Table 2

Demographic and disease characteristics of the 136 children with medical complexity at the time of their clinic visit

Gendern=136
 Male86 (63%)
 Female50 (37%)
Age (years)
 0–434 (25%)
 5–933 (24%)
 10–1439 (29%)
 15–1830 (22%)
Primary diagnosis
 Central nervous system (n=38%–28%)
  Congenital central hypoventilation syndrome9 (7%)
  Spinal injury6 (4%)
  Birth injury/cerebral palsy5 (4%)
  Acquired central hypoventilation syndrome3 (2%)
  Other central causes15 (11%)
 Musculoskeletal (n=82%–61%)
  Duchenne’s muscular dystrophy19 (14%)
  Other dystrophy18 (13%)
  Spinal muscular atrophy13 (10%)
  Congenital myopathy8 (6%)
  Other myopathy8 (6%)
  Mucopolysaccharidoses3 (2%)
  Other musculoskeletal13 (10%)
 Respiratory (n=10%–7%)
  Upper airway obstruction4 (3%)
  Chronic lung disease3 (2%)
  Airway malacia1 (1%)
  Other respiratory2 (1%)
 Unclassified (n=6%–4%)
Days in hospital in the past 12 months
 0–181 (59%)
 2–1034 (26%)
 >1021 (15%)
Paid homecare support* (hours/week)
 073 (54%)
 1–1914 (10%)
 20–4927 (20%)
 >5022 (16%)
Number of technologies
 0–137 (27%)
 2–457 (42%)
 ≥542 (31%)
Technology
 Oxygen saturation monitor79 (58%)
 Wheelchair79 (58%)
 BiPAP (nocturnal)52 (38.%)
 Cough assist51 (38%)
 Suction49 (36%)
 Gastrostomy tube37 (27%)
 Supplemental oxygen (nocturnal/naps)19 (14%)
 Trach/Vent (nocturnal/naps)18 (13%)
 Gastrojejunostomy tube17 (13%)
 Trach/Vent (24 hours/day)9 (7%)
 Trach only6 (4%)
 Supplemental oxygen (24 hours)3 (2%)
 Ventriculoperitoneal shunt3 (2%)
 CPAP2 (1%)
 Lifting device2 (1%)
 Sip ventilation1 (1%)
 Port-a-Cath1 (1%)
  • *Homecare supports included the number of nursing and personal support worker hours per week.

  • BiPAP, Bilevel positive airway pressure; CPAP, continuous positive airway pressure; Trach/Vent, tracheostomy and ventilation.