Codesign of remote data collection for chronic management of pediatric home mechanical ventilation

Abstract

IntroductionOutpatient monitoring of children using invasive home mechanical ventilation (IHMV) is recommended, but access to care can be difficult. This study tested if remote (home‐based) data collection was feasible and acceptable in chronic IHMV management.MethodsA codesign study was conducted with an IHMV program, home nurses, and English‐ and Spanish‐speaking parent‐guardians of children using IHMV (0–17 years; n = 19). After prototyping, parents used a remote patient monitoring (RPM) bundle to collect patient heart rate, respiratory rate (RR), oxygen saturation, end‐tidal carbon dioxide (EtCO2), and ventilator pressure/volume over 8 weeks. User feedback was analyzed using qualitative methods and the System Usability Scale (SUS). Expected marginal mean differences within patient measures when awake, asleep, or after a break were calculated using mixed effects models.ResultsPatients were a median 2.9 years old and 11 (58%) took breaks off the ventilator. RPM data were entered on a mean of 83.7% (SD ± 29.1%) weeks. SUS scores were 84.8 (SD ± 10.5) for nurses and 91.8 (SD ± 10.1) for parents. Over 90% of parents agreed/strongly agreed that RPM data collection was feasible and relevant to their child's care. Within‐patient comparisons revealed that EtCO2 (break‐vs‐asleep 2.55 mmHg, d = 0.79 [0.42–1.15], p < .001; awake‐vs‐break 1.48, d = −0.49 [0.13–0.84], p = .02) and RR (break‐vs‐asleep 16.14, d = 2.12 [1.71–2.53], p < .001; awake‐vs‐break 3.44, d = 0.45 [0.10–0.04], p = .03) were significantly higher during ventilator breaks.ConclusionsRPM data collection in children with IHMV was feasible, acceptable, and captured clinically meaningful vital sign changes during ventilator breaks, supporting the clinical utility of RPM in IHMV management.