Abstract General Information

Title

SOCIO-DEMOGRAPHIC PROFILE OF PATIENTS WITH SPINA BIFIDA ASSOCIATED TO A NON-GOVERNMENTAL ORGANIZATION FROM BRAZIL

Introduction and objective

Myelomeningocele is a malformation of the Central Nervous System (SNC), the most severe form of spina bifida, and consists of the non-closure of the neural tube, with the protrusion of a sac containing the spinal cord, the nerval roots and the meninges, that are left exposed. It has a series of consequences if not properly diagnosed and treated early on, including urinary and fecal incontinence. The Brazilian Association of Spina Bifida (ABRASSE) is a Non-governmental Organization which aims to advocate for spina bifida patients and families. This research intended to gather data surrounding patients with myelomeningocele and to attempt to establish a socio-demographic profile of their families, as well as to investigate the incidence of prenatal intervention and of certain complications, such as hydrocephalus, neurogenic bladder and intestines.

Method

The data for this study was obtained via online questionnaire sent to ABRASSE associates, with a wide range of questions regarding socio-economic background of the families, as well as the medical history of myelomeningocele patients, including their diagnosis, previous interventions and surgical procedures and the complications with which they live.

Results

ABRASSE has 941 associates with spina bifida and the formulary gathered 307 responses (one third of total). The results revealed the most common profile of a patient with myelomeningocele and their family: born in Brazil’s countryside (n=203, 66%), with siblings (n=192, 63%), fruit of an unplanned pregnancy with prenatal care (n=301, 98%). The intake of folic acid was about 50% and the average family revenue was variable, with about a third of the families (n=137, 44%) living with less than two minimum salaries. Less than a third (n=95, 31%) of the babies underwent intrauterine surgery. The majority of the children presented with hydrocephalus (n=234, 76%), neurogenic bladder (n= 259, 84%) and neurogenic bowel (n= 230, 75%).

Conclusion

This survey offers an insight to the reality of patients born with myelomeningocele in Brazil, however, there is still the need for further inquiries.