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

Oakeshott, P; Poulton, A; Hunt, GM; Reid, F (2019) Walking and living independently with spina bifida: a 50-year prospective cohort study. Dev Med Child Neurol. ISSN 1469-8749
SGUL Authors: Oakeshott, Philippa Reid, Fiona Dorothy Alexandra

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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.

Item Type: Article
Additional Information: © 2019 The Authors Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.
Keywords: 11 Medical And Health Sciences, Pediatrics
SGUL Research Institute / Research Centre: Academic Structure > Population Health Research Institute (INPH)
Journal or Publication Title: Dev Med Child Neurol
ISSN: 1469-8749
Language: eng
23 January 2019Published
4 December 2018Accepted
Publisher License: Creative Commons: Attribution-Noncommercial 4.0
PubMed ID: 30674090
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