TABLE 1

Study Population: Child Characteristics

Child CharacteristicsN%
Sex
 Male10852
 Female10048
Age at enrollment, y
 Birth to <12713
 1–<55526
 5–<116129
 11–<184019
 18+2512
Clinical characteristics
 No. body systems-median (range)2084 (3–6)
 Neurodevelopmental disabilities13163
  Cerebral palsy9847
  Epilepsy, seizures, or convulsions8842
  Developmental delay147
  Other neurologic condition105
 Technology dependence16278
  Tracheostomy3215
  Respiratory support devicea199
  Feeding tube14369
  Other technologyb4924
 Caregiver assistance with ADLs19493
Gross motor function classificationc
 Level I–III2010
 Level IV3617
 Level V9345
 Not scored5928
  • ADL, activity of daily living.

  • a Respiratory support device: ventilator, continuous positive airway pressure, or bilevel positive airway pressure.

  • b Other technology: central line, urinary catheter, intrathecal baclofen pump, vagal nerve stimulator, or other.

  • c Adapted from Palisano R, Rosenbaum P, Walter S, Russell D, Wood E, Galuppi B. Development and reliability of a system to classify gross motor function in children with cerebral palsy. Dev Med Child Neurol. 1997;39(4):214–223.