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Surveillance of bleeding disorders, Texas, 2007
Gita G Mirchandani1, John H Drake, Sylvia L Cook
1Texas Department of State Health Services, Austin, Texas, USA. gita@jhu.edu
American Journal of Preventive Medicine
|November 22, 2011
Summary
Estimating hemophilia prevalence in Texas using hemophilia treatment center (HTC) and hospital data provided similar results. These findings support using these methods for better understanding the prevalence of this rare bleeding disorder.
Area of Science:
- Hematology
- Epidemiology
- Public Health
Background:
- Federally funded Hemophilia Treatment Centers (HTCs) in Texas served 1261 patients with bleeding disorders in 2007.
- Passive surveillance via annual HTC visits may underestimate hemophilia prevalence due to infrequent healthcare utilization.
- Accurate prevalence data is crucial for resource allocation and understanding the burden of rare diseases.
Purpose of the Study:
- To compare two distinct methods for estimating hemophilia prevalence in Texas.
- To identify challenges in obtaining valid hemophilia prevalence estimates.
- To validate these methods against active case-finding, the gold standard.
Main Methods:
- Utilized two separate datasets: outpatient data from HTCs and inpatient data from hospital discharge records.
- Calculated annual prevalence estimates for hemophilia A and B among males in Texas for 2007.
- Compared prevalence estimates derived from each data source and against historical active surveillance data.
Main Results:
- HTC data yielded prevalence estimates of 8.9/100,000 for hemophilia A and 2.1/100,000 for hemophilia B.
- Hospital discharge data indicated prevalence rates of 12.3/100,000 for hemophilia A and 2.9/100,000 for hemophilia B.
- Estimates from both methods were comparable to each other and to published active surveillance data.
Conclusions:
- Prevalence estimates for hemophilia derived from Hemophilia Treatment Center (HTC) and hospital discharge data demonstrated consistency.
- These methods offer viable alternatives for estimating hemophilia prevalence, complementing active surveillance.
- Understanding hemophilia prevalence is vital given its rarity, chronic nature, and high treatment costs.
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