Children with Hemophilia (CWH) in the United States

HEMOCAB™ – Using the Hemophilia Associated Caregiver Burden Scale (HEMOCAB™) To Assess Caregiver Burden

ISTH 2015 (Toronto, June 20-25) A poster was presented at the International Society on Thrombosis and Hemostasis (ISTH) 2015 Meeting that discussed the results of a pilot test of 40 US caregivers using the Hemophilia associated Caregiver Burden Scale (HEMOCAB™) scale to assess caregiver burden. Majority of the responders (75%) were mothers of a person with hemophilia (PWH). Majority of responders were married (67.5%), had a child with hemophilia A (95%), and did not have a child with inhibitors (85%). Results showed a significant difference in the average scores among caregivers of CHW with inhibitors (past or current) compared to caregivers of CWH with inhibitors in all categories, except “school”. The results of the pilot test suggest caregiver burden for hemophilia is greater among those whose child ever had inhibitors.


The HEMOCAB instrument validation study was conducted in association with RUSH University Medical Center in Chicago and sponsored by Novo Nordisk Inc.