Chatzifragkou I., Gauci J. S., Gauci J. M., Cilia J., Gatt A., Kucher, A., Skinner, M. W. (2025, August). Bridging the gap: real-world quality of life differences between people with and without hemophilia in Malta. (2026), Abstract PO079. Haemophilia, 32: 4-224. https://doi.org/10.1111/hae.70195
Introduction
The Patient-Reported Outcomes, Burdens and Experiences (PROBE) questionnaire captures the real-world impact of hemophilia from the patient perspective. Malta is an island with a population of ∼620, 000 people. This analysis presents Malta’s results as part of PROBE, comparing people with hemophilia (PwH) to people without bleeding disorders (PWoBD).
Methods
This was a cross-sectional, observational study. The PROBE questionnaire includes demographic, clinical, and health-related quality of life domains. Comparisons were descriptive, as the study was not powered for inferential testing.
Results
10 PwH and 10 PWoBD participated. Average age of PwH was 38.6 ± 15.4 years compared to 55.6 ± 12.9 years among PWoBD, with similar education levels (14.1 ± 4.3 vs. 15.8 ± 4.8 years, respectively). Most PwH (60%) had hemophilia A, with half reporting severe disease (factor <1%), 30% moderate, and 10% mild. Regular prophylaxis was used by 50% of PwH, while 20% received intermittent prophylaxis, 20% on-demand treatment.
75% of PwH were married, though none had children, vs 90% of PWoBD who were married with 80% of whom had children. Mobility limitations were reported by 10% of PwH, and 50% used pain medication at least occasionally. Acute pain was reported by 50% of PwH and chronic pain by 60%, often localized to problem joints (50%). By contrast, only two PWoBD (20%) reported acute pain and one reported chronic pain. Activities of daily living were affected in 40% of PwH, and health-related decisions about education or career were influenced in 40% as well. Among PwH, 10% were unemployed due to health, 70% were working full- or part-time.
Bleeding episodes remained moderate: 30% of PwH reported bleeding within the previous 2 weeks, and 50% had problem joints. Limitations in joint movement were observed in 30% of PwH, and 60% had undergone joint surgery, compared with only 10% among PWoBD. PwH missed an average of 43.5 ± 109.7 days of work/school versus 4.5 ± 5.4 days among PWBD. Quality
of life (QOL) measures reflected the same disparity: the EQ-5D index averaged 0.79 ± 0.18 in PwH versus 0.94 ± 0.05 in PWoBD, and the PROBE score was 0.82 ± 0.17 compared with 0.97 ± 0.03.
Conclusion
Findings reveal that Maltese PwH experience a substantially lower QOL compared with PWoBD, driven by higher pain prevalence, more frequent bleeding, reduced mobility, and significant productivity losses.
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