Predictors of employment in people with open spina bifida at the mean age of 35 years

Background

Many people with spina bifida work in open employment, some despite severe disability.

Objective: To identify predictors of employment in open spina bifida in mature adulthood.

Methods

The Cambridge Cohort comprises 117 consecutive cases of open spina bifida whose backs were closed non-selectively at birth between 1963 and 1971. They have been regularly reviewed with no loss to follow up. In 2002 the survivors were surveyed by postal questionnaire and telephone interview.

Results

Fifty-four (46%) of the cohort survived to the mean age of 35 (range 31 to 38 years). Of these 13 (25%) worked in open, competitive employment. A further four worked in sheltered employment. All the 13 in open employment were of normal intelligence (IQ>80). Only 10 of them needed a CSF shunt, and in 6 of them the shunt had never needed revision. None of them had a severe visual defect or suffered from epilepsy. Only 5 used a wheelchair and 12 drove a car. Six were fully continent without catheter or appliances and none needed daily care. Those in open employment were more likely than the remainder to have an IQ>80 (13/13 versus 26/41 p < 0.05), no CSF shunt or no revisions of shunt (9/13 versus 15/41 p < 0.05), not to need a wheelchair (8/13 versus 8/41 p < 0.05), to drive a car (12/13 versus 8/41 p < 0.0001), and not to need daily care (13/13 versus 21/41 p < 0.01).

Conclusion

Although those working in open employment tended to be less severely affected, two of them were severely disabled showing this is not necessarily a bar to employment. However their motivation was striking. It seems likely that employment prospects were adversely influenced by episodes of symptomatic shunt malfunction, which in some patients markedly reduced both drive and energy.