Current situation of young adults in a multidisciplinary spina bifida unit

Background

Spina Bifida is a plurimalformative syndrome affecting CNS, musculoskeletal and urogenital systems. The association with other congenital malformations including cardiac, vertebral and urological is not uncommon. Myelomeningocele, which is the most severe form of spina bifida, is a complex syndrome resulting in serious physical disability.

Materials and methods

We conducted a retrospective analysis of 100 adult patients aged 18 to 25 years old with the diagnosis of Myelomeningocele, Meningocele, Sacral anomalies associated with Meningocele and Lipomyelomeningocele regularly controlled in our multidisciplinary Spina Bifida Unit which attends a total of 500 patients all over the country.

We collected the data from the medical history, radiographic records and also performed an interview with each patient included in this study.

In this retrospective analysis we collected information concerning two aspects: medical and social variables.

The medical data included diagnosis, level of lesion, presence or absence of shunted hydrocephalus, vertebral malformations, intelligence quotient (IQ), urological and faecal incontinence, re-education of both incontinence, orthosis and ambulation assessed using the Hoffer criteria.

The social data included level of education, employment, marital status, driving, and independence for daily living activities.

Results

A total of 100 patients were included in this study: 57 male and 43 female. The mean age was 21.3 (± 2.3, range 18–25) years. Myelomeningocele represented 91% of the sample. Regarding functional neurological level, 70% of patients belonged to lumbar (medium and low) or sacral. Hydrocephalus was present in 92% of them and 65% required the placement of a shunt. A total of 48% of the sample had a normal IQ. The 59% of the cases had some type of spinal deformity. 57 patients reached community ambulation whereas 24 were wheelchair-dependent. All patients except one case of meningocele were urine incontinent. Faecal and urinary re-education was achieved in 77.5% and 75.3% of our patients respectively. On the social aspect, the majority of our patients were single, had no children, were living with their parents and had a low educational level and work incorporation.

Conclusion

In the description of the actual situation of a large series of young adults with spina bifida regularly controlled in our multidisciplinary unit, it stands out that half of the sample are community ambulators and more than three quarters are faecal and urinary re-educated. The profile of our patients is single, living with parents and with low educational level and work incorporation