Abstract

BACKGROUND Cause specific research on death certification in chronic disease has rarely involved cerebral palsy.

AIMS To evaluate cause of death information in people known to have cerebral palsy by: describing the cause of death distribution; determining case ascertainment using death certification as the data source; and analysing the choice of wording and its arrangement in the “cause of death statement”.

STUDY CASES AND SETTING People with early or late impairment cerebral palsy who died by 30 June 1998, on the population based Mersey Cerebral Palsy Register born 1966–91 to mothers resident locally.

STUDY DESIGN Descriptive study of the multiply coded cause of death statements from National Health Service Central Register flagging.

RESULTS Death certificate copies were acquired for all 282 (13.4%) of the 2102 registered cases who died. Cerebral palsy was the most common “underlying cause of death” (95 of 282; 33.7%) and was mentioned in a further 61 cases. The underlying cause of death was more likely to be cerebral palsy with increasingly severe disability and was derived from Part II in 16 of 95 cases.

CONCLUSIONS The potential of death certification for case ascertainment of cerebral palsy is important, but limited, even with multiple cause coding. Mortality data need careful interpretation as a proxy source for examining trends and patterns in cerebral palsy.