Table 2.

Risks and burdens of long-term ventilation for the child as described by directors of pediatric home ventilation programs

Modality	Risk/Burden	No. Who Mentioned (Out of 15)
Invasive and noninvasive	Positive-pressure ventilation may be needed for the remainder of the child’s life*	14
	Disconnection from interface/ventilator	12
	Ventilator malfunction	10
	Loss of privacy†	7
	Stigmatization and prejudice†	6
	Community resources for adults on LTV may be considerably less than for children‡	3
Invasive	Airway obstruction (e.g., mucus plugging)	14
	Tracheostomy decannulation	14
	Even after tracheotomy, hospitalization may be protracted	10
	Tracheal bleeding	8
	Surgical risks of tracheotomy	7
	Tracheal granulomas	6
	Infection (e.g., tracheitis and pneumonia)	5
	Impaired speech development in infants and toddlers	3
	Limitations in community/school participation†	2
	Periodic airway bronchoscopy to evaluate for granulomas and tracheostomy sizing‡	1
Noninvasive	May not meet their ventilatory needs long term*	14
	Potentially less safe method to ventilate in some patients with airway compromise	7
	Improper mask fit	6
	Pressure-related facial skin/bone issues (e.g., irritation, breakdown, craniofacial deformity/midfacial hypoplasia)	6
	Inability to tolerate, especially toddlers	3
	Aerophagia and abdominal distention resulting in discomfort and increased risk of aspiration	2
	Nonadherence, consequences of which can be difficult to appreciate†	2

Definition of abbreviation: LTV = long-term ventilation.

^*Depending on child’s diagnosis/prognosis.

^†Especially relevant for older children and young adults.

^‡Depending on hospital or community.