Reducing decisional conflict in decisions about prenatal genetic testing: the impact of a dyadic intervention at the start of prenatal care.

OBJECTIVES: Decisional conflict and regret about prenatal genetic screening and diagnostic tests may have important consequences in the current pregnancy and for future reproductive decisions. Identifying mechanisms that reduce conflict associated with the decision to use or decline these options is necessary for optimal patient counseling. METHODS: We conducted a cluster-randomized controlled trial of a shared decision-making tool (NEST) at the beginning of prenatal care. Enrolled patients completed follow-up surveys at the time of testing (QTT) and in the second-third trimester (QFF), including the Decision Conflict Scale (DCS). Total DCS scores were analyzed using a multivariate linear mixed-effect model. RESULTS: Of the total number of participants (n=502) enrolled, 449 completed the QTT and QFF surveys. The mean age of participants was 31.6±3.8, with most parous at the time of study participation (n=321; 71.7 %). Both the NEST (the intervention) and control groups had lower median total DCS scores at QFF (NEST 13.3 [1.7, 25.0] vs. control 16.7 [1.7, 25.0]; p=0.24) compared to QTT (NEST 20.8 [5.0, 25.0] vs. control 18.3 [3.3, 26.7]; p=0.89). Participants exposed to NEST had lower decisional conflict at QFF compared to control (ß -3.889; [CI -7.341, -0.437]; p=0.027). CONCLUSIONS: Using a shared decision-making tool at the start of prenatal care decreased decisional conflict regarding prenatal genetic testing. Such interventions have the potential to provide an important form of decision-making support for patients facing the unique type of complex and preference-based choices about the use of prenatal genetic tests.

Periviable Decision-Making in a New Era of Parentage: Ethical and Legal Considerations and Provider Perspectives on Shared Decision-making in Diverse Family Structures.

OBJECTIVE: To explore providers' perspectives about decisional authority, conflict resolution, and diverse family structures within the context of periviable delivery (eg, between 22 and 25 weeks of gestation), with the ultimate goal of helping practitioners support, engage, and navigate conflict with parents facing periviable delivery. STUDY DESIGN: Qualitative interviews with 30 neonatologists and obstetricians sought opinions about whether and how a pregnant person's partner should be involved in making periviable treatment decisions and how health care teams should proceed when parents do not agree on a treatment plan. Physicians were asked to consider whether their opinions changed under different scenarios involving marriage, biological relationship, adoption, and surrogacy. RESULTS: Interviews revealed 4 main themes corresponding to providers' perspectives regarding partner involvement and decisional authority: providers care; involvement matters; mom is the priority; and uncertainty and guidance needed. Unique themes arose when discussing diverse family structures. CONCLUSIONS: Shared decision making is optimal in the setting of periviable delivery, where decisions are both preference sensitive and value laden. Our interviews suggest that incorporating the dynamics and impact of partners' involvement in periviable resuscitation decision-making may facilitate more shared, equitable, and high-quality decision-making tailored to the needs of both pregnant people and their partners.

Coverage Effects of the ACA's Medicaid Expansion on Adult Reproductive-Aged Women, Postpartum Mothers, and Mothers with Older Children.

OBJECTIVES: We estimate the effect of the Affordable Care Act's (ACA) Medicaid expansions on Medicaid coverage of reproductive-aged women at varying childbearing stages. METHODS: Using data from the American Community Survey (ACS) (n = 1,977,098) and a difference-in-differences approach, we compare Medicaid coverage among low-income adult women without children, postpartum mothers, and mothers of children older than one year in expansion states to non-expansion states, before and after the expansions. RESULTS: The ACA's Medicaid expansion increased Medicaid coverage among adult women with incomes between 101 and 200% of the federal poverty line (FPL) without children by 10.7 percentage points (54 percent, p < 0.01). Coverage of mothers with children older than one year increased by 9.5 percentage points (34 percent, p < 0.01). Coverage of mothers with infants rose by 7.9 percentage points (21 percent, p < 0.01). CONCLUSIONS FOR PRACTICE: Within the population of adult reproductive-aged women, we find a "fanning out" of effects from the ACA's Medicaid expansions. Childless women experience the largest gains in coverage while mothers of infants experience the smallest gains; mothers of children greater than one year old fall in the middle. These results are consistent with ACA gains being the smallest among the groups least targeted by the ACA, but also show substantial gains (one fifth) even among postpartum mothers.

