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Walking and living independently with spina bifida: a 50-year prospective cohort study

Research output: Contribution to journalArticle

Pippa Oakeshott, Alison Poulton, Gillian M Hunt, Fiona Reid

Original languageEnglish
Pages (from-to)1202-1207
Number of pages6
JournalDevelopmental Medicine and Child Neurology
Volume61
Issue number10
Early online date23 Jan 2019
DOIs
Publication statusPublished - 1 Oct 2019

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Abstract

Aim
To describe trends in walking and living independently in a cohort of consecutive cases of spina bifida, followed‐up over 50 years.

Method
From 1972 to 2017, a cohort of 117 (born 1963–1971, 50 males, 67 females) survivors and/or carers was surveyed approximately every 5 years by clinical examination and/or postal questionnaire/telephone interview. The Office for National Statistics provided details of deaths.

Results
The follow‐up in 2016 and 2017 was 99% (116/117). There were 37 survivors (17 males, 20 females) aged 46 to 53 years and 79 deaths (50y survival, 32%). The percentage of survivors who could walk more than 50m at the mean ages of 9 years, 18 years, 25 years, 30 years, 35 years, 40 years, 45 years, and 50 years was 51% (38/75), 50% (34/68), 33% (20/61), 30% (17/57), 30% (16/54), 30% (14/46), 31% (12/39), and 27% (10/37) respectively. However, the percentage living independently in the community after age 25 years increased over time: 23% (14/61); 37% (21/57); 41% (22/54); 39% (18/46); 56% (22/39); and 54% (20/37). Living independently at age 50 years was more common in survivors without a history of raised intracranial pressure or cerebrospinal fluid shunt revisions.

Interpretation
In this unselected cohort, mobility declined with age, possibly because of increasing obesity and deteriorating health. By contrast, partly because survival was better in those least disabled, the percentage living independently increased.

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