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Patterns of care for single ventricle infants in a home monitoring programme

Published online by Cambridge University Press:  18 September 2026

Margaret L. Schroeder*
Affiliation:
Cardiovascular Care Unit, Boston Children’s Hospital, USA
Elizabeth Casto
Affiliation:
Department of Cardiology, Boston Children’s Hospital, USA
Shannon Engstrand
Affiliation:
Cardiovascular, Critical Care & Perioperative Patient Services, Boston Children’s Hospital, USA
Erin Keenan
Affiliation:
GI/Nutrition, Boston Children’s Hospital, USA
Michelle Hurtig
Affiliation:
Inpatient/ICP, Procedural Programs, Boston Children’s Hospital, USA
Rebecca Noymer Matulsky
Affiliation:
Cardiovascular, Critical Care & Perioperative Patient Services, Boston Children’s Hospital, USA
Jean Anne Connor
Affiliation:
Cardiovascular, Critical Care & Perioperative Patient Services, Boston Children’s Hospital, USA
*
Corresponding author: Margaret L. Schroeder; Email: margaret.schroeder@cardio.chboston.org
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Abstract

Introduction:

The advanced practice registered nurse-led home monitoring programme has served as an early warning system for the fragile population of single ventricle infants discharged home between their staged interventions. However, patterns of care by the home monitoring team have not been studied.

Methods:

This retrospective, single-centre review of patients from 2010 to 2020 1) described patient characteristics and significant interstage events and 2) identified themes and patterns of care utilised by the advanced practice registered nurse and registered dietitian through review of communication in the electronic medical record.

Results:

The inclusion criteria were met by 334 patients. Of these, 55% underwent a Stage I Norwood as their initial intervention. Ten percent had a patent ductus arteriosus stent in the cardiac catheterisation lab, 79% of which occurred 2019 to 2020. Interstage mortality was 4.5%. Sixty-three percent of patients had at least one unplanned admission, while 26% of patients had an early cardiac catheterisation. Three themes were identified in provider-patient encounters: Clinical Management, Care Escalation, and Care Coordination, with two levels of care, standard and advanced. Most encounters (83%) were designated standard level of care. Encounters that required use of an interpreter (n = 204) took twice as long (p < .001).

Conclusions:

The home monitoring programme supports fragile infants during the interstage period at home. Using the newly developed Patterns of Care framework, most encounters were assessed to be “standard level of care.” Encounters utilising an interpreter due to caregiver’s limited English proficiency required significantly more time.

Information

Type
Original Article
Copyright
© The Author(s), 2026. Published by Cambridge University Press
Figure 0

Figure 1. Figure 1 long description.Patterns of care during the interstage period.

Figure 1

Table 1. Index admission and interstage events (n = 334 patients)Table 1 long description.

Figure 2

Table 2. Encounters using an interpreterTable 2 long description.