How Children's National Health System took on an advocacy role to improve identification of newborns with congenital heart disease.
When a baby is born with critical congenital heart disease, early identification and intervention of the birth defect is critical to the child's outcome. Three out of 1,000 newborns are born with CCHD, and if a newborn is discharged home before the defect is identified, significant damage to the heart, brain and other systems may result, often leading to developmental delay and, in some cases, death.
Physicians traditionally screened for CCHD through fetal ultrasound or newborn physical assessment, during which they looked for any signs of discoloration that might signal cyanosis. These two methods identify only roughly 50 percent of newborns with CCHD. But, recent research suggests when pulse oximetry is added as a third method, the detection rate jumps to nearly 98 percent.
Pulse oximetry is a noninvasive test to measure oxygen saturation of the hemoglobin in arterial blood, as well as the pulse rate. Adhesive sensors are placed on a newborn's right hand and foot, and clinicians administering the test look for oxygenation rates below 95 percent, or a difference of 4 percent or more between the hand and foot — both of which could signal a CCHD.
Because of this, the American Academy of Pediatrics, American College of Cardiology and the American Heart Association in 2011 recommended the use of pulse oximetry to detect CCHD. That same year, the U.S. Department of Health and Human Services also added pulse oximetry to its Recommended Uniform Screening Panel.
Gerard Martin, MD, co-director of the Children's National Heart Institute and the team at Children's National Health System in Washington, D.C., felt strongly that pulse oximetry screening could help ensure CCHD identification occurred as quickly as possible, improving the outcomes of some of their sickest patients.
But, despite the benefits of pulse oximetry to detect CCHD, hospitals overall have been somewhat slow to adopt its use, and those in D.C. were no exception.
One persistent reason for the slow adoption was a lack of understanding by medical staff of its need. Physicians were confident they wouldn't miss the signs of CCHD during the newborn physical assessment, yet babies continued to present to emergency rooms across the country with undiagnosed CCHD.
While Children's National doesn't deliver babies, its ER and cardiovascular surgeons treated several babies each year with previously undetected CCHD. While the number of annual cases was in the single digits, the delayed detection was devastating for the families involved.
"Babies were discharged from their hospital of birth because they looked well, but then they'd come back through the ER, or other times, CCHD was identified only after an autopsy," explains Lisa A. Hom, RN, Esq., clinical program manager for the Critical Congenital Heart Disease Screening Program at Children's National.
Becoming an advocate
Children's National and its pediatric cardiology team felt strongly about the benefits of pulse oximetry for its CCHD patients and wanted to help to spread its adoption. Children's National's advocacy efforts started on a local level; it formed a congenital heart disease screening program, which first partnered with physician groups and hospitals that referred CCHD babies to Children's National.
The program helped educate physicians on the need for pulse oximetry, explaining the statistics of missed defects and the difficulty of using physical coloring changes as a marker of CCHD in newborns.
Children's National's screening group also worked directly with hospitals in the Washington, D.C., metro area, educating physicians and medical staff leaders on the need for pulse oximetry. When the group began its efforts in 2009, only one hospital in the area used pulse oximetry testing. Now all seven hospitals in D.C. with newborn nurseries use pulse oximetry as part of standard wellness screening for all newborns.
The last hospital that signed on began using pulse oximetry last October, helped in part by a grant from the Masimo Foundation. Masimo, a maker of pulse oximeters, has loaned the equipment to D.C. hospitals for the period of three years.
"We now know that every newborn should be screened for critical congenital heart disease. Failure to detect CCHD in infants too often leads to the tragic deaths of babies who may have been saved," says Joe Kiani, CEO of Masimo and founder of the Masimo Foundation for Ethics, Innovation, and Competition in Healthcare, of the grant. "Through our Foundation, and working in partnership with organizations such as Children¹s National Health System, we have the ability to create a world where every newborn is properly screened and given the chance to live."
The D.C.-area project also aims to uncover reasons behind protocol violations or any baby that is missed during screening. Children's National, in partnership with the D.C. hospitals, formed a quality improvement collaborative, participating in continuous quality improvement to identify ways to improve the screening process and pulse oximetry implementation.
Ms. Hom is pleased with her program's efforts in D.C., and has already set her sights on improving CCHD detection rates nationally and internationally.
Currently, 33 states have either a regulation or legislation in place that would require pulse oximetry screening of newborns. A representative from Children's National testified when the first state to mandate the screening, Maryland, was considering the measure. Many of the state laws were passed in just the last year; in the first half 2013, 20 states mandated pulse oximetry. Compliance effective dates vary by state, but by the end of 2014, over 80 percent of newborns in the U.S. will benefit from pulse oximetry screening, Ms. Hom says.
"It's very exciting to see, just in the span of two years, almost no states requiring it to many states requiring it," she adds.
Several state departments of health, including those in Alaska, Utah and Missouri, are using a toolkit developed by Children's National to roll out pulse oximetry screening in their states.
The toolkit aims to make the use of pulse oximetry easy to implement so each hospital or health department is saved form "reinventing the wheel," says Ms. Hom.
The toolkit has also been translated into Arabic, Dutch and Spanish so that public health workers around the world can use it to help promote the adoption of pulse oximetry outside the U.S.
In addition, Children's National has assisted with implementation of pulse oximetry screening in the United Arab Emirates and Kuwait, with over 50,000 babies screened and 21 cases of CCHD detected.