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

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.