Pediatric Chronic Home Invasive Ventilation
Summary of Recommendations
- The Medical Home model can provide family-centered care for children with special health care needs, including children on home invasive ventilation. This recommendation places a high value on the possible medical and social benefits to this intervention and places low value on the potential risks, which may include increased provider time.
- The Workgroup believed that comprehensive standardized discharge criteria would encourage a complete review of each patient’s medical stability and home situation to facilitate safe discharge. The goal is to identify and eliminate important barriers to care in the home before discharge and consider alternate care arrangements if obstacles cannot be eliminated. Weight given to each component of the proposed criteria would vary from patient to patient. The recommendation places high value on the potential benefits of considering all facets of a child’s care in the home before discharge and low value on the increased provider time and resource use that may be required.
- Despite very low quality evidence supporting this recommendation, the Workgroup was confident that in this case the desirable consequences would clearly outweigh the undesirable consequences of following this recommendation. Lack of an awake and attentive trained caregiver would place the child in a life-threatening situation. Training of caregivers is irrelevant if one is not available to respond to an emergent situation. For most families this requires the support of a professional appropriately trained in-home caregiver to allow family caregivers time to sleep, work, and maintain a life balance. This recommendation places a high value on the safety of the patient, and low value is placed on avoiding the increased use of resources and the possible disruption to families who may need to accommodate a professional caregiver in their home.
- The experience of the Workgroup and available data indicate that a lone trained family caregiver would rarely be capable of shouldering the entire burden of care for a child using invasive ventilation in the home. This recommendation places high value on the safety of the patient and quality of life of caregivers and low value on increased resource use for training more than one caregiver.
- The Workgroup believed, based on clinical experience, that practitioners and professional personnel agencies must strive to provide ongoing education to family and professional caregivers. Continuing education would help reinforce learned skills and allow training on new technologies and protocols. This recommendation places a high value on safety and on the potential clinical benefits to the patient and a low value on increased cost and resource use.
- Small indirect studies and the experience of the Workgroup suggest that ventilator alarms may not always function correctly. Furthermore, hypoxemia is most likely to be the first indicator of a serious issue in a child with respiratory disease. The workgroup believes pulse oximetry is the preferred method for monitoring patients on home mechanical ventilation. This recommendation places high value on the safety of the child and low value on possible increase in caregiver burden secondary to false alarms.
- Although states have differing regulatory requirements for DME providers, and the data supporting the value of equipment maintenance are lacking, the Workgroup believed strongly that maintenance of all home equipment by appropriately trained DME employees as recommended by the manufacturer should be standard of care. Care should be taken to assure that the actual ventilator settings as seen on the control panel match the prescribed settings. Twenty-four hour a day service and phone support must be available. This recommendation places a high value on the likely clinical benefits of properly functioning equipment programmed with the correct patient settings and low value on increased resource use.
- On the basis of experience, the Workgroup believed the presence of specific pieces of equipment could prevent the development of life-threatening situations and/or reduce their severity. This recommendation places high value on the potential to avoid emergent situations due to the presence of important reserve and emergency equipment and low value on increased resource use and increased equipment costs.
- Equipment to facilitate airway clearance is essential in reducing the risk of acute airway obstruction in patients with ineffective cough. This recommendation places high value on the potential to avoid emergent airway plugging and low value on increased costs and resource use.
Pediatric Chronic Home Invasive Ventilation
April 1, 2016
Last Updated Month/Year
November 21, 2022
Supplemental Implementation Tools
External Publication Status
Country of Publication
Female, Male, Adolescent, Child, Infant
Health Care Settings
Home health, Hospital, Outpatient
Respiratory therapist, physician assistant, physician, nurse practitioner, nurse
respiratory insufficiency, mechanical ventilators