期刊
HAEMOPHILIA
卷 15, 期 4, 页码 843-852出版社
WILEY
DOI: 10.1111/j.1365-2516.2008.01961.x
关键词
factor VIII; haemophilia; health status; primary prophylaxis; quality of life; utility
类别
资金
- Bayer HealthCare LLC, Biological Products Division
- Baxter BioScience
- CSL Behring, and Wyeth Pharmaceuticals
- Hospital for Sick Children Foundation, Toronto, Canada
- Canadian Institutes for Health Research
Patient-reported outcome (PRO) measures have been used to assess quality of life and health state preferences from the patient's perspective. However, they have not been fully utilized in haemophilia clinical practice and research. A series of meetings were convened to review and document the state of the art in PROs relevant to haemophilia. Experts developed a process for selection of measures and identified published measures of health-related quality of life (HRQoL) relevant to patients with haemophilia. These were synthesized and reviewed. Patient preference measures were also identified and reviewed. Although the majority of measures were developed for and validated in adults, several measures were identified for use in paediatric populations. This paper recommends an approach to the selection of PROs for application in haemophilia clinical research and practice and identifies several potential measures relevant for application in haemophilia clinical research and practice.
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