Regional Variation in Survival of People With Cerebral Palsy in the United Kingdom

Abstract

Objectives. Regional variation in survival of people who have cerebral palsy (CP) has been observed but not previously investigated in detail. In addition to true differences, variations in the methods and definitions used, completeness of ascertainment, and the role of potential confounding factors all have been proposed as possible explanations for these observed variations. Our aim was to assess the regional differences in survival of young people with CP and the effect on survival of socioeconomic differences after adjustment for variations in level of impairment and birth characteristics. Methods. Survival patterns for young people with CP were calculated using information from a collaborative database. This database consisted of registrations of children who were born with CP in 5 geographically defined areas in the United Kingdom between 1980 and 1996. Notification of subsequent deaths was provided by the relevant births and death register. We consider the effects of birth characteristics, socioeconomic status, and severity of CP on survival. Results. There were 325 deaths among the 4007 cases of CP identified. The proportion of affected children who survived to 20 years of age ranged from 85% (Mersey-side and Cheshire, male individuals) to 94% (North of England, male individuals). Multivariate modeling showed that the severity of impairment had the biggest impact on survival and that additional contributions were made by birth weight and socioeconomic status but that after such adjustments regional differences were no longer significant. Conclusions. The number and the severity of impairments are the best predictors of survival in young people with CP. After adjustment for the number of impairments, children who were born in affluent areas and had a low birth weight have an increased risk for death over those who were born with a normal birth weight. The same does not hold, however, for those who were born in deprived areas.

Life expectancy in cerebral palsy: an update

“…Hutton et al 4 found no birth cohort effect for children of normal birthweight but some effect for low birthweight. Hemming et al 3 reported 'no evidence of any secular changes in survival'. Further, although only indirectly relevant to CP, recent work on individuals with spinal cord injury 9 indicates that the improvements in survival are largely confined to the critical first few years after injury.…”

“…13 The study also noted comparability of estimates from the California and the UK. Figure 1 compares survival of children with severe disabilities in the California database and the 2005 study of Hemming et al 3 The survival curve from the Hemming et al 3 study is for children with 'four severe disabilities'. These are with respect to ambulation, cognitive function, hand use, and visual function.…”

“…As evaluations in the UK database are made at the approximate age of 4 years, we worked with a California cohort of children at that age. For the Hemming et al 3 study we plotted the probabilities of survival conditional on being alive at age 4.…”

“…As a result there has been a continuing flow of publications on the longevity of individuals in this group. Some of the more recent are Hemming et al, 3 Hutton and Pharoah, 4,5 Blair et al, 6 and Strauss et al 2,7 There are different general approaches to the estimation of life expectancy. The so-called top-down approach starts with the general population figure and then subtracts years for various adverse factors.…”

Survival of individuals with cerebral palsy receiving continuous intrathecal baclofen treatment: a matched‐cohort study

“…Mortality rates are higher, and survival probabilities lower, for those with more severe CP, severity being measured by simple functional variables including gross and fine motor skills (ambulation, rolling, or crawling) and feeding ability. [12][13][14][15][16] Comparisons of survival rates in persons with CP in the USA, the UK, and Australia that have accounted for these basic functional vari- The purpose of the present study was to determine whether ongoing management of hypertonia with ITB is associated with an increase in the long-term risk of mortality in persons with CP. …”