Assessing Quality of Life in Individuals with Hereditary Blood Coagulation Disorders

The aim of this study was to test the reliability and validity of the SF-36 questionnaire among the patients with hereditary blood coagulation disorders, to compare their quality of life (QoL) to that of healthy controls, and to identify the dimensions of life the patients consider most important. Results showed that the SF-36 questionnaire had good internal consistency reliability and construct and known group validity in individuals with hereditary blood coagulation disorders. Leisure activities/hobbies, availability of work/ study, followed by relationships with other people, own health and relationships with family/relatives appeared most frequently across the patients' and controls' priority ranks. The areas affected most by the disease were financial security, own health and relationships with family/relatives. A comparison of standardized scale scores suggests that blood coagulation disorders are diseases with a predominantly physical impact. Patients with blood coagulation disorders had health-related quality of life that was lower in most domains compared to healthy controls. However, when a wider concept of QoL was applied no differences between the patients' and controls' perceived QoL could be noted.