Equitable Implementation of Remote Patient Monitoring in Pediatric Invasive Home Mechanical Ventilation Using Wireless Devices - PROJECT SUMMARY/ABSTRACT Children who use invasive home mechanical ventilation (IHMV) are a growing population of pediatric patients with severe bronchopulmonary dysplasia, lung or airway malformations, or neuromuscular conditions affecting respiration who are reliant on positive pressure ventilation delivered through a tracheostomy for long- term respiration. Despite IHMV providing a life-sustaining bridge for these children to live at home, IHMV includes risk of death from ventilator malfunction, high family caregiver burden, and high home healthcare costs estimated at ~$20,000/month/child. Therefore, to optimize IHMV, clinicians routinely assess whether to titrate up or down a patient’s level of positive pressure support and/or hours/day on the home ventilator to maintain respiratory stability while also balancing IHMV health risks, caregiving breaks, and long-term costs. To date, no evidence-based approaches exist for pediatric chronic IHMV management, resulting in high- clinical variability and disparities for Hispanic/Latinx patients. Currently, in-person cross-sectional assessments are used to optimize ventilator settings but provide only a limited picture of a child at home. As a novel alternative, we co-designed a remote patient monitoring dashboard that links parents’ hand-collected vital sign data and parent-reported symptoms to the children’s electronic health record, that can be trended by the clinical team to facilitate more informed, remote chronic ventilator changes. However, key limitations to this current approach include: 1) the time and cognitive burden of hand-collected data by parents and 2) lower usability with hand-collected data entry in parents with a language other than English and/or lower technology literacy, which raises concerns about equitable implementation of this new dashboard across diverse families. To address our prior limitations, this R03 will: 1) validate the use of soft, flexible, skin-attached biosensors and a portable capnograph to wirelessly collect continuous physiologic data as an alternative to hand-collected vital sign data collection by parents (Aim 1) and 2) apply the Health Equity Implementation Framework using contextual qualitative interviews to identify determinants (barriers and facilitators) of remote monitoring use and implementation strategies that could increase use of this intervention in populations at risk of lower adoption (Aim 2). Together these Aims will provide essential data for more effective and equitable implementation of our remote patient monitoring intervention in a larger multisite clinical trial, which will be a paradigm shift in chronic home ventilator management. This work is significant in developing critically needed evidence-based strategies that provide effective and family-centered pediatric care for children with medical technology dependence, in a manner that will ensure no children and their families will be left behind.
