports and is also assessing QoL. In Israel, a study is planned in which haemophilic children will participate in a karate training programme, and a QoL evaluation will be added to the physical assessment. In conclusion, sports activities can improve not only physical well-being, but also the emotional and social well-being of persons with haemophilia and, therefore, should become part of the global approach to haemophilia management.

AB - Quality of life (QoL) is a multidimensional construct pertaining to an individual's physical, emotional, mental, social and behavioural components of well-being and functioning. QoL can be assessed using both generic and disease-specific instruments. QoL assessment in haemophilia is a relatively new area of study; the first data were published in 1990 using generic QoL questionnaires. Only recently have haemophilia-specific questionnaires been developed, first for children and then for adults. Because sports activities include not only physical and functional aspects, but also have an impact on an individual's self-esteem and social interactions, they should play an essential role in QoL assessment. Until the 1970s, persons with haemophilia were advised to avoid any kind of physical activity because of the risk of bleeds. Nowadays, however, the attitude towards sports for patients with haemophilia has changed, and the World Federation of Haemophilia has formulated recommendations concerning physical activities for patients with haemophilia. Although sports activities are recommended, their importance as an integral element in haemophilia management has not yet been widely recognized. Awareness of the importance of sports activities for this patient group has increased, and several sports projects are ongoing. For example, a twice-annual sports camp for adult patients has been held in Germany for the past 2 years; and physical improvements, QoL and subjective training effects are being measured. Another study is investigating the prevalence of sports activities in Italian children with haemophilia and their attitudes towards sports and is also assessing QoL. In Israel, a study is planned in which haemophilic children will participate in a karate training programme, and a QoL evaluation will be added to the physical assessment. In conclusion, sports activities can improve not only physical well-being, but also the emotional and social well-being of persons with haemophilia and, therefore, should become part of the global approach to haemophilia management.

KW - Female

KW - Hemarthrosis

KW - Hemophilia A

KW - Humans

KW - Male

KW - Physical Fitness

KW - Quality of Life

KW - Surveys and Questionnaires

KW - Journal Article

KW - Research Support, Non-U.S. Gov't

KW - Review

U2 - 10.1111/j.1365-2516.2007.01505.x

DO - 10.1111/j.1365-2516.2007.01505.x

M3 - SCORING: Review article

C2 - 17685923

VL - 13 Suppl 2

SP - 38

EP - 43

JO - HAEMOPHILIA

JF - HAEMOPHILIA

SN - 1351-8216

ER -