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Editor—The recent collaborative publication on the epidemiology of cerebral palsy, incorporating data from three cerebral palsy registers, categorises levels of functional disability to reflect difficulties with ambulation, manual dexterity, and learning.1
We agree that “...severity of disability needs to be recorded...” to facilitate comprehensive monitoring and rational planning, but a measure of how such disability affects the life of a child would further improve our understanding.
The North of England Cerebral Palsy Register contains data on children born between 1960 and 1990 to mothers resident in Newcastle, Northumberland, and North Tyneside. This Register includes a unitary measure of impact of disability, comprising six contributing dimensions.2 The functional disabilities described by Pharaoh and colleagues would be captured within the dimensions of mobility, physical independence, and schooling. We reviewed data on children born 1984–9, and identified interesting similarities and differences to the findings of Pharaoh et al.
During 1984–9, there were 57 605 live births in Newcastle, Northumberland, and North Tyneside. Among these live borns were 316 neonatal deaths and 125 cases of cerebral palsy, giving a neonatal mortality rate of 5.5 per 1000 live births and a cerebral palsy rate of 2.2 per 1000 neonatal survivors. Birthweight and clinical type of cerebral palsy were known for all children. Data on the impact of disability are available for 100/125.
Neonatal mortality and cerebral palsy prevalences are almost identical with those found by Pharaoh et al, as is the observation that the type of cerebral palsy differs among different birthweight groups, with the lightest and heaviest groups showing fewer cases of diplegia and more cases of hemiplegia (table1).
Table 2 shows the severity of impact of disability for mobility, physical independence, and schooling. After excluding those of unknown severity, like Pharaoh et al we found that over 40% of children, irrespective of birthweight, have severe mobility problems. Unlike Pharaoh and his colleagues, however, we found no differences in physical independence among birthweight groups (14/51 children born ⩾ 2500 g vs 15/49 of those born < 2500 g had severe problems), and in our cohort, the proportion of children with severe educational problems increased with decreasing birthweight, corresponding to some of the findings of follow up studies of children with low birthweight.3 4
We conclude that a measure of the impact of disability on the lives of children permits greater precision in describing the epidemiology of cerebral palsy.