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November 11, 2024
Quarterly Opinion
Heidi L. Allen
Jamie R. Daw
Dec 11, 2024
Sep 25, 2024
Jul 31, 2024
Back to The Milbank Quarterly Opinion
Rates of maternal mortality in the United States increased sharply during the Covid-19 pandemic, with evidence of widening racial disparities.1 Reducing pregnancy-related mortality—deaths during or within one year of pregnancy from any causes related to or aggravated by pregnancy—has become a major priority for policymakers at the local, state, and federal levels. Progress in developing and evaluating evidence-based interventions to decrease maternal deaths will require significant improvements to national maternal health data infrastructure. While Maternal Mortality Review Committees (MMRCs) and the Centers for Disease Control and Prevention (CDC) Pregnancy Mortality Surveillance System have advanced our understanding of the timing and direct causes of maternal mortality, there are major gaps. In particular, there is a lack of high-quality representative data to track the upstream factors that contribute to maternal morbidity and mortality, and to measure health outcomes beyond delivery into the postpartum year, when more than half of pregnancy-related deaths occur.
In collaboration with health departments in six states and New York City, our research team sought to demonstrate that addressing these critical data gaps is both useful and feasible. We conducted the Postpartum Assessment of Health Survey (PAHS), a representative multistate survey of postpartum people, allowing us to gather indicators on social determinants, unrealized and realized access to health care, and patient-reported health outcomes before, during, and after pregnancy. To do so, we built on the two prominent sources of information about birthing people in the US: birth certificates and the CDC Pregnancy Risk Assessment Monitoring System (PRAMS). PRAMS is a partnership between the CDC and state and city health departments that draws on Vital Statistics birth certificate data to form a state-representative sample of people who recently had a birth. PRAMS is typically completed from 2-4 months postpartum and asks several questions about pregnancy, childbirth, and newborn health. Questions are standardized across states, allowing for state-by-state comparisons, but states are allowed to add modules. PRAMS is a critical source of data for state policymakers and also generates hundreds of peer-reviewed research publications annually. Unfortunately, PRAMS is limited to the early postpartum period and asks few questions about postpartum health care and health outcomes, limiting both research and policy efforts related to the full postpartum period. Only a few state-specific efforts have collected postpartum health measures 1-2 years after birth (e.g., the California Listening to Mothers Survey, Colorado Health eMoms), but these initiatives have been limited in scope, representative of only single states or years, and vulnerable to funding cuts.
Similar to state-specific efforts, we built on the well-established PRAMS infrastructure to conduct a representative, multistate postpartum survey with individual-level data linkages to PRAMS and birth certificate variables. In collaboration with our 6 partner states (Kansas, Michigan, New Jersey, Pennsylvania, Virginia, and Utah) and New York City, we included opt-out cards in the standard PRAMS survey mailing for 2020 births, asking respondents to provide us an email address for follow-up and allowing those who did not want to be contacted at 12 months postpartum to decline. We found that birthing people are willing to complete a survey about their postpartum experiences. Over 70% of respondents opted in to be recontacted for PAHS and 76% responded to the PAHS survey, which was administered online or by telephone, either in English or Spanish. We developed a weighting strategy that applied further adjustments to the CDC PRAMS analytic weights to account for PAHS opt-out and non-response, allowing our data to be representative of births in each state and city.
The White House Maternal Health Blueprint, championed by US Vice President Kamala Harris, recently called for modernizing PRAMS by adding questions about social determinants, medical mistreatment, everyday discrimination, and postpartum depression (among others).2 The PAHS covered these topics as well as ones on health insurance, health care access, use, affordability and unmet needs, substance use, family leave, child care, and experiences with Covid-19. The survey also included several questions related to the social determinants of health, such as housing stability, food insecurity, social support, and intimate partner violence. Importantly, we assess postpartum health and mental health, as well as a respondent’s awareness of postpartum symptoms that could signal a serious issue. The prevalence of missing questions, even sensitive questions about intimate partner violence or substance use, was very low. Similar to PRAMS, we offered states the opportunity to add up to 10 customized questions to the survey; housing quality, telehealth preferences, neighborhood safety, and child outcomes were popular choices.
