Expanding the Reach of CHAMP for Single-Ventricle Patients

In mid-2019, the team began beta-testing the new mobile version with patients and families at Children’s Mercy Kansas City. The beta-testing was so successful that by September, all other CHAMP sites were encouraged to use the new version with their patients and families. The new version of the app can be used on any device, including smartphones and tablets. Today’s parents expect to be able to conduct daily activities on their phones, so that’s how they opt to use the CHAMP App: on a device they already know.

The team was determined to keep socioeconomic status from creating barriers to access, so it still offers the option of a tablet and cell service. If a family cannot afford a smartphone, they can still participate in the program.

With the new version of the app, the registration process has been significantly streamlined. Parents can download the CHAMP App from the app store on their phone or tablet. They are given a special PIN from their CHAMP site to complete the registration process.

The updates made to the CHAMP App were made possible by funding from the Claire Giannini Fund.

Expanding the Reach of Champ

Amy Ricketts, RN-C, CHAMP Multisite Project Manager, and Lori Erickson, PhD(c), CHAMP Clinical Program Manager, have led the effort to onboard additional CHAMP sites. Today, nine sites in addition to Children’s Mercy are using the CHAMP App, and nearly 80 babies in 22 states are being actively followed. Each center cares for its own babies and contributes data to the central registry at Children’s Mercy.

Centers currently participating in CHAMP include:

• Children’s Mercy Kansas City (Missouri)
• Seattle Children’s Hospital (Washington)
• Cincinnati Children’s Hospital (Ohio)
• West Virginia University Medicine Children’s (West Virginia)
• Primary Children’s Hospital (Utah)
• Arkansas Children’s Hospital (Arkansas)
• Cook Children’s Medical Center (Texas)
• Nationwide Children’s Hospital (Ohio)
• Children’s National Hospital (Washington, D.C.)
• Texas Children’s Hospital (Texas)

To date, 490 babies have been monitored via CHAMP. The program has capacity for more sites to participate, and five are already in the process of reviewing the legal and research requirements to become part of CHAMP.

Collaborative Research is Underway

As more organizations utilize the technology, the CHAMP registry continues to expand, giving teams access to more data for research. The registry tracks an average of 660 data points and 50 videos per child. As of the end of 2019, the CHAMP registry contained 336,000 data points.

All CHAMP sites have the opportunity to submit research proposals and collaborate on projects using registry data. The following projects are in process today:

1. Parental adherence to mobile health. What are the factors that correlate to parents entering or not entering data?
2. Unplanned readmissions. Can we develop predictive analytics, based on previously entered data, to help identify future unplanned admissions and subsequently avoid them?
3. Parental experience. How can we more effectively prepare parents to care for a baby at home during the high-risk interstage period? This qualitative study involves the evaluation of 120 hours of audio interviews with parents to learn how they cope with caring for a baby with a complex condition.
4. Video scoring tool. Can we better predict risks of readmission through video scoring? Developed by Doaa Aly, MBBCH, former Ward Family Heart Center Fellow, this tool assigns a score to each video uploaded by a parent. Dr. Aly won the Outstanding Investigator Award for this tool at the Cardiology 2019 Conference at the Children’s Hospital of Philadelphia.
5. Video scoring tool, phase 2. Can we validate the findings from the video scoring tool developed by Dr. Aly? Phase 1 was conducted solely at Children’s Mercy. Phase 2 is a multisite effort to validate the original findings at all other CHAMP sites.

CHAMP is Multilingual 

If a baby comes from a non-English-speaking family, its risk of death from complications during the interstage period may be higher. To address this concern, the team developed the app in additional languages:

• Spanish
• Arabic
• Chinese
• Filipino
• French
• German
• Korean
• Vietnamese

Patient Snapshot

• 11% Nonwhite
• 16% Hispanic/Latino
• 42% live > 100 miles from care center
• 56.2% have Medicaid insurance
• 5% use non-English CHAMP app
• 50% of patients have hypoplastic left heart syndrome (HLHS) with Norwood or hybrid palliations 

​Learn More About CHAMP

Hayley Hancock, MD, CHAMP Medical Director

hshancock@cmh.edu • (816) 302-3657

Amy Ricketts, RN-C, CHAMP Multisite Project Manager

amricketts@cmh.edu • (816) 302-3657

For consults, admissions or transport call: 1 (800) GO MERCY / 1 (800) 466 3729.