David A. Strauss

Survival in cerebral palsy in the last 20 years : signs of improvement?

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.

Long-term causes of Death after traumatic brain injury

Shavelle RM, Strauss D, Whyte J, Day SM, Yu YL: Long-term causes of death after traumatic brain injury. Am J Phys Med Rehabil 2001;80:510–516. ObjectiveTo determine which causes of death are more frequent in persons with traumatic brain injury (TBI), and by how much, compared with the general population. Our focus was the period beginning 1 yr after injury. DesignSubjects were 2320 Californians with long-term mental disability after a TBI at age 10 yr or more, followed up between 1988 and 1997. The units of study were person-years, each linked to the subject’s age, gender, level of ambulation, time since injury, and cause of death (if any) for the specific year. Observed numbers of cause-specific deaths were compared with numbers expected according to general population mortality rates. ResultsMortality was higher between 1.0 and 5.0 yr postinjury than after 5.0 yr and was strongly related to reduced mobility. Death rates were elevated for circulatory diseases, respiratory diseases, choking/suffocation, and seizures, with seizure deaths being relatively frequent, even among the most ambulatory. ConclusionsDeath rates for several causes are elevated in persons with long-term sequelae of TBI. The increased risk of choking/suffocation should be of interest to caregivers. Life expectancy seems to be reduced, even for patients who are fully ambulatory.

Life expectancy in cerebral palsy: an update

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.

Low Weight, Morbidity, and Mortality in Children With Cerebral Palsy: New Clinical Growth Charts

OBJECTIVE: To determine the percentiles of weight for age in cerebral palsy according to gender and Gross Motor Function Classification System (GMFCS) level and to identify weights associated with negative health outcomes. PATIENTS AND METHODS: This study consists of a total of 102 163 measurements of weight from 25 545 children with cerebral palsy who were clients of the California Department of Developmental Services from 1988 through 2002. Percentiles were estimated using generalized additive models for location, scale, and shape. Numbers of comorbidities were compared using t tests. The effect of low weight on mortality was estimated with proportional hazards regression. RESULTS: Weight-for-age percentiles in children with cerebral palsy varied with gender and GMFCS level. Comorbidities were more common among those with weights below the 20th percentile in GMFCS levels I through IV and level V without feeding tubes (P < .01). For GMFCS levels I and II, weights below the 5th percentile were associated with a hazard ratio of 2.2 (95% confidence interval: 1.3–3.7). For children in GMFCS levels III through V, weights below the 20th percentile were associated with a mortality hazard ratio of 1.5 (95% confidence interval: 1.4–1.7). CONCLUSIONS: Children with cerebral palsy who have very low weights have more major medical conditions and are at increased risk of death. The weight-for-age charts presented here may assist in the early detection of nutritional issues or other health risks in these children.

Common Law Constitutional Interpretation

The Constitution of the United States is a document drafted in 1787, together with the amendments that have been adopted from time to time since then. But in practice the Constitution of the United States is much more than that, and often much different from that. There are settled principles of constitutional law that are difficult to square with the language of the document, and many other settled principles that are plainly inconsistent with the original understandings. More important, when people interpret the Constitution, they rely not just on the text but also on the elaborate body of law that has developed, mostly through judicial decisions, over the years. In fact, in the day-today practice of constitutional interpretation, in the courts and in general public discourse, the specific words of the text play at most a small role, compared to evolving understandings of what the Constitution requires.

Prognosis for survival and improvement in function in children with severe developmental disabilities

OBJECTIVE To derive prognostic data for survival and clinical improvement in children with severe developmental disabilities. STUDY DESIGN A 13-year follow-up study of several cohorts of children initially evaluated before their first birthday. The outcomes studied were survival and improvement in condition. Methods were used to overcome limitations in previously published work on the same California data base. Of the 11,912 children who received services from the California Department of Developmental Services between January 1980 and December 1993, we focused on three cohorts defined according to mobility and need for tube feeding. RESULTS Children who were tube fed and unable to lift their heads by ages 3 to 12 months were at high risk for early death, with a median remaining life expectancy of 3.2 years. Of those who survived an additional 2 years, the condition of about one third improved. A substantial majority of those who either showed improvement or died had done so by that age. CONCLUSION By age 5 years, the prognoses for survival and improvement have to a large extent been clarified. For children who survive to age 5 years, even those in the lowest functioning cohort have a 60% chance of surviving an additional 5 years. Detailing the probabilities of various outcomes at various ages should be useful to parents, pediatricians, and others concerned with children with developmental disabilities.

Mortality of adults with developmental disabilities living in California institutions and community care, 1985-1994

We compared risk factor-adjusted mortality for California adults with developmental disabilities based on 22,576 adults receiving services in California, 1985-1994. Mortality rates were adjusted for factors such as age and level of functioning. Risk factor-adjusted mortality was 72% higher in community care than in institutions. The mortality pattern over the years 1993-1994, which had not previously been studied, was comparable to that of 1985-1992. The substantially increased risk in community care suggests that community settings may be less effective in preventing mortality in this population.

Mortality in Persons with Developmental Disabilities after Transfer into Community Care.

More than 2,000 persons with developmental disabilities have been transferred from California state institutions into community care in recent years. We investigated whether this has been accompanied by a change in mortality rates, using data on 1,878 clients moved since April 1993. Mortality rates were compared to those expected for comparable persons in institutions. Risk-adjusted mortality rates for movers exceeded institutional rates by 51%, p < .05. After removal of cancer deaths in both groups, this increased to 67%. The effect was largest shortly after the move and in the subjects who had moved most recently. The deinstitutionalization process in California appears to have resulted in a substantial increase in mortality, indicating the need to ensure continuous, consistent, and competent medical care and supervision in the community.

Mortality of persons with developmental disabilities after transfer into community care: a 1996 update.

More than 2,000 persons with developmental disabilities have recently been transferred from California institutions into community care. Using data on 1,878 clients moved between April 1993 and December 1995, Strauss et al. (1998) found a corresponding increase in mortality rates. In the present report we update that study by analyzing 1996 data. There were 36 deaths, an 88% increase in risk-adjusted mortality over that expected in institutions, p < .01. We again found that persons transferred later were at higher risk than those moving earlier, even after adjustment for differences in risk profiles. In the highest functioning group, the community mortality rate was tripled. Death certificate information was also analyzed.

An extended Kaplan–Meier estimator and its applications

We develop an extension of the Kaplan-Meier estimator for the case of multiple live states. The method can be used to construct prognostic charts for tracking individuals initially in a given condition. It is also the key component in constructing a longitudinal version of the multistate life table.