Abstract
Background: Asynchronous remote patient monitoring (RPM) is increasingly common in healthcare models for infants with congenital heart disease (CHD). Using a downloadable mobile application with a software platform like CHAMP App ® allows parents to proactively engage in data entry, providing pediatric healthcare teams (HCT) timely information without relying solely on parent messaging or calls. Research Question: How does the use of RPM impact family communication and clinical decision-making experiences for HCTs? Goals: To identify the HCT’s experience through a secondary review of the CHAMP Cardiac Repository, using parent-entered interstage data from home for infants with CHD. Methods: This retrospective multi-institution cohort (Table 1) spanned from 5/2019-8/2023, collecting HCTs feedback via Likert responses (Table 2) about experiences with infant monitoring endpoint, which were analyzed in SPSS. Results: Response rates of 75.8% (493/650) were achieved across 10 pediatric cardiac care centers. HCTs reported improved communication (4.5 + .77) and clinical decision-making with video reviews (4.47 + .79). Parents' data engagement averaged 268 + 195.3 total points (oxygen saturation, weights, and/or videos) per infant. Higher engagement correlated with better HCT communication (p <.001) and decision-making (p <.0001), both with small effect sizes. Improved clinical decision-making was noted in families who used study-provided iPads for video recordings (mean score 4.63 ± 0.84) compared to those using personal devices (mean score 4.42 ± 0.734, p = .03), with 69.2% using personal devices. Conclusions: In this modern cohort, families engaged well with data entry through a remote monitoring platform, and HCTs reported significant improvements in communication with families for their child’s data from home and clinical decision-making after reviewing videos. Future research should explore barriers to mobile data engagement and assess HCT preferences for video review.
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