The first nationwide study of pregnant women with developmental and intellectual disabilities from UMass Medical School and Brandeis University has found high rates of complications including fetal death, preeclampsia and preterm birth, according to a Sept. 11 article published by Autism Speaks Science News. The study found that women with these disabilities fare worse than the general population and could benefit from additional education and intervention.
“We want to learn why these women and their babies fare worse than those without disabilities,” co-author Monika Mitra of UMass Medical School said in the Autism Speaks Science News article. “We plan to use the findings to develop practice recommendations for improving perinatal care for these women.”
Published in this month’s edition of the American Journal on Intellectual and Developmental Disabilities, the study analyzed discharge data from 1,051 hospitals in 45 states in 2010 and found 1,706 women classified by hospital codes as having intellectual and developmental disabilities.
Pregnancies among these women were associated with a higher likelihood of poor pregnancy outcomes that include:
- Preterm birth
- Caesarean section
- Longer hospital stays
- Fetal death
“We undertook this study because there is a large gap in understanding this population of women, who are often excluded from traditional research. We discovered that these women have more complex, complicated pregnancies than the general obstetrics population,” said Mitra, an associate professor in UMass Medical School’s Department of Family Medicine and Community Health and a research scientist within UMass Medical School’s Disability, Health and Employment Policy Unit.
These adverse pregnancy outcomes are often associated with higher health costs, according to the study. The health outcomes of the babies born to these mothers could also lead to higher medical costs because, for example, preterm delivery is associated with a variety of health and developmental problems.
“Our research suggests that health care providers may need training to better understand and support pregnant women with intellectual and developmental disabilities, who may benefit from interventions to improve their knowledge and self-efficacy,” said co-author Susan L. Parish, PhD, MSW, the Nancy Lurie Marks Professor of Disability Policy at Brandeis University and director of the Lurie Institute for Disability Policy. “Not meeting the needs of these patients when they are pregnant can have a lasting impact on not only their health, but that of their children.”
This new study has similar findings of an earlier examination that focused on Massachusetts and was published in the December 2014 edition of the American Journal of Preventive Medicine. Led by Mitra, that study of pregnant women with IDD found deliveries were associated with an increased risk of preterm delivery, very low and low birth weight babies, and low Apgar scores.
Researchers at Brandeis and UMass Medical School will now focus on investigating these disparities with funding from the National Institutes of Health. They will use national health care data to track pregnancy and childbirth complications, health outcomes, inpatient and outpatient health care utilization and costs among women with intellectual and developmental disabilities across the United States. Obstetric care providers and women with intellectual and developmental disabilities will also be interviewed.