State surveillance capabilities for critical congenital heart disease (CCHD) in newborns increased from 2010 to 2011, but many programs still suffer infrastructure and resource burdens, a CDC survey found.

Of the 43 states with birth defect surveillance programs, the number of states screening for CCHD increased from one in 2010 to 10 in 2011, according to Jill Gildewell, MSN, of the CDC, and colleagues.

At least half of states in the survey reported having insufficient funding or staffing, an inability to regulate or legislate the program, or were stalled at the planning stages, the researchers wrote in the Oct. 26 issue of Morbidity and Mortality Weekly Report.

The CDC and National Birth Defects Prevention Network surveyed state birth defect surveillance programs in November 2010 and 2011 “to assess ... potential roles, capabilities, and readiness to assist with newborn screening activities for CCHD.”

In 2010, a Department of Health and Human Services advisory committee recommended “that all newborns be screened for CCHD” using a noninvasive test of blood oxygenation to prevent mortality and morbidity.

In September 2011, HHS approved the screening recommendations.

CCHD can put infants at risk for serious health complications, such as end-organ damage, motor function impairments, and cognitive impairments, within days of birth. The authors noted that congenital heart disease occurs in eight of every 1,000 live births, and that one in four of those births are defined as CCHD.

The survey found that, in addition to the increase in the number of state screening programs, an additional 28 states reported the ability to evaluate mortality associated with the condition, 16 said they could evaluate CCHD morbidities, 11 could evaluate CCHD interventions, and 13 programs could evaluate all true-false and false-negative screening results.

However, many of the 10 state programs adopting the new screening target reported a number of conflicts during the 2011 analysis. This included eight states that did not have sufficient funds for the program, nine states without sufficient staffing, five states without legislation or regulatory authority for the program, and nine states that had not moved past the planning stages of implementation, Gildewell and co-authors wrote.

They added that 67% of program representatives said it took 12 or more months “to complete birth defects surveillance case records” and that 68% of programs “did not have access to hospital point-of-care screening records.”

The authors recommended that states “evaluate infrastructure and resource needs before adoption of screening for CCHD to ensure a successful screening program.”

They added that their survey was limited by missing responses to some questions from some states and that only state birth defect surveillance programs - as opposed to other state public health programs that could potentially screen for CCHD - were surveyed.

Primary source: Morbidity and Mortality Weekly Report
Source reference: Gildewell J, et al “Newborn screening for critical congenital heart disease: potential roles of birth defects surveillance programs—United States, 2010-2011” MMWR 2012; 61(42): 849-853.