Quality of life and sports activities in patients with haemophilia
- 7 August 2007
- journal article
- review article
- Published by Wiley in Haemophilia
- Vol. 13 (s2), 38-43
- https://doi.org/10.1111/j.1365-2516.2007.01505.x
Abstract
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.Keywords
This publication has 39 references indexed in Scilit:
- Factors which may influence coping with disease in haemophilia patientsHaemophilia, 2004
- Clinical severity of disease, functional disability and health-related quality of life. Three-year follow-up study of 150 Finnish patients with coagulation disordersHaemophilia, 2001
- Clinical severity of disease, functional disability and health‐related quality of life. Three‐year follow‐up study of 150 Finnish patients with coagulation disordersHaemophilia, 2001
- Total joint arthroplasty in haemophiliaHaemophilia, 2000
- Sports and HemophiliaPublished by Ovid Technologies (Wolters Kluwer Health) ,1996
- The meaning in life scale: Determining the reliability and validity of a measureJournal of Chronic Diseases, 1987
- Standards for validating health measures: Definition and contentJournal of Chronic Diseases, 1987
- Changes in coagulation parameters with exercise in patients with classic hemophiliaAmerican Journal of Hematology, 1984
- Validity of a quality of well-being scale as an outcome measure in chronic obstructive pulmonary diseaseJournal of Chronic Diseases, 1984
- The Nottingham health profile: Subjective health status and medical consultationsSocial Science & Medicine. Part A: Medical Psychology & Medical Sociology, 1981