Table 3.

Summary of Recommendations

Recommendation	Strength	Quality of Evidence	Remarks
1. For children requiring chronic home invasive ventilation, we suggest a comprehensive Medical Home comanaged by the generalist and respiratory subspecialist.	Conditional	Very low	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.
2. For children requiring chronic invasive ventilation, we suggest the use of standardized discharge criteria to objectively assess readiness for care in the home.	Conditional	Very low	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.
3a. We recommend that an awake and attentive trained caregiver be in the home of a child requiring chronic invasive ventilation at all times.	Strong	Very low	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.
3b. For children requiring chronic invasive ventilation, we suggest that at least two specifically trained family caregivers are prepared to care for the child in the home.	Conditional	Very low	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.
3c. We suggest that ongoing education to acquire, reinforce, and augment skills required for patient care be provided to both the family and professional caregivers of children requiring chronic home invasive ventilation.	Conditional	Very low	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.
4a. For children requiring chronic home invasive ventilation, we suggest monitoring, especially when the child is asleep or unobserved, with a pulse oximeter rather than use of a cardiorespiratory monitor or sole use of the ventilator alarms.	Conditional	Very low	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.
4b. For children requiring chronic home invasive ventilation, we recommend regular maintenance of home ventilators and all associated equipment as outlined by the manufacturer.			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.
4c. We suggest the following pieces of equipment for use in the home when caring for a patient on home mechanical ventilation: the ventilator, a back-up ventilator, batteries, a self-inflating bag and mask, suctioning equipment (portable), heated humidifier, supplemental oxygen for emergency use, nebulizer, and a pulse oximeter (nonrecording).	Conditional	Very low	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.
4d. We suggest that a mechanical insufflation–exsufflation device be used to help maintain airway patency in patients requiring home mechanical ventilation with ineffective cough, including, but not limited to, those with neuromuscular disease with poor respiratory muscle strength.	Conditional	Very low	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.

Definition of abbreviation: DME = durable medical equipment.