COVID-19 Among African Americans: An Action Plan for Mitigating Disparities.

As the COVID-19 pandemic has unfolded across the United States, troubling disparities in mortality have emerged between different racial groups, particularly African Americans and Whites. Media reports, a growing body of COVID-19-related literature, and long-standing knowledge of structural racism and its myriad effects on the African American community provide important lenses for understanding and addressing these disparities.However, troubling gaps in knowledge remain, as does a need to act. Using the best available evidence, we present risk- and place-based recommendations for how to effectively address these disparities in the areas of data collection, COVID-19 exposure and testing, health systems collaboration, human capital repurposing, and scarce resource allocation.Our recommendations are supported by an analysis of relevant bioethical principles and public health practices. Additionally, we provide information on the efforts of Chicago, Illinois' mayoral Racial Equity Rapid Response Team to reduce these disparities in a major urban US setting.

Incorporating Health Equity Into COVID-19 Reopening Plans: Policy Experimentation in California.

California has focused on health equity in the state's COVID-19 reopening plan. The Blueprint for a Safer Economy assigns each of California's 58 counties into 1 of 4 tiers based on 2 metrics: test positivity rate and adjusted case rate. To advance to the next less-restrictive tier, counties must meet that tier's test positivity and adjusted case rate thresholds. In addition, counties must have a plan for targeted investments within disadvantaged communities, and counties with more than 106 000 residents must meet an equity metric. California's explicit incorporation of health equity into its reopening plan underscores the interrelated fate of its residents during the COVID-19 pandemic and creates incentives for action. This article evaluates the benefits and challenges of this novel health equity focus, and outlines recommendations for other US states to address disparities in their reopening plans.

The impact of the emergence of COVID-19 on women's prenatal genetic testing decisions.

OBJECTIVE: We conducted a study to examine the impact of COVID on patients' access and utilization of prenatal genetic screens and diagnostic tests at the onset of the COVID-19 pandemic in the United States. METHODS: We conducted telephone interviews with 40 patients to examine how the pandemic affected prenatal genetic screening and diagnostic testing decisions during the initial months of the pandemic in the United States. An interview guide queried experiences with the ability to access information about prenatal genetic testing options and to utilize the tests when desired. Audio recordings were transcribed and coded using NVivo 12. Analysis was conducted using Grounded Theory. RESULTS: The pandemic did not alter most participants' decisions to undergo prenatal genetic testing. Yet, it did impact how participants viewed the risks and benefits of testing and timing of testing. There was heightened anxiety among those who underwent testing, stemming from the risk of viral exposure and the fear of being alone if pregnancy loss or fetal abnormality was identified at the time of an ultrasound-based procedure. CONCLUSION: The pandemic may impact patients' access and utilization of prenatal genetic tests. More research is needed to determine how best to meet pregnant patients' decision-making needs during this time.

Decision-making for prenatal genetic screening: how will pregnant women navigate a growing number of aneuploidy and carrier screening options?

BACKGROUND: Prenatal genetic screens, including carrier screening (CS) and aneuploidy screening (AS), comprise an important component of reproductive healthcare delivery. Clinical practice guidelines emphasize the importance of informed decision-making and patient's preferences regarding the use of these screens. Yet, it is unclear how to achieve this ideal as prenatal genetic screening options rapidly become more complex and increasingly available to patients. With increased complexity and availability of reproductive testing options, decision-support strategies are critical to prepare patients to consider AS and/or CS. METHODS: A self-administered survey evaluated knowledge and decision-making preferences for expanded carrier (CS) and aneuploidy (AS) prenatal screening. The survey was administered to participants before their first prenatal visit to assess baseline decision-making needs and preference at the initiation of prenatal care. Analysis was approached as a descriptive process. RESULTS: Participants had similar familiarity with the concepts associated with AS compared to CS; mean knowledge scores for CS was 0.59 [possible range 0.00 to 1.00] and 0.55 for AS. Participants reported preferences to learn about a range of conditions, including those with severe or mild impact, childhood-onset, and adult-onset. Decision-making preference with respect to learning about the associated disease phenotypes for the contained on AS and CS panel shifted with the complexity of the panel, with a greater preference to learn about conditions post-test compared pre-test education as panels increased from 5 to 100 conditions. CONCLUSION: Patients' baseline knowledge of prenatal genetic screens coupled with evolving decision-making preferences presents challenges for the delivery of prenatal genetic screens. This calls for the development and implementation of innovative approaches to support pregnant patients' decision-making commensurate with advances in prenatal genomics.

