Patient characteristics
| Diagnosis | Sex | Age at first admission | Function on first admission | No. of PICU admissions | Duration of follow up | Died during follow up | |
|---|---|---|---|---|---|---|---|
| Muscular dystrophy (32%) | |||||||
| 1 | Becker’s muscular dystrophy | M | 14 y 4 mth | Normal | 2 | 3 mth | No |
| 2 | Congenital myotonic dystrophy | F | 12 y 11 mth | Mild | 1 | 5 mth | No |
| 3 | Congenital muscular dystrophy unknown subtype | F | 1 y 9 mth | Severe | 3 | 1 y 4 mth | Died 3rd admission |
| 4 | Congenital muscular dystrophy | F | 1y 5 mth | Severe | 2 | 2 mth | Died on ward |
| 5 | Congenital muscular dystrophy | M | 2 y 5 mth | Moderate | 1 | Died 1st admission | Died 1st admission |
| 6 | Congenital muscular dystrophy | M | 7 y 11 mth | Moderate | 1 | 1 y | No |
| 7 | Duchenne’s muscular dystrophy | M | 15 y 8 mth | Severe | 1 | 1 y 11 mth | No |
| 8 | Duchenne’s muscular dystrophy | M | 13 y 11 mth | Severe | 2 | 3 y 9 mth | Died 2nd admission |
| 9 | Duchenne’s muscular dystrophy | M | 15 y | Severe | 4 | 3 y 5 mth | Died at home |
| Spinal muscular atrophy (18%) | |||||||
| 10 | Spinal muscular atrophy I | F | 4 mth | Severe | 1 | 3 mth | Died at home |
| 11 | Spinal muscular atrophy I | F | 8 mth | Severe | 1 | Died 1st admission | Died 1st admission |
| 12 | Spinal muscular atrophy II | M | 6 y 11 mth | Severe | 2 | 10 mth | No |
| 13 | Spinal muscular atrophy II | M | 3 y 3 mth | Moderate | 3 | 4 y 2 mth | No |
| 14 | Spinal muscular atrophy II | F | 2 y 9 mth | Severe | 5 | 2 y 10 mth | No |
| Myopathy (28%) | |||||||
| 15 | Idiopathic myopathy | M | 1 y 4 mth | Mild | 7 | 7 y 3 mth | No |
| 16 | Arthrogryposis/myopathy | M | 4 mth | Severe | 2 | 2 y 11 mth | No |
| 17 | Central core myopathy | M | 16 y 5 mth | Moderate | 4 | 5 y 6 mth | No |
| 18 | Central fibre type disproportion | M | 2 y 5 mth | Mild | 1 | 2 y 10 mth | No |
| 19 | Idiopathic myopathy | M | 3 mth | Severe | 9 | 1 y 3 mth | Died on ward |
| 20 | Non-progressive proximal myopathy | F | 11 y 10 mth | Mild | 2 | 2 y 11 mth | No |
| 21 | Pompe’s disease | M | 2 y | Mild | 1 | 3 mth | Died at home |
| 22 | Nemaline rod myopathy | M | 4 y 6 mth | Normal | 1 | 10 mth | No |
| Neuropathy (11%) | |||||||
| 23 | Charcot Marie tooth | F | 1 y 5 mth | Mild | 1 | 1 y 4 mth | No |
| 24 | Congenital demyelinating peripheral neuropathy | F | 10 y 10 mth | Moderate | 2 | 10 mth | No |
| 25 | Hereditary motor and sensory neuropathy type II | M | 16 y | Moderate | 1 | Died on day of discharge | Died at home |
| Other (11%) | |||||||
| 26 | ARTS syndrome | M | 3 y 2 mth | Moderate | 5 | 2 y 3 mth | No |
| 27 | ARTS syndrome | M | 1 y 9 mth | Mild | 3 | 2 y 3 mth | No |
| 28 | Friedreich’s ataxia | F | 15 y | Mild | 1 | 2 y | No |
| Total admissions | 69 | ||||||