The state of Indiana had higher hemophilia incidence and prevalence rates, compared with national estimates, according to results from a statewide epidemiologic analysis.
“[The study] aimed to identify all persons with hemophilia, including those not served by an hemophilia treatment center, who resided in Indiana,” Amanda I. Okolo, MPH, of the Indiana Hemophilia and Thrombosis Center, Indianapolis, and her colleagues wrote in Haemophilia.
The researchers retrospectively reviewed medical chart data from federally identified hemophilia treatment centers in Indiana during 2011-2013. Various data sources were used to find hemophilia cases, including administrative claims, clinic reports, and hospital records. The team estimated incidence and prevalence rates using both confirmed and possible cases of hemophilia. With respect to incidence, the calculation was based on the 10 years leading up to the study surveillance period.
“During the study period, 599, 623, and 634 male cases of hemophilia were identified in 2011, 2012 and 2013, respectively, with a total of 704 unique male cases,” the researchers wrote. Among these cases, 35.2% had factor IX deficiency and 64.8% had factor VIII deficiency.
Health care utilization was high among this group of patients, with more than 80% of cases seen at a hemophilia treatment center at least once during the 3-year study period.
The age-adjusted prevalence rate for hemophilia in 2013 was 19.4 cases per 100,000 males. The mean incidence rate over the 10 years leading up to the study period was 30.1 per 100,000, or 1 per 3,688 live male births, noticeably higher than the generally accepted national frequency of hemophilia at about 1 per 5,000 live male births.
“The estimated hemophilia prevalence in Indiana was 45% higher than previously reported in the United States,” the researchers added.
The higher prevalence could be partly caused by improvements in hemophilia care, namely increased adoption of prophylaxis. But a more important factor may be the reduction in HIV infections and the decreasing mortality from HIV among hemophilia patients.
The researchers acknowledged a key limitation of the study was the lack of data on patients assessed in other clinical settings. As a result, the reported rates could be an underestimation.
“Our results may be relevant to other countries where the hemophilia treatment center model is utilized,” they wrote.
No funding sources were reported. The authors reported having no conflicts of interest.
SOURCE: Okolo AI et al. Haemophilia. 2019 Mar 29. doi: 10.1111/hae.13734.