UH Rainbow Providing Home Monitoring App to Caregivers of Infants with Complex Congenital Heart Disease

Innovations in Pediatrics - Winter 2018 

Nancy Dobrolet, MD Nancy Dobrolet, MD

Complex congenital heart disease present a caregiving conundrum. Monitoring them in a hospital environment before a first or second surgery provides the most immediate access to the expertise of the pediatric cardiology team. However, a sometimes months-long stay in the hospital is not optimal for the baby’s overall development.

To work around these challenges, the pediatric cardiology team at University Hospitals Rainbow Babies & Children’s Hospital is using an iPad-based app that allows the infant’s parents or other caregivers to input important data for the care team to review in real time, while keeping the baby in the comfort of the home. UH Rainbow is the first pediatric heart program in Northern Ohio to use the technology.

The app, used in a program called Hearts at HOME (High-risk Outpatient Monitoring & Education), was developed by Charlottesville, Virginia-based Locus Health, a provider of remote patient care solutions. To use it, caregivers input daily data on the baby’s weight, pulse oxygen, nutritional input, wet diapers and any possible vomiting. Parents can also upload photos, add a note to a data entry or use a secure FaceTime connection to talk directly with the pediatric cardiology team.

“This technology is a wonderful new resource for our patient’s families and for all our clinicians that monitor these high-risk newborns,” says Hearts at HOME lead Jodi Zalewski, pediatric nurse practitioner at UH Rainbow. “We are finding the app helps to reduce confusion and anxiety for families during what can be an overwhelming time of their lives. If there’s anything that’s off for the day, the parents can put in a note and we’ll be able to see that in real time.”

“The key is that we’re able to monitor the infant’s changing physiology,” says Nancy Dobrolet, MD, Director, Pediatric Cardiac Step Down, UH Rainbow Babies & Children’s Hospital and Clinical Instructor of Pediatrics, Case Western Reserve University School of Medicine. “We can intervene more quickly if we see that a patient’s oxygen saturations are going down at home or there’s a significant change in their feeding. We can bring them in and admit them to the hospital, as opposed to them being in the hospital during the whole interstage period between congenital heart surgeries, which could be as much as four or five months.”

The Hearts at HOME program has been in use among UH Rainbow families since August 2017. So far, the reviews are enthusiastic.

“The families really like it because we know all the pertinent information before we call them or see them in their visit,” Dr. Dobrolet says. “We used to be on the phone for a half an hour, just doing calculations, trying to figure all that out. Now we can have a plan for the patient before we even call the family.”

In addition to greater satisfaction for patient families, Dr. Dobrolet says she expects Hearts at HOME will lead to better medical outcomes for her patients with complex congenital heart disease.

“The goal of Hearts at HOME is to prevent life-threatening events, maximize babies’ growth and development and provide families with education and support,” she says. “We hope that it will decrease mortality. There is a study of home monitoring simply using a binder that showed that it decreased mortality, so we’re hopeful this will do the same.”

Hearts at HOME is part of The Congenital Heart Collaborative, a partnership formalized two years ago between UH Rainbow and Nationwide Children’s in Columbus, which brings together expert physicians, surgeons and teams to provide world-class care for patients and families.

For more information about Hearts at HOME, email Peds.Innovations@UHhospitals.org.

 

Watch the video Hearts at Home

Share
Facebook
Twitter
Pinterest
Email
Print