Recent Statistics
Short notes on Registry methods
Children are ascertained from multiple sources across Northern Ireland including paediatricians, neonatologists, orthopaedic surgeons, physiotherapists, parents and includes active searches of schools, hospital in- and outpatient records and death certificates.
Children are assessed ideally at age 5 years and once validated by the Registry Paediatrician are recorded on NICPR which includes a broad description of their impairments and some basic birth information.
Young children (under the age of 5 years) are likely to be unascertained as not all children will be diagnosed yet so data on young children must be interpreted with caution.
The following data relates to an assessment of the child's clinical presentation and abilities at age 5 years. NICPR is essentially a cross-sectional, epidemiological survey and we do not routinely follow up the children over time. However, we have designed separate research studies (described on this site) which are dedicated to finding out more about outcomes in the children, young people and increasingly, adults with cerebral palsy.
Some descriptive statistics
By June 2012 a total of 1,891 children with cerebral palsy (CP), born 1981-2012 (0-34 years) have been notified to the NICPR.
By age 5 years:
- 90% of children with CP were born in NI and still resident in NI
- 4% of children on NICPR move out by age 5; 6% have moved in
- 5% of children acquired their CP sometime after the neonatal period
- 50% of children with CP are born of normal birthweight; 20% are born weighing <1500g
- 9% of children are a twin or triplet
- 4% have an affected sibling
- 57% of children on NICPR are boys
On average 55 children are newly diagnosed with cerebral palsy each in Northern Ireland.
Livebirth prevalence of cerebral palsy
- 2.3 per 1,000 livebirths have CP (95% CIs 2.2-2.5)
This rate is similar in each of the Health & Social Care Trusts (HSCT) of birth per 1,000 livebirths for birth years 1981-07:
- Belfast Trust = 2.3
- Southeastern Trust = 2.3
- Northern Trust = 2.2
- Southern Trust = 2.2
- Western Trust = 2.3
The rate of cerebral palsy per 1,000 livebirths has remained relatively constant over time and the rate in NI is remarkably similar to other parts of the developed world.
Numbers of children living by Trust of residence
Please note that the numbers of children under the age of 5 years are likely to be underascertained as not all children with cerebral palsy will be diagnosed as yet.
|
Age by June 2012 |
Health & Social Care Trust of residence
|
ALL |
||||||
|
Belfast HSCT |
Southeastern HSCT |
Northern HSCT |
Southern HSCT |
Western HSCT |
Trust missing |
|||
|
|
under 5yrs |
41 |
30 |
42 |
31 |
29 |
2 |
175 |
|
5-8 yrs |
45 |
47 |
44 |
60 |
33 |
4 |
233 |
|
|
9-12yrs |
39 |
35 |
52 |
31 |
40 |
3 |
200 |
|
|
13-16yrs |
39 |
47 |
57 |
43 |
45 |
2 |
233 |
|
|
17-20 yrs |
57 |
40 |
43 |
43 |
35 |
0 |
218 |
|
|
21-34yrs |
117 |
102 |
127 |
104 |
133 |
5 |
588 |
|
|
Total |
338 |
301 |
365 |
312 |
315 |
16 |
1647 |
|
When these numbers are used to calculate rates per 1,000 of the age-specific population they are remarkably similar to the livebirth prevalence rate of 2.2 per 1,000.
Frequency of CP types for 5-19 year olds
- 45% have spastic hemiplegia
- 43% have bilateral spastic CP - of which 65% have diplegia
- 8% have dyskinetic (dystonic/athetoid) or have mixed dyskinetic-spastic CP
- 4% have ataxia or are unclassifiable by type (about 1%)
Frequency of GMFCS levels for 5-19 year olds
- 25% have Level I CP
- 41% have Level II CP
- 9% have Level III CP
- 9% have Level IV CP
- 17% have Level V CP
Mild forms of CP are more common - 75% of children and young people are able to walk (Levels I-III), mostly without the use of an aid or assistive device (walker, crutches or a stick) (Levels II).
While there is some small variation in the proportion children by Trust of residence and GMFCS levels these differences are not statistically significant (p>0.05).
Presence of associated impairments in 5-19 year olds
Impairments affecting eating, drinking, swallowing:
- 16% have problems with swallowing
- 16% have problems with excessive drooling
- 19% have problems with feeding (although we did not systematically collect this variable)
Learning:
- 40% have intellectual impairment in the IQ<70 range; of these 50% of have severe impairment
Communication:
- 40% have problems with communication; of these 50% use speech and 50% use speech and formal methods, formal methods only or have no communication.
Vision:
- 35% have visual impairment; of these 71% have normal/near normal vision, 12% have moderate impairment and 17% have severe to profound impairment.
Epilepsy:
- 23% have problems with seizures/epilepsy (in the 12 months prior to assessment).
Almost half the 5-19 year olds have at least one other significant co-impairment in conjunction with motor impairment.
