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Expectation of life and unexpected death in open spina bifida: a 40-year complete, non-selective, longitudinal cohort

Pippa Oakeshott1, Gillian M Hunt, Alison Poulton

  • 1Community Health Sciences, St George's, University of London, London, UK. oakeshot@sgul.ac.uk

Developmental Medicine and Child Neurology
|December 18, 2009
PubMed

Insights

Adults with open spina bifida face a high and continuing mortality rate, with many unexpected deaths occurring throughout life. This highlights the need for ongoing medical awareness and care planning for this population.

Area of Science:

  • Medical research
  • Public health
  • Pediatric neurology

Background:

  • Open spina bifida is a complex congenital condition requiring long-term management.
  • Previous studies have not fully characterized long-term survival and causes of death in open spina bifida patients into adulthood.

Purpose of the Study:

  • To investigate the survival rates and causes of death in a complete cohort of individuals with open spina bifida up to a mean age of 40 years.

Main Methods:

  • A prospective, community-based study followed 117 infants born with open spina bifida between 1963 and 1971.
  • Survival data were collected through postal questionnaires, telephone interviews, and official death records.
  • Kaplan-Meier survival curves were used to analyze mortality patterns.

Main Results:

  • One-third of the cohort died before age 5, and an additional 26% died between ages 5 and 40.
  • Mortality in adulthood was over 10 times the national average, with half of these deaths being sudden and unexpected.
  • High neurological deficit, particularly a sensory level above T11, was associated with significantly poorer survival rates.

Conclusions:

  • Contrary to prior assumptions, individuals with open spina bifida experience sustained high mortality throughout adulthood.
  • Unexpected deaths, often linked to epilepsy, pulmonary embolism, hydrocephalus, or sepsis, are a significant concern.
  • Healthcare providers and care planners must recognize the ongoing risks and need for continuous monitoring and support for adults with open spina bifida.
Abstract

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