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báo cáo khoa học:" Content comparison of haemophilia specific patient-rated outcome measures with the international classification of functioning, disability and health (ICF, ICF-CY)"

Tuyển tập báo cáo các nghiên cứu khoa học quốc tế ngành y học dành cho các bạn tham khảo đề tài: Content comparison of haemophilia specific patient-rated outcome measures with the international classification of functioning, disability and health (ICF, ICF-CY) | Riva et al. Health and Quality of Life Outcomes 2010 8 139 http www.hqlo.eom content 8 1 139 HEALTH AND QUALITY OF LIFE OUTCOMES RESEARCH Open Access Content comparison of haemophilia specific patient-rated outcome measures with the international classification of functioning disability and health ICF ICF-CY Silvia Riva1 2 Monika Bullinger1 Edda Amann3 Sylvia von Mackensen1 2 Abstract Background Patient-Reported Outcomes PROs are considered important outcomes because they reflect the patient s experience in clinical trials. PROs have been included in the field of haemophilia only recently. Purpose Comparing the contents of PROs measures used in haemophilia based on the ICF ICF-CY as frame of reference. Methods Haemophilia-specific PROs for adults and children were selected on the grounds of international accessibility. The content of the selected instruments were examined by linking the concepts within the items of these instruments to the ICF ICF-CY. Results Within the 5 selected instruments 365 concepts were identified of which 283 concepts were linked to the ICF ICF CY and mapped into 70 different categories. The most frequently used categories were b152 Emotional functions and e1101 Drugs . Conclusions The present paper provides an overview on current PROs in haemophilia and facilitates the selection of appropriate instruments for specific purposes in clinical and research settings. This work was made possible by the grant of the European Murinet Project Multidisciplinary Research Network on Health and Disability in Europe . Introduction Haemophilia Haemophilia is a rare inherited X-linked coagulation disorder caused by deficiencies of the clotting factor VIII FVIII haemophilia A or of factor IX FIX haemophilia B . The prevalent haemophilia is haemophilia A 1 out of 10 000 inhabitants and for haemophilia B 1 out 30 000 inhabitants . Haemophilia A and B are the most frequent clinically severe inherited bleeding disorders 1 2 . According to factor activity levels