Rosenthal Lisa-Maria, Danne Friederike, de Belsunce Sophie, Spath Lisa, Badur Chiara-Aiyleen, Photiadis Joachim, Berger Felix, Schmitt Katharina
Department of Congenital Heart Disease-Pediatric Cardiology, Deutsches Herzzentrum der Charité (DHZC), Berlin, Germany.
Berlin Institute of Health, Berlin, Germany.
Front Cardiovasc Med. 2025 Jan 6;11:1493698. doi: 10.3389/fcvm.2024.1493698. eCollection 2024.
Interstage home monitoring (IHM) programs are considered standard of care after Norwood palliation and have led to substantial improvements in clinical outcomes. This study aims to evaluate an application-based remote IHM program for infants with shunt- or duct-dependent pulmonary circulation. The primary goals were to discharge infants from the hospital while minimizing mortality, optimizing somatic growth, and enhancing caregivers' confidence in the clinical management at home.
Infants with shunt-dependent single ventricle physiology or complex biventricular physiology requiring staged palliation with aortopulmonary shunt were enrolled for the study. Caregivers completed a comprehensive education program on the clinical management of their child at home and were asked to remotely send monitoring data using an application. We analyzed demographic data and clinical outcomes; evaluated patient acceptance and adherence, as well as data entry patterns and metrics; and compared these to a historical control group monitored in a non-remote IHM program and with a propensity score-matched cohort adjusted for baseline characteristics.
We enrolled 30 infants in the remote IHM program between July 2021 and May 2024. The median duration of IHM was 110 days (IQR 75-140). A median of 353 (IQR 351-743) data entries were sent per patient during IHM of which 0.8% (IQR 0.3-1.9) were pathological. Readmissions (63%) and interventions (57%) were common, mainly due to cyanosis and infections. As all infants survived stage II palliation, interstage mortality could be reduced to 0% compared to 10.3% in the historical control group and was significantly lower compared to the propensity score-matched cohort with 14% ( = 0.032).
Application-based remote IHM for infants with duct- or shunt-dependent pulmonary perfusion is feasible, with high acceptance and adherence. The program significantly reduced interstage mortality compared to traditional monitoring methods. Remote patient monitoring (RPM) improves communication between caregivers and healthcare teams, allowing for early intervention and optimized patient outcomes. RPM has the potential to improve outcomes, enhance patient safety, and reduce family burden in this high-risk population.
分期家庭监测（IHM）项目被认为是诺伍德姑息治疗后的护理标准，并已使临床结局有了显著改善。本研究旨在评估一种基于应用程序的针对患有分流或导管依赖型肺循环的婴儿的远程IHM项目。主要目标是让婴儿出院，同时将死亡率降至最低，优化身体生长，并增强护理人员在家中进行临床管理的信心。
纳入患有分流依赖型单心室生理或需要进行主动脉肺动脉分流分期姑息治疗的复杂双心室生理的婴儿进行研究。护理人员完成了关于在家中对其孩子进行临床管理的综合教育项目，并被要求使用应用程序远程发送监测数据。我们分析了人口统计学数据和临床结局；评估了患者的接受度和依从性，以及数据录入模式和指标；并将这些与在非远程IHM项目中监测的历史对照组以及根据基线特征进行倾向评分匹配的队列进行了比较。
2021年7月至2024年5月期间，我们将30名婴儿纳入远程IHM项目。IHM的中位持续时间为110天（四分位间距75 - 140）。在IHM期间，每位患者平均发送353条（四分位间距351 - 743）数据记录，其中0.8%（四分位间距0.3 - 1.9）为病理性记录。再次入院（63%）和干预（57%）很常见，主要原因是发绀和感染。由于所有婴儿均存活至二期姑息治疗阶段，与历史对照组10.3%的二期死亡率相比，分期死亡率可降至0%，且与倾向评分匹配队列14%的死亡率相比显著更低（P = 0.032）。
针对患有导管或分流依赖型肺灌注的婴儿的基于应用程序的远程IHM是可行的，具有较高的接受度和依从性。与传统监测方法相比，该项目显著降低了分期死亡率。远程患者监测（RPM）改善了护理人员与医疗团队之间的沟通，实现了早期干预并优化了患者结局。RPM有潜力改善这一高危人群的结局、提高患者安全性并减轻家庭负担。
