PB0493 - Single Center cross-sectional study on health related quality of life in people with hemophilia

Background: Pain, functional impairment, anxiety, and depression associated with joint disease may affect health-related quality of life (HRQoL) in people with hemophilia (PwH). Generic and disease-specific patient-reported outcome (PRO) instruments have been used in clinical studies, but rarely in the comprehensive hemophilia care setting for individual assessment or treatment planning.

Aims: To evaluate the quality of life our PwH

Methods: Ninety PwH with Factor VIII or Factor IX below 10 U/dL aging from 5 to 80, median 41 (mild: N=32, moderate: N=9, severe: N=49 ) attending the Hemophilia Treating Center of Giannina Gaslini Hospital in Genova, Italy who consented to participate were enrolled. Fifty-four were on long-term prophylaxis. HRQoL was measured by a standard PRO instrument (EQ-5D-5L, EuroQoL, Rotterdam, The Netherlands). EQ-5D-5L index was calculated basing on available value set
Results were compared to Italian General population (IGP) data and to data from recently published data from North European PwH . Moreover, data from patients who started prophylaxis in the first years of age (≤30 yo) were compared to data reported from older patients (≥ 45 YO).

Results: No difference resulted between our and published data in severe Hemophilia and in the age range 18-34 between PWH and IGP. Patient who early started prophylaxis scored significantly higher scores than older patients (Table1).
Our cohort as a whole significantly scored lower that IGP (Table1); nevertheless, the anxiety/depression dimension does not differ between the two groups (Figure 1).

Conclusion(s): Our survey demonstrates that the analyzed PwH report substantially good levels of HRQoL. Our data are comparable with the published data and demonstrate more physical impairment of PwH when compared to general population. Interestingly, the anxiety and depression affect similarly in the two groups, suggesting that the disease related impairments does not affect their emotional area. This confirms the effectiveness of our global care approach to haemophilia