Long‐term ventilatory support for children: there's no place like home

Abstract

See related https://onlinelibrary.wiley.com/doi/full/10.1111/resp.14121

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

“…Our results also provided key information on core functionality that would be needed when designing an RPM approach for this population, including: (1) supporting multiple caregivers and nurse logins, (2) reminders to users such as texts or other phone notifications, and (3) individualized data programming based on ventilation settings, schedules, and child activity. This latter finding is consistent with previous literature noting that the care needs of children using IHMV are highly variable between patients and for a given patient during the course of their IHMV use 6 . We also note that while prior work in pediatric monitoring of noninvasive ventilation differs from IHMV because it is often heavily focused on patient adherence, we wish to highlight similarities in how our preliminary findings in IHMV mirrors the published literature demonstrating that home monitoring of noninvasive ventilation demonstrates benefits to patient care by guiding adjustments in therapy and reducing hospital or in‐clinic visits 7,14,15 …”

“…given patient during the course of their IHMV use. 6 We also note that while prior work in pediatric monitoring of noninvasive ventilation differs from IHMV because it is often heavily focused on patient adherence, we wish to highlight similarities in how our preliminary findings in IHMV mirrors the published literature demonstrating that home monitoring of noninvasive ventilation demonstrates benefits to patient care by guiding adjustments in therapy and reducing hospital or in-clinic visits. 7,14,15 We note that while we hypothesized that there might be value in collecting vital sign information while children were both asleep and awake, for some children, the sleeping data collection was bothersome without adding statistically different information.…”

“…4,5 The level of ventilatory support a child on IHMV receives may change as a child grows or as their underlying conditions improve or worsen. 6,7 However, access to IHMV outpatient care to adjust ventilator support can be disrupted by transportation limitations, clinic space availability, and other structural barriers to care. [8][9][10] With the widespread adoption of telemedicine during the COVID-19 pandemic, increased opportunities were developed to provide healthcare for children at home.…”

“…When children with IHMV are discharged home, they require longitudinal monitoring to optimize growth and development while minimizing morbidity 4,5 . The level of ventilatory support a child on IHMV receives may change as a child grows or as their underlying conditions improve or worsen 6,7 . However, access to IHMV outpatient care to adjust ventilator support can be disrupted by transportation limitations, clinic space availability, and other structural barriers to care 8–10 …”