Investigators Publish Two Studies Using UDC Data

Horizons in Hemophilia, March 2012

Submitted by the National Hemophilia Foundation

A pair of studies in the December 2011 edition of the American Journal of Preventive Medicine highlighted some notable findings from data collected by the Centers for Disease Control and Prevention (CDC).

In the first study, “Insurance, Home Therapy, and Prophylaxis in U.S. Youth with Severe Hemophilia,” the authors reviewed data from the CDC’s Universal Data Collection (UDC) project, a voluntary surveillance system that relies on patient enrollment. The lead author of the study was Judith R. Baker, MHSA Department of Pediatric Hematology/Oncology, University of California Los Angeles.

Included in the study was a nationwide cohort of 3,380 boys and young men with severe hemophilia A or B, ages 2-20 years old, all of whom had received care at a federally funded hemophilia treatment center (HTC) between January 1, 2008, and December 31, 2010.

The results showed that 90% of patients used home therapy and 78% were on a prophylaxis treatment regimen. Only 2% were uninsured. Investigators found that those with health insurance were much more likely to be on prophylaxis (77%) vs. those who were uninsured (21%). The data also showed significant correlations between race, age, inhibitor status, and HTC use, home therapy use and prophylaxis.

“Youth with severe hemophilia who annually obtain care within the U.S. HTC network had a high level of health insurance, home therapy, and prophylaxis. Exploration of factors associated with insurance coverage and yearly HTC utilization, and interventions to optimize home infusion and prophylaxis among youth of African-American and ‘other’ race/ethnic backgrounds are warranted,” concluded Baker and her colleagues.

Investigators also drew on UDC data for the second study, “Physical Functioning in Boys with Hemophilia in the U.S.” The lead author was Paul E. Monahan, MD, Department of Pediatrics, Hematology/Oncology, University of North Carolina at Chapel Hill. Researchers reviewed 15 potential predictors of poor physical functioning in boys with hemophilia A and B (up to 18 years of age) who had received care at an HTC between 1998 and 2008.   
 
They found that several characteristics were associated with limitations of joint function, including increasing age, presence of joint bleeding and inhibitors. African-Americans were also independently associated with activity restrictions. In addition, obesity and medical coverage with Medicaid, as opposed to private health insurance, were independently associated with multiple poor outcomes.

“Interventions focused on eliminating inhibitors, improving outcomes for African-American children with hemophilia, and maintaining healthy body weight are warranted. In addition, strategies are needed to assure adequate insurance coverage for all people with hemophilia to eliminate economic barriers to optimal functional outcomes,” the authors concluded.

Source: Obesity, Fitness & Wellness Week, January 7, 2012