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Long-term outcome in open spina bifida.

Pippa Oakeshott1, Gillian M Hunt

  • 1Department of Community Health Sciences, St George's Hospital Medical School, London SW17 0RE. oakeshot@sghms.ac.uk

The British Journal of General Practice : the Journal of the Royal College of General Practitioners
|November 7, 2003
PubMed
Summary

Adults born with open spina bifida (a birth defect) show varied long-term outcomes, with survival and independence influenced by initial neurological deficit and cerebrospinal fluid shunt history.

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Area of Science:

  • Medical research
  • Developmental biology
  • Pediatric neurology

Background:

  • Reliable outcome data is crucial for informed decisions regarding termination of pregnancy or postnatal treatment for affected infants.
  • Understanding long-term outcomes for individuals with open spina bifida is essential for clinical practice and parental counseling.

Purpose of the Study:

  • To assess the survival, health status, and lifestyle of a complete cohort of adults born with open spina bifida, followed up to a mean age of 30 years.
  • To provide comprehensive data on long-term functional outcomes in adults with open spina bifida.

Main Methods:

  • Prospective cohort study of 117 consecutive cases of open spina bifida, with non-selective surgical closure at birth between 1963 and 1971.
  • Survivors (aged 26-33 years) were assessed via postal questionnaire and telephone interview, focusing on community living, driving, and open employment.

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Main Results:

  • 51% mortality, with higher rates among the most disabled. Of 57 survivors, 84% had a cerebrospinal fluid (CSF) shunt, 70% had an IQ ≥ 80, 37% lived independently, 39% drove, 30% could walk >50m, and 26% were employed.
  • Significant disability persisted, with one-third requiring daily care, and severe complications including respiratory support, blindness, diabetes, and dialysis reported.
  • Outcomes correlated with initial neurological deficit and history of CSF shunt revisions, impacting attainment and independence.

Conclusions:

  • Survivors from this unselected cohort exhibit a broad spectrum of outcomes, ranging from near-normal to severe disability.
  • The long-term health and lifestyle of individuals with open spina bifida are significantly influenced by the initial neurological impairment and the management of cerebrospinal fluid shunts.