title: Quality of life in women with bleeding disorders.
abstract: 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.
authors.affiliation: Institute for Medical Psychology and Policlinics, Centre of Psychosocial Medicine, University Medical Centre of Hamburg-Eppendorf, Hamburg, Germany. s.mackensen@uke.uni-hamburg.de
authors.forename: S
authors.initials: S
authors.lastname: Von Mackensen
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D005260:Female; D006304:Health Status; D006305:Health Status Indicators; D006801:Humans; D008595:Menorrhagia / Q000523:psychology; D008875:Middle Aged; D011788:Quality of Life; D011795:Surveys and Questionnaires; D006113:United Kingdom; D055815:Young Adult; D014842:von Willebrand Diseases / Q000523:psychology*