For the parents of children with high-risk, complex congenital heart disease, leaving the hospital is a time of celebration, yet often there’s a sense of trepidation as well. As you’re aware, home care for these children requires careful oversight and ongoing data collection, which can be challenging to maintain. To help alleviate some of this stress — and ensure the child is receiving the very best follow-up care — two clinicians at UVA Children’s Hospital are working to strengthen the link between parents and providers after the patient is discharged from the hospital.
Pediatric cardiologist Jeffrey Vergales, MD, MS, and Leslie Peregoy, MSN, PNP, initiated the development of Building HOPE, a monitoring platform that utilizes an iPad app to simplify some of the daily tasks required for parents to monitor their children. “Now instead of writing down data, such as O2 saturation, weight, intake and output, parents can enter the data electronically using the app,” says Peregoy.
“The key is that when they enter the information, it goes directly into the child’s EMR, so there is a smooth transmission of data from parent to provider,” adds Vergales. “This will allow us to see patient updates daily, so we can monitor changes and initiate interventions more quickly; we want to continue to promote their health rather than waiting for them to get sick.”
Ten families are piloting Building HOPE, helping to evaluate the platform’s functionality and ease of use, and providing feedback on potential improvements. The app is downloaded onto a single-use iPad, along with additional resources, such as answers to common questions and information about the UVA congenital heart program. “Rather than sending parents home with a bunch of papers, they’ll have everything they need all in one place,” says Peregoy. “It’s a great learning tool.”
Moving forward, Vergales says the hope is to eventually utilize the app for all in-home pediatric patient monitoring, and to incorporate video for remote clinical evaluations. “We expect eventually this will reduce the number of clinic visits, which will limit travel time for families far away. Furthermore, we are attempting to reduce length of stay in the hospital by sending patients home with more careful monitoring as we transition them to outpatient care.”
“Ultimately, this is a way for UVA to go home with the patient. We can remain connected from afar, working with their home providers, while avoiding usurping the care the child receives from their local medical team,” says Vergales.
“It’s better engagement for all of us,” adds Peregoy.
Next Steps: Implementation
As the pilot phase comes to a close, all patients in the congenital heart home monitoring program at UVA Children’s Hospital are being sent home with an iPad as part of the Building HOPE platform. “We have quickly realized that other populations in pediatrics, such as new babies being discharged from the neonatal intensive care unit (NICU), patients receiving solid organ transplants or patients undergoing chemotherapy, can benefit from the platform and are starting to be brought into the mix,” says Vergales.