Significant differences in health status among women, infants, and children and inadequate response to the role of early life stressors on life course health indicate a need for an important transformation of the U.S. health care system and its delivery of preconception, prenatal, postpartum, and pediatric care, which are the focus of this chapter (see Box 5-1 for an overview of the chapter). Changes are urgently needed to better address health disparities, including those by race/ethnicity and socioeconomic status (SES) (see Chapter 1 for a more detailed discussion of disparities). For example, the most recent statistics on maternal and infant mortality and other birth outcomes (see Box 5-2) highlight significant disparities and demonstrate the urgency of changes to the health care system to more rapidly and effectively address and reverse concerning trends. As the evidence in this report demonstrates, much chronic disease and disability among adults has origins in infancy and childhood. Furthermore, changing needs of the population, with growing diversity and greater understanding of the health impacts of social determinants of health (SDOH), also signal the need for major changes throughout the health care system.
As detailed in this chapter, the current health care system often delivers limited, episodic, inequitable, and fragmented services. It focuses on clinical medical care, which recognizes the myriad of social factors that affect health outcomes but often addresses such factors in fragmented and variable ways. The health care system serves as one platform, along
with public health and other sectors, to address the social determinants that underlie many health inequities. To better address inequities, it is necessary to transform the organization, delivery, and financing of health care to incorporate community-focused teams and integration across multiple sectors to address the SDOH, poverty, mental and behavioral health (MBH), chronic disease, disparities, adversity, and family well-being. Achieving these goals will require ensuring access to care, focusing and improving quality of care, changing the organization and financing of health care, and strengthening the content of health care.
Based on available evidence and existing resources, the committee identified three domains as important for focusing on preconception, prenatal, and early childhood interventions: health care systems and services (Chapter 5), healthy living conditions (Chapter 6), and early care and education (Chapter 7) (for the committee’s conceptual model, see Figure 1-9). This chapter focuses on health care systems and services,
including preventive care and clinical care delivery systems, and also emphasizes critical links and opportunities for alignment with other partners in the health care system and in other sectors in the community.
The health care sector is positioned to play a crucial role in advancing health equity by providing care and services during the preconception, prenatal, postpartum, and early childhood periods. Preconception, prenatal, and pediatric care provide a point of entry into the health care system for women and men, as well as children, especially those in the first few years of life. However, the current health care system organizational fragmentation and the episodic delivery of health care services, coupled with institutional and systemic disadvantage, have resulted in significant disparities in access to and use of health care services. Health care that is well organized, accessible over time, high quality, universally available, and effectively integrated for all people could provide continuous access to a wide variety of resources and services and decrease disparities in
use of health care services. Given that recognizing risk factors (biological, social, and environmental) as early as possible is fundamental to addressing health inequities, universal access to health care services is a critical component to decreasing and eliminating health inequities (Veugelers and Yip, 2003).
Although health care plays an integral role, the health care sector alone cannot meaningfully address health inequities, nor is it the primary actor or leader. Cross-sectoral and multidisciplinary collaboration is essential for decreasing health inequities. As discussed in Chapter 1, the United States spends more on health care than any other country, yet has some of the worst outcomes and gravest disparities. Despite significant improvements in the last century, troubling trends have persisted and worsened in the current century (e.g., life expectancy has decreased, and maternal mortality rates have increased [see Box 5-2]) (CDC, 2019c; Murphy et al., 2018). Although children and youth represented about 45 percent of the Medicaid population in 2013, they received only about 19 percent of Medicaid expenditures (MACPAC, 2018). In addition, about 95 percent of U.S. spending on health is related to treatment and medical services; only about 5 percent is allocated to population-level health improvement and prevention (McGinnis et al., 2002). The United States spends the highest percentage of its gross domestic product on health care services among all nations but has poor health outcomes in many areas, including neonatal and maternal mortality, deaths from injuries, and rates of substance use. Improving health outcomes requires more rapid learning regarding interventions that work and those that do not, focusing investment in effective interventions and their deployment, and more equitable allocation of resources to other sectors outside of health care. As Steuerle and Isaacs (2014) document, federal spending on programs to support children and families has faced immense budgetary pressures as health care spending has increased.
The committee embraced the life course approach, which emphasizes the impact of an individual’s experiences throughout a lifetime—and across generations—on health outcomes (see Chapter 3). Given the multigenerational impacts of toxic stress, food and housing instability, chronic disease, and parental ill health on the health of children, all family members need access to health care services across the life course. Thus, this chapter highlights the many ways in which our current system represents a patchwork of services offered at different times in life (e.g., little or no continuity, intermittent insurance coverage, poor access to providers, eligibility for services for short periods of time) and how U.S. health care needs to be redesigned and rebuilt on a firmer foundation of care across the life course with added boosters during life junctures most critical to a child’s health. This chapter covers health care services delivered and
received during the preconception, prenatal, postpartum, and early childhood periods—junctures at which well-timed services can boost the odds for good health across the life course.
