Overview
Some children who are born very early or have other congenital conditions may develop severe, long-term lung problems that make them need to use a breathing machine to live at home. There are no studies that identify the best ways to monitor a home breathing machine or adjust its settings. Increasingly, healthcare systems are using information collected at home to make more informed decisions about a patient's healthcare treatment, which is called "remote patient monitoring". This study will ask whether using remote patient monitoring can provide more complete information to a child's team of doctors, nurses, and respiratory therapists to help a child's healthcare team and family make more informed decisions about a child's home ventilator care. The investigators are hypothesizing it can safely decrease the level of breathing support children need while also avoiding emergency and hospital care and supporting their growth, development, and participation in daily life.
Description
This is a single-arm, non-randomized, open-label trial using remote patient monitoring for chronic management of invasive home mechanical ventilation in children. The investigators hypothesize that integration of longitudinal physiologic data and patient reported outcome measures into routine clinical care over 4 months can optimize home mechanical ventilation use by 1) reducing the level home mechanical ventilation level of support, 2) improving patient and family quality of life, specifically participation in daily activities and patient's lung symptoms, and 3) improving family-reported shared decision-making and child's access to ventilator care. The investigators will also evaluate its usability within family life and provider workflows and assess early implementation outcomes.
Eligibility
Family-Patient Inclusion criteria
- The patient uses invasive mechanical ventilation at home during any portion of the day at time of enrollment.
- The patient is 0 to 17 years old.
- The patient has at least one family caregiver (parent or other self-identified legal guardian) trained on home ventilator use who is willing to participate.
- The primary parental participant reads and speaks either English or Spanish.
Exclusion criteria
- The patient has progressive neuromuscular or other condition for which decreasing support during the day is not anticipated.
- The patient is already off of ventilation during the day while awake.
- The patient will turn 18 during participation.
- The patient has planned a transition of care to another institution or move during the planned study period after enrollment.
- The patient is in active hospice or similar end-of-life care at time of study enrollment.
- The patient is living in long-term institution, transitional facility, or not within a stable home setting during the study period.
