Cerebral Palsy (CP)

A list of published articles and manuscripts under review is available on the articles page.

See also our correction of the life tables by Eyman et al. (1990).

Below is an unpublished letter to the editor.

Survival of children with cerebral palsy: Better than often thought

The survival prospects of children with cerebral palsy are frequently underestimated. In medicolegal opinions, for example, physicians often give a life expectancy of 10 additional years or less. Although such figures may be correct for children in a vegetative state,1,2 they are rarely so otherwise.

There are a number of reasons for underestimation of life expectancy:

  1. Survival in cerebral palsy a few decades ago was much poorer than it is now.3

  2. Many studies of longevity in cerebral palsy follow cohorts of infants.4-6 It must be recognized that survival prospects for those surviving the critical first few years are much better.

  3. Two frequently-cited studies give very pessimistic prognoses.7,8 These studies, however, have been questioned.9,10

  4. Life expectancy is sometimes confused with median survival time, the latter being shorter in high-risk children.3

To illustrate, we give life expectancies for several near-worst case scenarios. The calculations are based on our California population of 44,000 persons with cerebral palsy. The methodology has been described11 and applied12,13 elsewhere. All figures pertain to an eight year-old child with cerebral palsy and quadriplegia, and severe or profound mental retardation. Children in a vegetative state have been excluded, as have those fed by gastrostomy tube.

Table. Life expectancy (average additional years of survival) for 8 year-old children with cerebral palsy, who are quadriplegic and severely or profoundly mentally retarded, based on rolling & sitting ability.

Condition

Life Expectancy

Unable to roll or sit

20.7

Able to lift head when lying on stomach, but unable to lift chest or to roll or sit

22.4

Sits in wheelchair, does not assist in moving it

38.8

The prognosis for children with mobility is much more optimistic. For instance, the life expectancy of 8 year-old children with cerebral palsy who have the ability to roll or sit (or better) is on average 54 additional years.

These are merely examples; more accurate results for a given individual are obtained by a "customized" life expectancy analysis.11 Nevertheless, they do indicate that even children with extreme disabilities have at least a moderate life expectancy.


References
  1. Ashwal S (1994). The persistent vegetative state in children. Advances in Pediatrics, 41:195-222.
  2. Ashwal S, Eyman RK, Call TC (1994). Life expectancy in children in persistent vegetative state. Pediatric Neurology, 10:27-33.
  3. Eyman RK, Strauss DJ, Grossman HJ (1996). Survival of children with severe developmental disability. In: L Rosenbloom (Ed.), Diagnosis and management of neurological disabilities in childhood. Bailliere's Clinical Pediatrics, pp.543-556. London: Bailliere Tindall, Harcourt Brace & Co. Ltd..
  4. Chrichton JU, Mackinnon M, White CP (1995). The life expectancy of persons with cerebral palsy. Develepmental Medicine & Child Neurology, 37:567-576.
  5. Hutton JL, Cooke T, Pharoah POD (1994). Life expectancy in children with cerebral palsy. BMJ, 309:431-435.
  6. Strauss DJ, Shavelle RM, Anderson TW (1998). Life expectancy of children with cerebral palsy. Pediatric Neurology, 18:143-149.
  7. Eyman RK, Grossman HJ, Chaney RH, Call TL (1990). The life expectancy of profoundly handicapped people with mental retardation. New England Journal of Medicine, 323:584-589.
  8. Eyman RK, Grossman HJ, Chaney RH, Call TL (1993). Survival of profoundly disabled people with severe mental retardation. American Journal of Diseases of Children, 147:329-336.
  9. Strauss DJ (1997). Life expectancy of children with cerebral palsy. The Lancet, 349:283-284.
  10. Strauss DJ, Shavelle RM (1998). Response to letter by Grossman and Eyman. Pediatric Neurology, 19:243-244.
  11. Strauss DJ, Shavelle RM (1998). Life expectancies of persons with chronic disabilities. Journal of Insurance Medicine, 30:95-107.
  12. Strauss DJ, Shavelle RM (1998). Life Expectancy of adults with cerebral palsy. Developmental Medicine & Child Neurology, 40:369-375.
  13. Strauss DJ, Shavelle RM, Anderson TW (1998). Long-term survival of children and adolescents after traumatic brain injury. Archives of Physical Medicine and Rehabilitation, 79:1095-1100.