Detailed characteristics of the children
| N=77 | |
| N (%) | |
| Med (IQR) | |
| 1. Health status | |
| Neurodevelopment status (months)* | |
| Language | 5 (2–9) |
| Posture-motor ability | 3 (2–10) |
| Coordination | 6 (2–6) |
| Sociability | 6 (2–9) |
| Neurological handicaps | |
| Severe dystonia | 5 (7.5) |
| Global hypotonia | 38 (52.1) |
| Extrapyramidal syndrome | 13 (19.1) |
| Ataxia | 5 (7.5) |
| Sensorial disorders | |
| Visual impairment | 22 (28.9) |
| Hearing impairment | 7 (9.2) |
| Behavioural disorders† | 20 (27.0) |
| Sleep disorders | |
| Night wake up | 20 (26.7) |
| Difficulties falling asleep | 12 (16.2) |
| Short sleep | 3 (4.2) |
| Inversion | 4 (5.4) |
| Epilepsia | |
| Presence of epilepsia | 40 (52.6) |
| At least one crisis per day | 27 (67.5) |
| Previous status epilepticus | 19 (24.7) |
| Orthopaedic | |
| Scoliosis | 31 (41.3) |
| Limb deformation | 25 (34.2) |
| Hip luxation | 11 (14.3) |
| Arthrodesis, other surgery | 12 (15.8) |
| Pulmonary | |
| Aspiration syndrome | 18 (23.4) |
| Recurrent pulmonary infections | 8 (10.4) |
| Digestive | |
| Drooling | 25 (32.5) |
| Faecal impaction | 24 (31.2) |
| Gastro-oesophageal reflux | 31 (40.3) |
| Urinary | |
| Recurrent urinary tract infections | 1 |
| Urinal retention | 2 |
| Cutaneous | |
| Bedsores | 1 |
| 2.Treatments and rehabilitation | |
| Medications | |
| More than 3 | 35 (45.4) |
| Total number | 3 (2–7) |
| Laxatives | 42 (54.5) |
| Anticonvulsants | 48 (62.3) |
| Psychotropics | 7 (9.1) |
| Osteoporosis prevention | 15 (19.5) |
| Antispastics | 12 (15.6) |
| Antidystonics | 8 (10.4) |
| Devices‡ | |
| No device | 54 (70.1) |
| One device | 18 (23.4) |
| Two devices | 4 (5.2) |
| Four devices | 1 |
| ≥3 hours/day in a sitting device | 63 (81.8) |
| Verticalisation device use | 15 (19.5) |
| Air mattress | 11 (14.3) |
| 3.Health pathway | |
| Previous emergency and/or ICU admission | 18 (23.4) |
| Perception of referent physician | |
| Medical care inadequacy | 7 (9.1) |
| Educational care inadequacy | 12 (15.6) |
| Request for an admission in institution§ | 21 (27.3) |
| Life project structuration | 54 (70.1) |
| Palliative condition | 3 (3.9) |
Med (IQR): median (IQR).
*Neurodevelopmental status levels range from 0 to 24 months.
†Behavioural disorders including intermittent screaming and/or agitation and/or stereotypies and/or intermittent crying and/or self-aggressivity and/or hetero-aggressivity.
‡Including gastrostomy, non-invasive mechanical ventilation, cerebrospinal fluid derivation, tracheotomia, permanent urinary probe, nasogastric tube, invasive mechanical ventilation and central venous catheter.
§Registered on a waiting list and/or official request made by the French Department for Persons with Disabilities.
ICU, intensive care unit.