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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 basic statistics on cerebral palsy in Northern Ireland

By November 2013 a total of 1,964 individuals born 1981-2013 with possible or actual cerebral palsy (CP) were notified to NICPR and 92% have clinical data. A further 2% have been lost to follow up.

By age 5 years:

  • 90% of individuals with CP are born in NI and stay in NI
  • 4% born in NI move out of the area
  • 6% have moved in from another area outside of NI
  • 5% have acquired CP occurring sometime in the post-neonatal period (28 days after birth onwards).
  • 52% of cases are born of normal birth-weight; 20% are born weighing 1500g or less
  • 9% are multiple births (twins, triplets…)
  • 4% have a sibling with CP
  • 57% of individuals with CP are boys

On average 55 children are newly diagnosed with cerbral palsy in Northern Ireland each year.

Livebirth prevalence of cerebral palsy for birth years 1981-2010

  • 2.3 per 1,000 livebirths have CP (95% CIs 2.3 - 2.5)

This rate is similar across the Health & Social Care Trusts of birth:

  • 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

This section is based upon children who are alive and resident in NI and includes those with acquired cerebral palsy as they have service needs.

 Please note that the number of children under the age of 5 years is likely to be higher as not all children with CP will be diagnosed as yet.

 Table 1: Numbers of children with CP grouped by age and Trust of residence, November 2013 (excludes deaths & children known to have moved out).

 

Health & Social Care Trust of residence

 

Age by November 2013

Belfast HSCT

Southeastern HSCT

Northern HSCT

Southern HSCT

Western HSCT

Trust

missing

All

n (rate)

 

0-4 years

43

35

44

28

30

5

185

 

5-9 years

46

64

56

67

41

10

284

 

10-14 years

51

52

64

37

56

3

263

 

15-19 years

54

52

69

58

46

5

284

 

20-24 years

66

59

67

58

62

3

315

 

25-29 years

55

40

61

49

63

0

268

 

30-34 years

27

48

46

37

59

1

218

Total

342

350

407

334

357

27

1,817

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% unilateral spastic CP (i.e. hemiplegia)
  • 43% bilateral spastic CP (i.e. quadriplegia) of which 65% are leg-dominated or diplegic
  • 8% dyskinetic (dystonic/athetoid) or have mixed dyskinetic-spastic CP
  • 4% have ataxia or are unclassifiable (about 1%)

 

Clinical characteristics of children and young adults with CP living in NI – function and other associated impairments.

Frequency of GMFCS levels for 5-19 year olds

The Gross Motor Function Classification System (GMFCS) is classification system with 5 levels that describe general mobility and function of children and young people with CP. It particularly focuses on sitting, walking, and wheeled mobility.

 The distribution of GMFCS among children living in NI is:

  • 25% Level I
  • 41% Level II
  • 9% Level III
  • 9% Level IV
  • 17% Level V 

Mild forms of CP are more common (GMFCS Levels I to III). Up to 75% of children and young people are able to walk, most of them without the use of an aid or assistive device (e.g. walker, crutches or a stick; GMFCS Level 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).

Arm function for 5 - 19 year olds


The distribution by arm function in children and young people with CP living in NI is:

  • 35% have no problems with arm function
  • 34% have some difficulty using their two hands together but can get dress
  • 15% are physically incapable of putting on a vest or t-shirt but can feed themselves with one or other hand
  • 16% are physically incapable of putting on a vest or t-shirt or feed themselves 

Presence of associated impairments in 5-19 year olds

 Almost half of the children and young adults between the ages of 5 and 19 have at least one other significant co-impairment in conjunction with motor impairment. 

Impairments affecting eating, drinking, swallowing:

  • 16%have problems with swallowing (affecting eating and drinking)
  • 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).

Contact Information

Northern Ireland Cerebral Palsy Register
Room 1.36
Mulhouse Building
Queen’s University Belfast
Grosvenor Road
Belfast BT12 6BJ

Telephone: 028 9063 5045
Email:  j.parkes@qub.ac.uk

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