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Published on: January 27, 2023
Harnessing Teams and Technology to Improve Outcomes in Infants With Single Ventricle
Girish Shirali1, Lori Erickson2, Jonathan Apperson2
1From the Ward Family Heart Center, Children's Mercy Kansas City, MO (G.S., L.E., J.A., D.T., M.B., L.R., R.S.); Health Services and Outcomes Research, Children's Mercy Kansas City, MO (K.G., D.W., K.R., A.B.-E.); and Saint Luke's Mid America Heart Institute, Kansas City, MO (J.S.). gsshirali@cmh.edu.
Insights
A new tablet-based monitoring system for infants with single ventricle congenital heart disease significantly reduced interstage mortality. This innovative remote patient monitoring solution offers secure data transfer and instant alerts for improved infant cardiac care.
Area of Science:
- Pediatric Cardiology
- Health Informatics
- Medical Technology
Background:
- Infants with single ventricle (SV) heart defects require complex, staged surgical palliation.
- A critical challenge is managing infants between surgical stages, with high risks of mortality and morbidity.
- Current home monitoring methods are often manual, burdensome for families, and lack timely data feedback.
Purpose of the Study:
- To evaluate a novel tablet PC-based remote monitoring system for infants with SV awaiting stage II cardiac surgery.
- To assess the system's impact on interstage mortality and morbidity.
- To gather feedback from caregivers and healthcare providers on system usability and effectiveness.
Main Methods:
- Development of a secure, cloud-based tablet PC platform for real-time data transmission (weight, oxygen saturation) and alerts.
- Integration with electronic medical records and adherence to FDA mobile health regulations.
- Monitoring of 30 infants with SV from March 2014 onwards, collecting data on outcomes and user experience.
Main Results:
- Zero interstage deaths were recorded among the 30 monitored infants.
- Healthcare providers reported unanimously positive experiences with the system.
- A majority of families (23/30) preferred the tablet PC interface over traditional notebooks.
Conclusions:
- The tablet PC-based remote monitoring system is a safe and effective tool for managing infants with single ventricle post-stage I surgery.
- This technology has the potential to significantly reduce interstage mortality and improve care coordination.
- The system's usability and positive reception by families and providers suggest its value in pediatric cardiac care.
Abstract:
Infants with single ventricle require staged cardiac surgery, with stage I typically performed shortly after birth, stage II at 4 to 6 months of age, and stage III at 3 to 5 years of age. There is a high risk of interstage mortality and morbidity after infants are discharged from the hospital between stages I and II. Traditional home monitoring requires caregivers to record measurements of weight and oxygen saturation into a binder and requires families to assume a surveillance role. We have developed a tablet PC-based solution that provides secure and nearly instantaneous transfer of patient information to a cloud-based server, with the capacity for instant alerts to be sent to the caregiver team. The cloud-based IT infrastructure lends itself well to being able to be scaled to multiple sites while maintaining strict control over the privacy of each site. All transmitted data are transferred to the electronic medical record daily. The system conforms to recently released Food and Drug Administration regulation that pertains to mobile health technologies and devices. Since this platform was developed in March 2014, 30 patients have been monitored. There have been no interstage deaths. The experience of care providers has been unanimously positive. The addition of video has added to the use of the monitoring program. Of 30 families, 23 expressed a preference for the tablet PC over the notebook, 3 had no preference, and 4 preferred the notebook to the tablet PC.
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