Disease-specific quality-of-life measurement tools for haemophilia patients.
The purpose of this paper is to summarize the state of the art in measuring quality of life in haemophila populations. The paper reviews the measures recently included in haemophila trials in the published literature. It also summarizes the development of four new disease-specific measures of health-related quality of life. Two of these were developed for children (the Haemo-QoL and the CHO-KLAT), and two for adults (the Hemofilia-QoL and the Hemolatin-QoL). These new measures show promise for use in clinical trials. Further research is in progress to complete the psychometric testing and cross-cultural validation.
Universidad Autonona de Madrid, 28049 Madrid, Spain. eduardo.remor@uam.es
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Remor
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Young
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Von Mackensen
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Lopatina
D000293:Adolescent; D000328:Adult; D002648:Child; D004185:Disability Evaluation; D006467:Hemophilia A / Q000534:rehabilitation*; D006801:Humans; D017063:Outcome Assessment, Health Care / Q000379:methods / Q000592:standards; D011788:Quality of Life; D015203:Reproducibility of Results; D011795:Surveys and Questionnaires / Q000592:standards