I want to thank the Scientific Committee for inviting us to present our work. We have no disclosures. The MOMS trial was a landmark study. This randomized controlled trial showed that fetal surgery reduced the need for shunting and improved motor outcomes at 30 months of age for children with myelomeningocele. Longitudinal studies of MOMS trial participants show sustained benefits of fetal surgery. These patients are more likely to ambulate, they have equal cognitive outcomes at school age, but improved parent-reported measures of self-care, improved quality of life scores, and improved family impact scores. They are also less likely to require shunt revisions if they had a shunt placed. Less attention has been directed at the sociodemographic background of MOMS trial participants. 92% of the mothers enrolled in the trial were white and living with their partner. Average years of schooling was 15 years. This suggests a homogenous, socially stable, and well-educated population. Average studies of myelomeningocele patients have shown a more diverse population of patients than is captured in the MOMS trial. An earlier review of NSBPR patients showed 64.5% had a white, non-Hispanic, racial, and ethnic background, and only 45% of patients had commercial primary insurance. An increasing body of literature suggests that race, ethnicity, and social determinants of health, such as income, wealth, insurance status, and education level, can have a profound effect on health outcomes. We sought to determine the sociodemographic background of myelomeningocele patients having fetal surgery versus those having traditional postnatal repair. This was a single center retrospective review using Children's Wisconsin institutional data from the National Spina Bifida Patient Registry. Data was abstracted last year for children in the registry at Children's Wisconsin with open myelomeningocele born between 2000 and 2019. The zip code was used in two ways. First was to determine the median household income for that zip code using U.S. Census data, and second was to determine the Distressed Community Index, which is a composite socioeconomic ranking with scores ranging from 0, no distress, to 100, severe distress. Here are our results. We identified 23 fetal surgery patients and 182 postnatal repair patients. There was a statistically significant difference in the age between the two groups, likely reflecting the limited availability of fetal surgery from 2000 to 2010. There was a significant difference in insurance status. All fetal surgery patients had commercial primary insurance compared to only 52% of the postnatal patients. Our institution as a whole has a commercial insurance rate of 52% as well. There was a substantial difference in race and ethnicity as well, with nearly all of the fetal surgery patients having a white, non-Hispanic, racial, and ethnic background. However, this did not meet the threshold for statistical significance. Fetal surgery patients tended to come from areas with higher median income and less community distress, but this was not statistically significant. There are a number of limitations to the study. This was a single-center review with a small cohort of fetal patients. All of the markers used are imperfect metrics of socioeconomic well-being. The NSBPR does not collect data on level of parent education, parental occupation, or whether the mother and the father of the child live together. The vast majority of our patients are enrolled in the NSBPR, but it does not reflect our entire population of patients. Finally, access to fetal surgery for patients between 2000 and 2010 was limited by the MOMS trial. In conclusion, the single institution data suggests that there is a sociodemographic disparity in access to fetal surgery. It remains unknown whether spina bifida patients with a more diverse socioeconomic background treated with fetal surgery would have the same sustained improvements as observed in the MOMS trial cohort. Data from a larger sample of the NSBPR is justified. Interventional fetal centers should devote resources to mitigate disparities in access to fetal surgery.

sociodemographic background

fetal surgery

access to fetal surgery

research

MOMS trial cohort