Home Monitoring After Congenital Heart Disease Surgery

Barbara Medoff-Cooper, PhD, CRNP, FAAN, RN was awarded R01 funding from the National Institute of Nursing Research, a division of the National Institute of Health (NIH). Her research will help our REACH program pioneer a new approach to home monitoring for infants who have experienced neonatal surgery for congenital heart disease (CHD).

Home monitoring program for infants with complex CHD

REACH partners with parents to individualize care and help them recognize early changes in their infant's health status before the child is in crisis. The REACH intervention combines daily parent-Advanced Practice Nurse (APN) communication with an innovative use of technology. Parents and APNs will use a clinical information system that harnesses the power of speech technology. The system can be used with any telephone, in combination with video-conferencing and a web-based educational system.

This model will give families the opportunity for visual and audio contact with sub-specialists, and provides a means of home-based, clinical follow-up of high-risk infants during the critical early weeks after congenital heart surgery.

We will conduct a randomized controlled trial (RCT) of the REACH intervention for 250 infants with complex congenital heart disease from two major pediatric cardiac centers. This is the first randomized clinical trial to test the effectiveness of a high-intensity, technology-based home monitoring program in infants with complex CHD.

Infants will receive important state-of-the-art measurements to assess:

  • Infant growth measurements, such as weight, length and head circumference
  • Feeding ability
  • Temperament assessment
  • Parental questions and concerns

Dr. Barbara Medoff-Cooper is the Principal Investigator (PI). Dr. Medoff-Cooper is internationally recognized for her research on infant development, feeding behaviors in high-risk infants, and infant temperament. Her interdisciplinary team consists of nurses, cardiologists, statisticians and bioengineers from The Children’s Hospital of Philadelphia and The University of Pennsylvania. 

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