Summary of information gathered
▶ Year of birth
▶ Sex
▶ Year ventilation initiated
▶ ▶Cause need for ventilation—single (main) cause
▶ Central nervous system—central hypoventilation syndrome (congenital, acquired) spinal injury, birth injury, postsurgical, postinfection, vascular malformation, non-accidental injury, other
▶ Muscoloskeletal—spinal muscular atrophy (i, ii, iii), congenital myopathy, Duchenne, other muscular dystrophy, kyphoscoliosis, Leigh disease, mucopolysaccharidosis, other
▶ Respiratory—chronic lung disease of prematurity, cystic fibrosis, upper airway obstruction, chronic lung disease, laryngotracheobronchomalacia, other
▶ Method of ventilatory support (all that apply)
▶ Tracheostomy
▶ Facial mask
▶ Negative pressure
▶ Phrenic nerve pacing
▶ Current location of child
▶ Acute hospital setting
▶ Rehabilitation, transitional care unit
▶ Intensive care
▶ Home
▶ If in hospital reasons for stay (all that apply)
▶ Medical issues
▶ Housing issues
▶ Equipment issues
▶ Recruitment issues
▶ Funding issues
▶ Other
▶ Time dependent on ventilatory assistance
▶ 24 h per day
▶ Asleep/nocturnal only,
▶ Nocturnal and intermittent daytime
▶ Not every day
▶ Healthcare package provision
▶ Yes
▶ No
▶ Don't know
▶ Education
▶ Not of nursery/school age
▶ Hospital school
▶ Nursery school
▶ Special needs nursery
▶ Mainstream school
▶ Special needs school
▶ Home tutor
▶ None
▶ Is the child wheelchair-dependent?