Multidisciplinary Team Influences Single Ventricle Care Worldwide through technology and Collaboration

January 05, 2024

Single Ventricle Center of Excellence at Lurie Children’s continues to forge ahead, gaining national attention through advanced technology and collaboration ensuring their patients receive the best continuum of care.

The Single Ventricle Center of Excellence at Ann & Robert H. Lurie Children's Hospital of Chicago, led by Kiona Allen, MD, and Michelle Steltzer, APN, offers a continuum of care for patients with functional single ventricle heart disease. Lurie Children’s Single Ventricle team partners with cardiothoracic surgery, interventional cardiology, hepatology, electrophysiology, exercise physiology, developmental therapies, and nutrition within their clinics to provide highly specialized care to patients from fetal diagnosis through adulthood. The team also has a close partnership with Lurie Children's NICU-Cardiac Neurodevelopmental Program, one of only a few programs in the country that provides neurodevelopmental and academic support from birth to adolescence, and ensures that patients with functional single ventricle heart disease are not just physically healthy but thriving as they develop into engaged participants in their own healthcare.

The Single Ventricle team has gained national attention for its innovative integration of technology into the Interstage Home Monitoring (IHM) Program. The high-risk "interstage" period in the first several months of life between the first and second surgeries is a critical time for children with single ventricle physiology. In 2018, the Single Ventricle Center of Excellence converted its program from a paper-and-pencil monitoring system with weekly telephone calls to a tablet-based platform through which caregivers can document daily cares, vital signs, and any concerns that may arise, as well as participate in weekly secure video calls. The team also partners with local pediatricians and emergency technicians to ensure that providers in the community know how to safely triage acute issues for this fragile population. This facilitates the care team’s ability to use real-time data to keep patients safe outside of the hospital and home with their families as much as possible. Since 2018, the team has digitally monitored over 150 patients.

Aided by the digital platform, the team also created a structured telemedicine tube weaning program that has dramatically reduced the number of patients with feeding tube dependence. Overall, this focus on not just safety but also quality of life at home has had a substantial impact on the mental health and well-being of these patients and their caregivers. In 2023, the IHM Program initiated a partnership with Stanley Manne Children’s Research Institute’s new Health@Home Digital Healthcare Research Initiative and with Sibel Health. The purpose of this partnership is to test new digital tools including advanced wearable sensors, AI-enabled data analytics, and an integrated mobile software and cloud platform, which will enable clinicians to gather and interpret in real-time the critical vital sign information needed to assess children with single ventricle physiology during their vulnerable period at home between staged surgeries. In addition to reducing the burden on caregivers, this more sophisticated monitoring could potentially enable early detection of life-threatening events. Watch a video about the IHM Program.

The Single Ventricle team also leads national efforts to optimize long-term follow-up for these patients. Dr. Allen serves on the leadership team for both the National Pediatric Cardiology Quality Improvement Collaborative and Fontan Outcomes Network, Both networks are focused on tracking and improving the functional health and quality of life outcomes of patients of all ages living with single ventricle physiology. Through these networks, members of the Lurie Single Ventricle Team are using their expertise to spearhead national quality improvement projects focused on growth and nutrition, physical activity and exercise, and liver health in this population. These collaborations with experts from around the country keeps the Single Ventricle team at the forefront of single ventricle care.