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

Inadequate access to hemophilia treatment centers (HTCs) and expert care is an ongoing problem in developing countries, according to the findings of the HAEMOcare study, published in TH Open.

In this noninterventional, cross-sectional, epidemiology study conducted in five countries (Algeria, India, Morocco, Oman, and South Africa), researchers assessed 282 male patients (aged 6 and above, mean age, 21) with severe hemophilia with or without inhibitors who were being treated on-demand for bleeding episodes. All eligible patients were enrolled between January 2, 2012 and September 3, 2012.

Hemophilia-related orthopedic clinical and functional status were assessed with a combination of the Hemophilia Joint Health Score (HJHS), radiological status with the Pettersson Score, and quality of life (QOL) with the EuroQol five-dimension questionnaire (EQ-5D-3L). The researchers also calculated the economic costs, both direct and indirect, of hemophilia care.

The study findings showed that patients scored 25.8 as a mean annual bleeding rate. The average HJHS and Pettersson scores were 17.9 (12.8) and 15.0 (13.5), respectively, and these scores were similar among patients with or without inhibitors. Moreover, the results showed that in the EQ-5D-3L, 70% of adults in the study reported problems relating to pain and discomfort and mobility parameters. The average distance to an HTC in these given countries was 79.4 km. Overall, the total costs of hemophilia indicated that patients with inhibitors pay more than patients without inhibitors (P = 0.002).

In discussing the study’s limitations, the authors noted the relatively small study population by writing that “this study was only able to enroll 50 patients with inhibitors against a target of 75, limiting its statistical power. Furthermore, much of the data were collected retrospectively, and radiological scores were based on preexisting X-rays.”

Overall, the authors said that the findings stress the need for better care, and wrote that “the results of the study showed that there is a need for wider and earlier comprehensive care, despite patients in HAEMOcare receiving the best standard of care available to them at the time, as expert orthopedic care was offered mainly to patients with more advanced morbidities.” They added that “patients with regular access to orthopedic care showed numerically higher HJHS and Pettersson score than patients without, indicating that access to care may be focused on patients with more severe morbidities or that referrals to an orthopedist are late.”

Read more at TH Open