Initial Experience with Application-Based Remote In-Home Monitoring for Infants with Single Ventricle Heart Disease after Norwood Palliation—Feasibility, Acceptance, and Barriers

Background: Infants born with single ventricle heart defects (SVHD) have been experiencing substantial improvements from compassionate care to long-term survival. Nowadays interstage home-monitoring (IHM) programs are considered standard of care and have led to substantial improvements. To date only few studies have evaluated the benefit of asynchronous transfer of monitoring data with tablet- or application-based remote IHM programs. We established an application-based remote patient interstage monitoring for infants with single ventricle heart disease after Norwood palliation and evaluate our initial experience regarding feasibility, acceptance and barriers.

Methods: In a single-center prospective clinical trial all infants with shunt-dependent single ventricle physiology or with complex biventricular physiology requiring staged palliation with aortopulmonary shunt were included in the IHM program. Caregivers were asked to daily enter and send monitoring data via an application on their mobile phone. Acceptance of technology, patient adherence and clinical outcomes were evaluated.

Results: We included 20 patients between July 2021 and August 2023. The median duration of IHM was 107 days (IQR 61–146) with a median of 487 data entries (IQR 183–647) sent per patient. Peripheral oxygen saturation (SpO2) and heart rate significantly decreased across the observation period. Body weight significantly increased from birth to start of IHM and from start to end of IHM whereas Weight for age Z score (WAZ) and percentile significantly decreased from birth to start of IHM and were still significantly decreased at the end of IHM compared with birth. WAZ increased from a median of −1.45 (IQR −2 to −1.1) at the start of IHM to a median of −1,25 (IQR −2 to −0.5) at the end of IHM and percentile from a median of 15 (IQR 5–25) to 18 (IQR 7–39). There were 20 unplanned hospital admissions with 13 unplanned interventions in the study cohort. 13 (65%) of the patients required at least on unplanned hospital admission, 10 (50%) of the patients required at least on unplanned intervention. All infants survived to stage II palliation or biventricular correction, interstage mortality was therefore 0%.

Conclusion: Application-based remote patient monitoring is emerging as a valuable tool for interstage monitoring in children with single ventricle heart disease. RPM enables health care providers to closely monitor key physiological parameters and holds significant potential to improve outcomes, enhance patient safety, and reduce the burden on families.

Publication History

Article published online:
13 February 2024