Ethical Cultures in Perinatal Care: Do They Exist? Correlation of Provider Attitudes with Periviability Practices at Six Centers.

OBJECTIVE: This study aimed to compare attitudes of providers regarding perinatal management and outcomes for periviable newborns of caregivers at centers with higher resuscitation (HR) and lower resuscitation (LR) rates in the delivery room. STUDY DESIGN: All obstetric and neonatal clinical providers at six U.S. sites were invited to complete an anonymous online survey. Survey responses were compared with clinical data collected from a previous retrospective study comparing centers' rates of planned resuscitation. Responses were analyzed by multivariable logistic and linear regression to assess how HR versus LR center respondents differed in management preferences and outcome predictions. RESULTS: Paradoxically, HR versus LR respondents, when adjusting for other variables, were less likely to respond that interventions such as antenatal steroids (odds ratio: 0.61, 95% confidence interval [CI]: 0.42-0.88, p < 0.009) and resuscitation (OR: 0.59, 95% CI: 0.44-0.78, p < 0.001) should be given at 22 weeks. HR versus LR respondents also reported lower likelihood of survival and acceptable quality of life (OR: 0.7, 95% CI: 0.53-0.93, p = 0.012) at 23 weeks. CONCLUSION: Despite higher rates of planned resuscitation at 22 and 23 weeks, steroid usage and survival rates did not differ between HR and LR sites. In this subsequent survey, respondents from HR centers had a less favorable outlook on interventions for these newborns than those at LR centers, suggesting that instead of driving practices, attitudes may be more closely associated with experiences of clinical outcomes.

Making the most of the first prenatal visit: The challenge of expanding prenatal genetic testing options and limited clinical encounter time.

OBJECTIVE: Advances in prenatal genetics place additional challenges as patients must receive information about a growing array of screening and testing options. This raises concerns about how to achieve a shared decision-making process that prepares patients to make an informed decision about their choices about prenatal genetic screening and testing options, calling for a reconsideration of how healthcare providers approach the first prenatal visit. METHODS: We conducted interviews with 40 pregnant women to identify components of decision-making regarding prenatal genetic screens and tests at this visit. Analysis was approached using grounded theory. RESULTS: Participants brought distinct notions of risk to the visit, including skewed perceptions of baseline risk for a fetal genetic condition and the implications of screening and testing. Participants were very concerned about financial considerations associated with these options, ranking out-of-pocket costs on par with medical considerations. Participants noted diverging priorities at the first visit from those of their healthcare provider, leading to barriers to shared decision-making regarding screening and testing during this visit. CONCLUSION: Research is needed to determine how to restructure the initiation of prenatal care in a way that best positions patients to make informed decisions about prenatal genetic screens and tests.

Outcomes of a two-visit protocol for long acting reversible contraception for adolescents and young adults.

OBJECTIVES: To examine outcomes of a 2-visit protocol for placement of intrauterine or subdermal contraception. STUDY DESIGN: We identified all women ages 15 to 27 who received an order for an intrauterine or subdermal contraceptive between January 2014-December 2016. We examined time from order to contraceptive placement and reasons for incomplete orders. RESULTS: We identified 1,192 unique patients who received 1,323 orders for intrauterine or subdermal contraceptives; 68% were completed at a second visit. The median time from order to placement was 22 days (interquartile range = 15-35). Of incomplete orders, 41% were related to logistics of a subsequent visit. Twenty-eight percent of patients had a subsequent pregnancy within the study period. CONCLUSIONS: Efforts to provide same-day access for all contraceptive methods are needed.

Overview of US Maternal Mortality Policy.

The United States maternal mortality rate has been rising for many years putting the US out of step with peer countries. There are many complex reasons for the rise in maternal deaths and recent data has demonstrated that there is a disproportionate risk for women of color. This article provides an overview of current policy and policy issues aimed at improving the maternal mortality rate in the United States.