Abstract Number: PB0481
Meeting: ISTH 2021 Congress
Background: Hemophilia diagnosis and care varies globally and is dependent on healthcare infrastructure, availability of resources and economic levels.
Aims: To assess diagnosis and care capabilities we analyzed the percentage of severe vs. mild and moderate hemophilia in persons with hemophilia A (PWHA), as reported to the World Federation of Hemophilia (WFH) Annual Global Survey (AGS).
Methods: The AGS is an annual cross-sectional survey. Each year the WFH National Member Organizations (NMOs) are asked to fill out the survey including questions on identified patients and level of hemophilia care. We calculated the percentage of male PWHA with severe disease and explored the change over time and in various economical settings using the gross national income.
Results: In 2010, the percentage of severe PWHA was higher in high income countries (48%) than those in low-income ones (25%) and the percentage of those with unknown severity was higher in low-income countries (Figure 1). Latest survey results in 2019 showed that the proportion of PWHA with severe hemophilia in upper middle- and lower-income countries is similar to those in high income countries. However, the proportion of mild and moderate patients identified remains lower in low-income countries (Figure 2).
Conclusions: The analysis of this indicator shows the change in diagnostic capabilities over time and by economic levels. In both years, as economic status increased, accurate diagnosis improved. Over time, the data shows that diagnosis and reporting in lower income countries have become more accurate, as the percentage of severe disease increased, and percentage of unknown severity reduced. Furthermore, there has been improvement in diagnosis of mild patients in upper middle countries, but more progress needs to be made in lower middle- and low-income countries. In conjunction with other indicators, the proportion of PWHA with severe disease can inform health care development and support planning and decision-making.
To cite this abstract in AMA style:Tootoonchian E, Stonebraker J, El Ekiaby M, Gouider E, Iorio A, Makris M, O'Hara J, Recht M, Pierce G, Coffin D. Analysis of the Percentage of Persons with Severe Hemophilia A as an Indicator of Care [abstract]. Res Pract Thromb Haemost. 2021; 5 (Suppl 2). https://abstracts.isth.org/abstract/analysis-of-the-percentage-of-persons-with-severe-hemophilia-a-as-an-indicator-of-care/. Accessed October 2, 2023.
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