This study examined growth of children and adolescents with cerebral palsy (CP) who received services from the California Department of Developmental Services from 1987 to 2002. In all, 141 961 measurements of height and weight were taken from 24920 patients with CP (14103 males, 10817 females). Centiles of weight and height were determined by age, sex, and five levels of functional ability ranging from fully ambulatory to unable to walk, crawl, or feed self, and fed via gastrostomy tube. Resulting charts of height and weight centiles were compared with Centers for Disease Control and Prevention weight and height charts for the general population of the US. Centiles of height and weight of patients with CP were close to those of the general population for the highest functioning groups with CP, but lagged substantially for other groups. Presence of a feeding tube was associated with greater height and weight in the lowest functioning groups, with centiles for weight being 2 to 5kg higher for those with gastrostomy tubes. The charts may assist in early identification of nutritional or metabolic difficulties beyond what might be expected for patients with similar functional disabilities.

This study investigated the possibility of improved survival in cerebral palsy (CP) over a 20-year period. Participants were 47 259 persons with CP receiving services from the State of California between 1983 and 2002. The person-year approach was used. This asks whether the probability of dying in a given calendar year changes over the study period after age and severity of disability are taken into account. An appreciable improvement over time was found in children with severe disabilities and in adults who required gastrostomy feeding. In these groups, mortality rates fell by 3.4% per year. Therefore, life expectancies reported in earlier studies should be increased by approximately 5 years if adjustments to 2002 mortality rates are made. For other persons with CP there was, at most, a small improvement over the 20-year period. The results suggest there have been improvements in the treatment and care of the most medically fragile children. Gastrostomy feeding has become much more widespread over the past two decades, and the improved survival of persons with gastrostomies may reflect better understanding of their requirements.There is little doubt that survival in cerebral palsy (CP) has improved over the past half-century. 1 However, no clear improvement in survival over the past two to three decades has been documented in the literature on CP. Although Strauss et al., 2 in their Californian study of children with CP, observed some improvement over time, it was not statistically significant. No evidence for such a trend was found in the Australian study of Blair et al., 3 the UK studies of Hutton et al, 4,5 and the Californian study of adults by Strauss and Shavelle. 6 Such an improvement would be an example of a secular trend. Secular trends have been reported in spinal cord injury over a 20-year period, 7,8 and for infants in a vegetative state over a 15-year period. 9 Secular trends in survival are of interest for at least two reasons. First, when referring to longevity studies in the literature the reader will want to know whether the published estimates need to be revised upwards and, if so, by how much. Second, such trends may be a marker for progress in medical treatment and therapy. For example, a 1992 article on fundoplication in children with profound neurological disability (Smith et al. 10 ) was subtitled 'High risks and unmet goals'. However, anecdotal evidence suggests that since the 1980s there has been a better understanding of the importance of appropriate nutritional status in children and adults with disabilities. Further, there has been a greater appreciation of the risks of aspiration, improvements in surgical procedures for gastrostomy and fundoplication, and progress in gastrostomy-feeding techniques. As a result, it seems unlikely that Smith's subtitle would apply today. Nevertheless, so far, no such improvement appears to have been documented in a published study on mortality or morbidity in CP.To identify a possible secular trend in survival in CP, it is necessary to control for fa...

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.

AIM The aim of the study was to determine survival probabilities and life expectancies for individuals with cerebral palsy based on data collected over a 28-year period in California.METHOD We identified all individuals with cerebral palsy, aged 4 years or older, who were clients of the California Department of Developmental Services between 1983 and 2010. Kaplan-Meier survival curves were constructed for 4-year-old children, and the estimated survival probabilities were adjusted to reflect trends in mortality by calendar year. For persons aged 15, 30, 45, and 60 years, separate Poisson regression models were used to estimate age-, sex-, and disability-specific mortality rates. These mortality rates were adjusted to reflect trends of improved survival, and life expectancies were obtained using life table methods. RESULTSThe sample comprised 16 440, 14 609, 11 735, 7023, and 2375 persons at ages 4, 15, 30, 45, and 60 years, respectively. In 1983, 50% of 4-year-old children who did not lift their heads in the prone position and were tube fed lived to age 10.9 years. By 2010, the median age at death had increased to 17.1 years. In ambulatory children the probability of survival to adulthood did not change by more than 1%. Life expectancies for adolescents and adults were lower for those with more severe limitations in motor function and feeding skills, and decreased with advancing age. Life expectancies for tube-fed adolescents and adults increased by 1 to 3 years, depending on age and pattern of disability, over the course of the study period.INTERPRETATION Over the past three decades in California there have been significant improvements in the survival of children with very severe disabilities. There have also been improvements to the life expectancy of tube-fed adults, though to a lesser extent than in children.For individuals with cerebral palsy (CP), the determination of survival prognosis and life expectancy is important for medical and financial planning, including the determination of expected total lifetime care costs. Survival probabilities or life expectancies for persons with CP have been reported in several populations, including California, the UK, Australia, Canada, Sweden, and Japan.1-14 The most useful studies for prognosis are those that provide figures specific to children or adults of a particular age and severity of disability. In such studies, survival probabilities have been shown to be very similar across countries. 2,13,14 The survival figures from the published studies are based on persons with CP who were followed over the last several decades. 2,13,14 Whether survival probabilities or life expectancy estimates computed from these historical cohorts pertain to children and adults today is not always clear. In our companion article we documented significant improvements in mortality for children and tube-fed adolescents and adults with CP in California over the last 30 years. Survival probabilities and, by extension, life expectancies based on historical data from California should be adj...

The authors studied the pattern of functional abilities and decline of skills in adults with cerebral palsy. The data source was the California Developmental Disabilities data base, which included 904 subjects of age 60. For those individuals who are mobile when they become adults, there is a marked decline in ambulation, especially in late adulthood, and few of the 60 year-olds who walked well preserved this skill over the following 15 years. Older subjects frequently also lost the ability to dress themselves. Many other skills, however, seemed to be well preserved, including speech, self-feeding and the ability to order meals in public. Whereas the great majority of young adults lived in their families' home or in small private group homes, 18% of the 60 year-olds lived independently or semi-independently, and 41% resided in facilities providing a higher level of medical care. Survival rates of the ambulatory older adults were only moderately worse than the general population. Survival was, however, much poorer among those who had lost mobility.