The findings demonstrate a need for additional health care provider training and resources for birthing people with intellectual and developmental disabilities.
Findings published in JAMA Network Open demonstrate that birthing people with intellectual and developmental disabilities (IDDs), such as autism, had a younger mean age at first delivery and had a lower prevalence of live births compared with their peers without IDDs. Additionally, this population also had poorer obstetric, mental health, and medical outcomes, emphasizing a need for additional training for health care professionals and timely delivery of maternal health care.1,2
For this retrospective cohort study, investigators examined Medicaid data to identify both perinatal and postpartum outcomes among people with IDDs. The examined data consisted of claims from 2008 to 2019 and included a total of 55,440 birthing people with IDDs, as well as 438,557 birthing people who did not have IDDs. Medicaid was selected for this study because it funds almost half of all births and is the largest behavioral health insurer for people in the US. Additionally, both perinatal outcomes (eg, gestational diabetes, gestational hypertension, and pre-eclampsia) and mental health conditions (eg, anxiety disorders and depressive disorders) were compared across the groups, and the probabilities of postpartum anxiety and postpartum depression were evaluated.1,2
“While previous studies have reported an increased risk for challenges related to pregnancy and birth among people with IDDs, little research has been done using US-based population-level data,” Lindsay Shea, DrPH, director of the Policy and Analytics Center in the A.J. Drexel Autism Institute, said in a news release. “Medicaid is a key system to study these risks and opportunities for policy and program improvements because it covers almost half of births in the US and a disproportionate share of people with intellectual and developmental disabilities.”1
According to the findings, birthing people with IDDs were younger at the time of first observed delivery (mean age: 24.9 years) compared with those without IDDs (mean age: 26.4 years). Additionally, those with IDDs also had a lower prevalence of live births (66.6% compared with 76.7%); however, they had higher rates of both obstetric conditions (gestational diabetes: 10.3% vs 9.9%; gestational hypertension: 8.7% vs 6.1%; and pre-eclampsia: 6.1% vs 4.4%) and co-occurring physical conditions (heart failure: 1.4% vs 0.4%; hyperlipidemia: 5.3% vs 1.7%; ischemic heart disease: 1.5% vs 0.4%; and obesity: 16.3% vs 7.4%) compared with those who did not have IDDs.2
The investigators also observed a higher prevalence of mental health conditions in those who had IDDs compared with those who do not. Anxiety disorders (27.9% vs 6.5%) and depressive disorders (32.1% vs 7.5%) were the most common. Additionally, the probability of postpartum anxiety (adjusted hazard ratio [AHR], 3.2 [95% CI, 2.9-3.4]) and postpartum depression (AHR, 2.4 [95% CI, 2.3-2.6]) were also significantly higher in this population, notably those with autism and intellectual disabilities only.2
“Findings from this study underscore an urgent need for attention on Medicaid in supporting birthing people with intellectual and developmental disabilities throughout the perinatal period,” Molly Sadowsky, project director in the Policy and Analytics Center in the Autism Institute, said in the news release. “It’s vital that differences in access to and coordination of postpartum care, as well as related differences in risk for postpartum depression and anxiety, continue to be examined.”1
One limitation of the study is the inability to fully evaluate prenatal care and timing of presentation to pregnancy care, which can affect pregnancy outcomes. Additionally, the authors acknowledge that Medicaid claims data used only included the male and female sexes, noting that the detection of nonbinary perinatal health care being limited during the study years (2008-2019). Care outside of the US Medicaid system was also not observed, which can limit the generalizability to people with IDD who also have private insurance.2
The authors emphasize that these results indicate a crucial need for reproductive health education, increasing health care provider knowledge, and the expansion of Medicaid is necessary to ensure that birthing people with IDD have access to this information. Additionally, they stress that policies should be designed and implemented to better align with the needs of the patients, and clinical guidelines and procedures can also be adapted for these populations.1,2
“Parenthood and reproductive health are important times in everyone’s life to be supported in getting the services and supports that work for each person and for each family,” said Shea in the news release. “We are excited about the future of our work on this topic to find ways that the health care system can do better and we can support people and celebrate their birthing experiences and roles in these tumultuous times in life.”1