First study of pregnant women with intellectual and developmental disabilities reveals mothers and babies have poorer health outcomes

February 12, 2015

The first population-based study of pregnant women with intellectual and developmental disabilities in the United States reveals that these mothers and their babies are at a greater risk of adverse outcomes that include preterm birth, low birth weight and low Apgar scores. The study was led by researchers at UMass Medical School, who were recently awarded a five-year grant from the National Institutes of Health to further investigate those disparities. 

“This examination of pregnancy-related risks and complications for women with intellectual and developmental disabilities tells us, for the first time, who these mothers are and what they are facing while pregnant and at delivery. This population of women is often excluded from traditional research, which has led to a huge gap in understanding,” said lead researcher Monika Mitra, PhD, 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. Karen Clements, MPH, ScD, from the Commonwealth Medicine division is a co-author.

As a result of these findings, the National Institutes of Health in January awarded UMass Medical School and Brandeis University a five-year grant to investigate further. Researchers will track pregnancy and childbirth complications, health outcomes, inpatient and outpatient health care utilization and costs – both before and after delivery – among women with intellectual and developmental disabilities across the United States using national and Massachusetts health care data. The idea is to learn why these women and their babies fare worse than those without disabilities, and develop new prenatal care recommendations to prevent those poor outcomes.

“We will systematically investigate pregnancy experiences and barriers to care for women with intellectual and developmental disabilities, and their infants. We will use the findings to develop practice recommendations for improving perinatal care for these women,” Dr. Mitra said.

The NIH-funded study will include interviews with Massachusetts and North Carolina women with intellectual and developmental disabilities, Mitra said. Obstetric care providers will also be interviewed.

Published in the American Journal of Preventive Medicine in December 2014, the study examined all in-state deliveries to Massachusetts residents from 1998 to 2009. Of those, 703 deliveries were to women with intellectual and developmental disabilities. Those deliveries were associated with an increased risk of adverse outcomes, including preterm delivery, very low and low birth weight babies, and low Apgar scores.

The study also found women with intellectual and developmental disabilities were younger, less educated, less likely to be married and less likely to identify the father on the infant’s birth certificate. They were also more likely to smoke during pregnancy, and less likely to receive prenatal care during the first trimester compared to women without disabilities. The study had co-authors from the Heller School for Social Policy and Management at Brandeis University and the Massachusetts Department of Public Health.