Quality of life in women with bleeding disorders.
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Quality of life in women with bleeding disorders. / Mackensen von, Sylvia.
In: HAEMOPHILIA, Vol. 17 Suppl 1, 2011, p. 33-37.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
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TY - JOUR
T1 - Quality of life in women with bleeding disorders.
AU - Mackensen von, Sylvia
PY - 2011
Y1 - 2011
N2 - The assessment of health-related quality of life (HRQOL) has been increasingly used over the last years, is regarded one of the most relevant health outcome measures and is included as secondary and primary endpoint in clinical and observational trials. Bleeding disorders and their treatment impact on patients' HRQOL, especially in women with bleeding disorders and can affect the everyday life of patients and their families. In women with inherited bleeding disorders, menorrhagia is the most common symptom, manifest by significant bleeding and pain leading to limitation in conducting daily activities and changes in social functioning with an adverse effect on women's HRQOL. Only few studies used validated questionnaires for the assessment of HRQOL in women with bleeding disorders, mainly generic instruments. Few disease-specific instruments are available for the adequate assessment of the impact of menorrhagia on HRQOL, namely the Ruta Menorrhagia Severity Scale, the menorrhagia multi-attribute utility scale and the Menorrhagia Impact Questionnaire. The von Willebrand disease (VWD)-QOL questionnaire, a disease-specific questionnaire for patients with VWD contains a specific dimension 'menstruation' for women. These studies revealed that menorrhagia has a larger impact on HRQOL in women with inherited bleeding disorders compared with women with normal haemostasis. Moreover, age, type of VWD and gender have an influence on the HRQOL of patients with VWD. The need of disease-specific instruments for an adequate assessment of HRQOL in women with bleeding disorders could be demonstrated in these studies.
AB - The assessment of health-related quality of life (HRQOL) has been increasingly used over the last years, is regarded one of the most relevant health outcome measures and is included as secondary and primary endpoint in clinical and observational trials. Bleeding disorders and their treatment impact on patients' HRQOL, especially in women with bleeding disorders and can affect the everyday life of patients and their families. In women with inherited bleeding disorders, menorrhagia is the most common symptom, manifest by significant bleeding and pain leading to limitation in conducting daily activities and changes in social functioning with an adverse effect on women's HRQOL. Only few studies used validated questionnaires for the assessment of HRQOL in women with bleeding disorders, mainly generic instruments. Few disease-specific instruments are available for the adequate assessment of the impact of menorrhagia on HRQOL, namely the Ruta Menorrhagia Severity Scale, the menorrhagia multi-attribute utility scale and the Menorrhagia Impact Questionnaire. The von Willebrand disease (VWD)-QOL questionnaire, a disease-specific questionnaire for patients with VWD contains a specific dimension 'menstruation' for women. These studies revealed that menorrhagia has a larger impact on HRQOL in women with inherited bleeding disorders compared with women with normal haemostasis. Moreover, age, type of VWD and gender have an influence on the HRQOL of patients with VWD. The need of disease-specific instruments for an adequate assessment of HRQOL in women with bleeding disorders could be demonstrated in these studies.
KW - Adult
KW - Humans
KW - Aged
KW - Female
KW - Middle Aged
KW - Adolescent
KW - Questionnaires
KW - Young Adult
KW - Health Status
KW - Health Status Indicators
KW - Great Britain
KW - Quality of Life
KW - Menorrhagia/psychology
KW - von Willebrand Diseases/psychology
KW - Adult
KW - Humans
KW - Aged
KW - Female
KW - Middle Aged
KW - Adolescent
KW - Questionnaires
KW - Young Adult
KW - Health Status
KW - Health Status Indicators
KW - Great Britain
KW - Quality of Life
KW - Menorrhagia/psychology
KW - von Willebrand Diseases/psychology
U2 - 10.1111/j.1365-2516.2011.02563.x
DO - 10.1111/j.1365-2516.2011.02563.x
M3 - SCORING: Journal article
VL - 17 Suppl 1
SP - 33
EP - 37
JO - HAEMOPHILIA
JF - HAEMOPHILIA
SN - 1351-8216
ER -