Objectives To investigate if lifestyle in spina bifida at age 40±3 years, relates to neurological deficit in infancy or cerebrospinal fluid shunt history.
Design Prospective cohort study with 100% ascertainment.
Participants 117 consecutive cases of open spina bifida whose backs were closed non-selectively at birth. In 2007, all 46 (39%) survivors and/or carers were surveyed by postal questionnaires and telephone interviews.
Results Of the 38 children with absent sensation only below the knee (sensory level below L3), 23 (61%) survived of whom 14 (61%) were community walkers and only 5 (22%) needed daily care. But in 42 babies with absent sensation up to the umbilicus (sensory level above T11) only seven (17%) survived, none could walk and five (71%) needed daily care. Survivors with no shunt revisions were more likely to walk, live independently and drive a car.
Conclusion Mobility and the need for care at 40 can be predicted from the neurological deficit.
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Funding This study was supported by the Association for Spina Bifida and Hydrocephalus (ASBAH), UK.
Competing interests None.
Ethical approval This study was approved by the Huntingdon Research Ethics Committee (Reference 07/Q0104/11).
Provenance and peer review Not commissioned; externally peer reviewed.