Very long-term follow-up of adults treated in infancy for hydrocephalus

The purpose of this study is to perform a population-based, very long-term follow-up of adults who had been shunt treated for hydrocephalus in infancy.

The 72 children with hydrocephalus born in 1967-1978 in western Sweden, who had participated in a follow-up at school age, were re-examined at 30-43 years of age. The 29 with mental retardation were described in terms of developmental level and survival, whereas the remaining 43 were invited to take part in a follow-up and 28 accepted. The assessments included a semi-structured interview pertaining to medical issues, academic achievements and social function.

Six children had died, i.e. a mortality rate of 8%. Mental retardation was present in 29 (40%), severe (IQ <50) in 13 and mild (IQ 50-70) in 16. Four of the 28 (14%) had cerebral palsy and 8 (28%) had other motor problems. Five (18%) had epilepsy and nine (32%) had visual impairments. A total of 20 (71%) reported some kind of health problem. Repeated revisions of the shunt had been performed in 23 (82%). Many worried about their shunt and requested a systematic medical follow-up. Nineteen subjects (68%) lived with a partner and 16 (57%) were parents. The majority had completed secondary school and 9 (32%) had completed university studies, while 18 (64%) worked full time, equal to the general population.

In general, the group of normally gifted individuals with hydrocephalus, who had been shunt treated during infancy, was functioning well as adults and participated in society to the same extent as other people.