Pro54 Quality of Life in Patients With Hemophilia and Other Coagulation Defects.

Abstract

Adults reported QALY scores 20% higher than caregivers of adults (P=0.01) after ageadjustment. The mean VAS score was 79 (range: 30, 99) among adults, 55 (15, 90) among caregivers of adults, and 68 (30, 100) among caregivers of minors. Adults reported average VAS scores 24 points above caregiver groups after age adjustment (P,0.01). All groups met or exceeded the 75% instrument acceptability agreementrate (P,0.05). Conclusions: EQ-5D was responsive and acceptable for this multinational rare disease sample. While adults consistently rated their health higher than caregivers in preliminary data, the difference between groups was attenuated using the population-derived QALY estimates as compared to self-evaluation using the VAS.