Findings from the PAHS study, including analyses published this month in Milbank Quarterly, demonstrate the value of representative surveillance data on the full postpartum period to target maternal health policies. In our Milbank Quarterly article, we examine the impact of the costs of childbirth and postpartum health care on family finances. We observed high levels of financial exposure related to childbirth that persisted into the postpartum year, with significant differences by health insurance type. Over half of people with commercial insurance at birth spent more than $1,000 out-of-pocket on childbirth and nearly 40% reported being somewhat or very worried about paying health care bills. Lower income people with commercially insured births reported particularly high financial strain; nearly half still owed money for childbirth costs, 16% had not made any payments at 12 months postpartum, and 20% had medical debt in collection. Overall, we found that Medicaid insurance was financially protective for birthing families, relative to commercial insurance, which is consistent with prior work. However, even very minimal cost-sharing was associated with outstanding medical debt at 12 months postpartum, with 1 in 4 Medicaid enrollees not yet having made any payments.
In a separate paper examining differences by type of coverage at birth,3 Medicaid or commercial insurance, we found that 1 in 5 birthing people reported delaying or forgoing care in the postpartum year, which was similar for both groups. However, people with Medicaid births had lower rates of postpartum visit attendance and lower use of all types of care except emergency departments. This disparity was even more pronounced among non-Hispanic Black and Hispanic respondents. Medicaid enrollees reported significantly higher rates of social risk factors, such as intimate partner violence, unstable housing, food insecurity, and financial strain. A PAHS analysis focused on perinatal mood and anxiety disorder (PMAD) found that, while there were no significant differences in diagnosis by race or ethnicity, respondents identifying as Asian, Native Hawaiian or Pacific Islander, Southwest Asian, Middle Eastern, or North African, Hispanic, and non-Hispanic Black were significantly less likely to receive mental health care.4 A PAHS paper found that 13.4% of birthing people experienced mistreatment from a health care provider while giving birth, with the most common form of mistreatment being “ignored, refused request for help, or failed to respond in a timely manner.” Several maternal socio-demographic risk factors were associated with increased odds of experiencing childbirth mistreatment.5
These findings are timely because, as of November 2023, 41 states including DC had adopted a new federal option to extend pregnancy Medicaid, which covers 4 in 10 births, from 6 weeks to 12 months of postpartum coverage.6 States also have expanded access to telehealth, mandated implicit bias training for providers, and incentivized use of doulas and midwives. Understanding which of these strategies may be making a difference would allow states to learn from one another and prioritize among competing policy options.7
Participating study sites have agreed to repeat the PAHS study with 2024 births, which has received funding from the National Institute on Minority Health and Health Disparities. This will be an important opportunity to evaluate postpartum health beyond the early Covid-19 context and understand the impacts of state Medicaid postpartum extensions. However, ultimately, we argue this data could and should be supported by the federal government and collected nationally through the existing PRAMS funding and implementation infrastructure. The PAHS study demonstrates that birthing people are willing to participate in a postpartum survey and that states and policymakers are interested in using the data to improve targeted efforts to address disparities and increasing rates of maternal mortality and morbidity. The PAHS study demonstrates this could be feasibly done in the form of a PRAMS follow-up at 12 months postpartum with the additional benefit of creating a dataset that captures the birthing experience from preconception to the full year postpartum. In addition to ongoing efforts by Health & Human Services and the CDC to link PRAMS to Medicaid and hospital discharge data,8 we believe this would be a powerful new tool for understanding and intervening in the maternal health crisis.
Conflict of Interest Disclosures: Dr. Allen and Dr. Daw received funding from Columbia World Projects and the National Institute on Minority Health and Health Disparities for the Postpartum Assessment of Health Survey (PAHS).
Additional Information: Dr. Allen is currently a Commissioner on the Medicaid and CHIP Payment and Access Commission (MACPAC).
Heidi Allen, PhD, MSW, is an associate professor at Columbia University School of Social Work. She studies the impact of social policies, like Medicaid–America’s health insurance for the poor–on health and financial well-being. She is a former emergency department social worker and spent several years in state health policy, where she focused on health system redesign and public health insurance expansions. In 2014-2015, she was an American Political Science Association Congressional Fellow in Health & Aging Policy. She was a speaker at TEDMED on the cost of being uninsured in America. Allen was recently honored by the Society for Social Work and Research with a 2019 Social Policy Researcher Award. She is currently involved in a number of research projects focused on social policy at the intersection of health and poverty.
