Research

Lifestyle in adults aged 35 years who were born with open spina bifida: prospective cohort study

Gillian M Hunt¹ and Pippa Oakeshott²

¹  Addenbrooke's Hospital, Cambridge CB2 2QQ, UK

²  Department of Community Health Sciences, St George's Hospital Medical School, London SW17 ORE, UK

author email corresponding author email

Cerebrospinal Fluid Research 2004, 1:4doi:10.1186/1743-8454-1-4

Published:	10 December 2004

Abstract

Background and Methods

From 1963 to 1971, 117 babies with open spina bifida were treated non-selectively from birth. In 2002 we reviewed all the survivors by postal questionnaire and telephone call. The aims were to find out how many were living independently in the community or were in open employment or drove a car. In addition to these achievements we recorded health, medication and admissions to hospital and asked how much daily help they needed.

Results

Ascertainment was 100%. There had been 63 deaths, mainly of the most severely affected. The mean age of the 54 survivors was 35 years. The outcome in terms of disability ranged from apparent normality to total dependency. It reflected both the neurological deficit, which had been recorded in infancy in terms of sensory level, and events in the CSF shunt history. Overall about 2 in 5 of the survivors lived independently in the community, 2 in 5 drove a car, 1 in 5 was in competitive employment and 1 in 5 could walk 50 metres.

Conclusion

Although those who survived to age 35 years tended to be less disabled, 2 in 5 continued to need daily care.