Abstract

Infants born with single ventricle physiology that require an aorto-pulmonary shunt are at high risk for sudden cardiac death, particularly during the interstage period between the first-stage palliation and the second-stage palliation. Home monitoring programs have decreased interstage mortality in the hypoplastic left heart syndrome population prompting programs to expand the home monitoring program to other high-risk populations. At our mid-sized program, we implemented the Locus Health home monitoring platform first in the hypoplastic left heart syndrome population, then expanding to the single ventricle shunt population. Interstage mortality for the hypoplastic left heart syndrome population after initiation of the home monitoring program went from 18% prior to 2009 to 7% as of the end of 2020 (n = 99), with 2.8% mortality from 2013 to 2020 and 0% mortality since initiation of the Locus program in 2017. Caregiver surveys done prior to discharge and then 3 weeks later were used to document caregiver experience using the digital home monitoring program. Caregivers reported overall positive experience with the digital application, with 91.8% stating that they felt confident taking care of their baby at home. Transitioning the home monitoring program from a traditional binder to an iPad with the Locus Health application allowed us to expand the program, utilize the electronic medical record, bill for the service, and demonstrate positive experiences for caregivers. Overall engagement and adherence with the program by caregivers were 50.94 and 45.45%, with a total of 112 patient episodes. Reimbursement from private insurance providers was 22% of the billed amount for 2020.

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