Abstract
Introduction Optimizing hemophilia care remains challenging in developing countries. Burden-of-disease studies are important to develop strategies for improving hemophilia care. Aim The HAEMOcare study evaluated the factors contributing to hemophilia-related orthopedic disease burden in developing countries. Methods HAEMOcare was a noninterventional, cross-sectional, epidemiological study conducted in Algeria, India, Morocco, Oman, and South Africa. Male patients with severe hemophilia ( N = 282) aged ≥6 years, without or with inhibitors, being treated on-demand for bleeding were included. Hemophilia-related orthopedic clinical and functional status was assessed using the Hemophilia Joint Health Score (HJHS), radiological status with the Pettersson Score, and quality of life with the EuroQol five-dimension questionnaire (EQ-5D-3L). Direct and indirect economic costs of hemophilia care were also calculated. Results Patients (mean [standard deviation, SD] age: 20.8 [10.6] years) experienced a mean annualized bleeding rate of 25.8. Overall mean (SD) HJHS and Pettersson score were 17.9 (12.8) and 15.0 (13.5), respectively; scores were similar between patients without or with inhibitors ( p = 0.21 and 0.76, respectively). Approximately 70% of adults reported problems relating to pain/discomfort and mobility parameters in the EQ-5D-3L. Mean distance to a hemophilia treatment center (HTC) was 79.4 km. As expected, total costs of hemophilia were statistically significantly higher in patients with inhibitors versus without inhibitors ( p = 0.002). Conclusion Inadequate access to HTCs and expert care, along with high bleeding rates, led to equivalent hemophilia-related orthopedic morbidity between hemophilia patients without and with inhibitors. HAEMOcare documented the economic and disease burdens associated with suboptimal hemophilia care in developing countries.
Highlights
Optimizing hemophilia care remains challenging in developing countries
HAEMOcare documented the economic and disease burdens associated with suboptimal hemophilia care in developing countries
Secondary objectives were to evaluate the relationship of previous disease management to current disease status, patient quality of life (QoL), and the economic burden associated with hemophilia treatment
Summary
Burden-of-disease studies are important to develop strategies for improving hemophilia care. Aim The HAEMOcare study evaluated the factors contributing to hemophilia-related orthopedic disease burden in developing countries. The development of inhibitors against clotting factors and chronic arthropathy remains major causes of morbidity.[1] In developing countries, with limited resources and limited or no access to any treatment, optimizing hemophilia care services can be beneficial for all patients. Large-scale observational studies have evaluated hemophilia-related orthopedic status and outcomes such as quality of life (QoL) and resource consumption, to consider risk factors for poor outcomes and improve disease management.[2,3,4,5,6,7] Few studies have been reported from developing countries.[8,9,10] Burden-of-disease studies are needed in developing nations to prioritize determinants of hemophilia care and to formulate adapted management strategies to improve outcomes
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