Does the Child Health Computing System adequately identify children with cerebral palsy?

Background This paper assesses the usefulness of the Child Health Computing System as a source of information about children with cerebral palsy.

Methods A comparative survey of information held on the Child Health Computing System (CHCS) and the Northern Ireland Cerebral Palsy Register (NICPR) in one Health and Social Services Board in Northern Ireland was carried out. The sample comprised children with cerebral palsy aged 5–9 years.

Results Of the 135 cases recorded on the NICPR, 47 per cent were not found on the CHCS; the majority of these children had no computer record of any medical diagnosis. Of the 82 cases recorded on the CHCS, 10(12 per cent) were not found on the NICPR; five of these cases (6 per cent) were found on follow–up not to have CP.

Conclusions Unless improvements are made in case ascertainment, case validation and recording activities, the evidence suggests that the CHCS will not be able to provide the same quality of information for needs assessment and surveillance of very low birthweight infants in relation to cerebral palsy as is provided by a specialist case register.