Life expectancy in cerebral palsy: an update

Abstract

This paper clarifies and updates some issues of life expectancy in cerebral palsy. These are: (1) the definition of life expectancy and how it is calculated; (2) the secular trends that have occurred since the data for the 1998 paper were collected; (3) revised estimates reflecting improvements of some of the analytical methods and statistics provided in that paper; (4) comparison of life expectancies among countries; (5) issues regarding quality of care; and (6) consideration of prospective life expectations in addition to current life expectancy.This paper discusses and updates the 1998 paper by Strauss and Shavelle on the life expectancy of adults with cerebral palsy (CP) 1 and the 2007 study by Strauss et al.2 Life expectancy and calculationThe standard scientific definition of life expectancy is the average survival time of the members of a population. The life expectancy of a given individual is thus the average survival time in a large group (real or hypothetical) of similar individuals. It should, therefore, be clear that life expectancy does not refer to the actual time that an individual will live (i.e. the individual's actual survival time), which could be much longer or shorter than the life expectancy. Life expectancy can be viewed as a convenient summary of the death rates at all ages, and as such can serve as a measure of health. For example, the steady increase in life expectancies that have been observed for several centuries in developed countries reflects improvements in medicine and public health. Further, in the case of those who are injured and will need compensation for their future care, their life expectancy may be an essential input in the assessment of economic damages. (We have used the qualifier 'may be' because a court may award a lifetime stream of 'periodic payments' rather than a lump sum. In that case an estimate of life expectancy would not necessarily be required by the court, though it would be required by the company that provides the payments.)Life expectancy in CP is of interest for all these reasons. 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. Although this may be reasonable in cases of near-normal life expectancy, it is unreasonable in the case of medical conditions that dramatically alter the See end of paper for list of abbreviations.

Minimising twins in in vitro fertilisation: a modelling study assessing the costs, consequences and cost-utility of elective single versus double embryo transfer over a 20-year time horizon

“…25 In extrapolating long-term costs, we assumed that the modelled disability outcomes would have an adverse effect on life expectancy. For this reason, mortality rates reported for preterm infants with cerebral palsy were used to model survival in disabled infants, 26,27 while standard UK life tables were used to model survival in infants without disability.…”

Mobility in Ambulant Adults with Cerebral Palsy — Challenges for the Future

“…The recent extension of this data to extend to age 21 suggests that deterioration in function may begin in more impaired children from around age 8 (Hanna et al 2009). Such similar curves are not yet available for adults, although trends in data from the large studies by Strauss and colleagues suggest a similar profile of decline (Strauss, Ojdana, Shavelle and Rosenbloom 2004; Strauss et al 2008). A recent systematic review of 16 studies reporting gait decline in adults found variation in the incidence of decline, but with most studies reporting decline affecting around 30% or more of the study participants .…”

“…Adults with CP are a growing community who are now recognised as outnumbering children 3:1 in some countries (Access Economics 2008). With advances in healthcare, it is now usual for those who walk during childhood to have a relatively normal life expectancy (Strauss, Brooks, Rosenbloom and Shavelle 2008). Over recent times, the need to consider CP as a lifespan, rather than childhood condition has been highlighted, with particular interest in the reported difficulties that emerge during the adult years (Tosi et al 2009; .…”

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

“…17 Epilepsy and degree of mental retardation* can further adversely affect survival. 16,18 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.…”

“…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. …”