HAEMOcare: The First International Epidemiological Study Measuring Burden of Hemophilia in Developing Countries

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.

Keywords

HAEMOcare - epidemiological study - hemophilia - inhibitors - orthopedic status - quality of life - developing countries

Authors' Contributions

Naresh Gupta designed and performed the research, analyzed the data, and wrote and edited the manuscript. Abderrahmane Benbouzid performed the research and wrote and edited the manuscript. Meriem Belhani wrote and edited the manuscript. Mohammed El Andaloussi performed the research and wrote and edited the manuscript. Khadija Maani performed the research and wrote and edited the manuscript. Yasser Wali designed and performed the research, analyzed the data, and wrote and edited the manuscript. Soraya Benchikh El Fegoun designed the research, analyzed the data, and wrote and edited the manuscript. Hossam Ali Saad designed the research, analyzed the data, and wrote and edited the manuscript. Johnny Mahlangu designed and performed the research, analyzed the data, and wrote and edited the manuscript.

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