Pregnancy Outcomes Among US Women with Intellectual Disabilities

Schedule:
Friday, January 16, 2015: 3:50 PM
Preservation Hall Studio 4, Second Floor (New Orleans Marriott)
* noted as presenting author
Susan L. Parish, PhD, MSW, Nancy Lurie Marks Professor of Disability Policy and Director, Lurie Institute for Disability Policy, Brandeis University, Waltham, MA
Monika Mitra, PhD, MSW, Research Scientist, University of Massachusetts Medical School, Shrewsbury, MA
Esther Son, PhD, Assistant Professor, College of Staten Island, City University of New York, staten Island, NY
Alexandra Bonardi, OTR/L, MHA, Director, Center for Developmental Disabilities Evaluation and Research, University of Massachusetts Medical School, Shrewsbury, MA
Paul T. Swoboda, MS, Senior Associate, University of Massachusetts Medical School, Shrewsbury, MA
Leah Igdalsky, Research Associate, Brandeis University, Waltham, MA
Background & Purpose

After decades of legal and illegal constraints, US women with developmental disabilities have had the legal right to procreate since the 1970s. However, there is no information about pregnancy outcomes of US mothers with developmental disabilities or their infants. The existing research in this area is from Scandinavia and Australia and suggests elevated rates of adverse outcomes for these women and their infants during and following pregnancy. The existing dearth of US research led us to test the following hypotheses: (1) women with developmental disabilities will have worse pregnancy outcomes compared to other mothers; and (2) infants of women with developmental disabilities will have worse health outcomes at birth compared to infants born to other mothers.

Methods

This study analyzed hospital discharge data from the Nationwide Inpatient Sample, which is part of the Healthcare Cost and Utilization Project. The Nationwide Inpatient Sample is the largest US all-payer, inpatient health care database and it provides nationally-representative estimates of US hospital inpatient stays. The 2010 dataset included 1,051 hospitals from 45 states. Our analytic sample included three groups: (1) women with developmental disabilities (n=340); (2) women without developmental disabilities and without diabetes mellitus (n=768,891); and (3) women with diabetes mellitus but without developmental disabilities (n=7,095). Women with diabetes mellitus (not gestational diabetes) comprised a second comparison group because they have high risk for adverse pregnancy outcomes compared to other women. Descriptive bivariate analyses and multivariate regression analyses were performed. Covariates included age, race, ethnicity, and insurance type.

 

Results

Having developmental disabilities was associated with an increased risk of adverse perinatal outcomes compared to the general obstetric population (women without developmental disabilities or diabetes), even after adjustment for covariates that have a robust association with adverse outcomes. Women with developmental disabilities had similar or worse outcomes than women with diabetes in terms of prolonged pregnancy, other complications of pregnancy, umbilical cord complications, and trauma to the perineum and/or vulva. Both women with developmental disabilities and women with diabetes had significantly longer days in the hospital for delivery compared to the general obstetric population, for deliveries with and without complicating conditions. Women with developmental disabilities were significantly more likely than women in the general obstetric population to have Caesarean delivery, early or threatened labor, other complications of pregnancy, preeclampsia or hypertensive complications, and preterm birth.

Conclusions & Implications

The elevated risk of adverse pregnancy and infant health outcomes among women with developmental disabilities signals an immediate and urgent need for policy and practice interventions to improve these outcomes. The costs of these adverse outcomes are likely to be high. Mothers with developmental disabilities may need education and training to improve their likelihood of having healthy pregnancies. Health care providers may need to take assertive steps to provide better quality care to these highly vulnerable women and their children.