This chapter generally focuses on health care provided by physicians, although there are many other practitioners that play an important role in the health care system during these life periods, such as nurses, nurse practitioners, nurse-midwives, doulas, social workers, specialized therapists, and mental health practitioners. However, given the scope of this report, the committee could not cover all of these in great detail. In addition, there are a number of forthcoming National Academies reports on topics related to this chapter, including the roles of other important practitioners. These include studies on the future of nursing 2020–2030, which has a focus on reducing health disparities and producing a culture of health1; assessing health outcomes by birth settings2; and integrating social needs care into the delivery of health care to improve the nation’s health.3 Finally, the 2019 National Academies report The Promise of Adolescence: Realizing Opportunity for All Youth (NASEM, 2019) covers topics not included here, such as sexual and reproductive health care for adolescents—including unintended pregnancy.
The health care system as a whole is robust and frequently interacts with children and their families by providing a nearly universal touchpoint with all women and children from the prenatal period to age 3, making it an important system through which to address health inequities. However, it is important to note that the health care system is not the main vehicle through which change should occur to address the SDOH, nor is it where additional funds should be funneled to do so. Rather, the health care system needs to be better leveraged to not only provide medical care but also address the SDOH (including barriers to access other than health insurance, such as lack of or inadequate transportation to medical visits, cost-sharing, and lack of culturally competent services) (Woolf, 2019). However, as noted above and described in detail below, the health care system does need to change to more systematically address the upstream causes of poor health and health inequities. To do so, the health care sector needs to engage and partner with other sectors to actively address the SDOH and find common solutions to meet the needs
1 For more information, see http://www.nationalacademies.org/hmd/Activities/Workforce/futureofnursing2030.aspx (accessed April 5, 2019).
2 For more information, see https://sites.nationalacademies.org/DBASSE/BCYF/Research_Issues_in_the_Assessment_of_Birth_Settings/index.htm (accessed April 5, 2019).
3 For more information, see http://nationalacademies.org/hmd/activities/healthservices/integratingsocialneedscareintothedeliveryofhealthcaretoimprovethenationshealth.aspx (accessed April 5, 2019).
This chapter includes an introduction to the history and current content of preconception, prenatal, postpartum, and pediatric health care and sections describing efforts to improve access, quality, and innovative delivery/financing of better health care during these critical and sensitive periods of life. As noted above, the life course perspective illustrates that health care from preconception through early childhood is a continuum of care that needs to take place across the life-span and take into account intergenerational effects. Thus, as this chapter discusses, an integrated health care system, which will require addressing a multitude of structural, professional, practical, and cultural barriers, is necessary to accelerate improvement in health care services, with the ultimate goal of improving health outcomes and decreasing health inequities.
A primary goal of preconception care is to improve the health of men and women during their reproductive years, especially shortly before conceiving a child. The Centers for Disease Control and Prevention (CDC) defines preconception care as “a set of interventions that aim to identify and modify biomedical, behavioral, and social risks to a woman’s health or pregnancy outcome through prevention and management” (Johnson et al., 2006). As discussed in Chapter 2, preconception health is important not only for pregnancy outcomes but also for the lifelong health of children and even the health of the next generation (The Lancet, 2018). Disparities in preconception health can thus set up intergenerational transmission of health disparities. Using data from the Behavioral Risk Factor Surveillance System, 2013–2015, and Pregnancy Risk Assessment Monitoring System, 2013–2014, Robbins et al. (2018) found significant disparities in nine preconception health indicators by race/ethnicity, age, and insurance status (see Tables 5-1 and 5-2). They found that among older women (35–44 years), non-Hispanic black women, uninsured women, and those residing in southern states, prevalence estimates of risk factor indicators were generally highest and prevalence estimates of health-promoting indicators were generally lowest.
Advancing health equity in birth and child health outcomes begins with reducing preconception health disparities. For decades, preconception care has been proposed as a key population-level strategy for
TABLE 5-1 Prevalence of Preconception Health Indicators Among Nonpregnant Reproductive-Aged Women (18–44 years), by Age Group, Race/Ethnicity, and Insurance—Behavioral Risk Factor Surveillance System, United States, 2013–2015a
|Characteristic||Depressionb (2014–2015)||Diabetesb,c (2014–2015)||Hypertensionb,c,d (2013, 2015)||Current Cigarette Smokinge (2014–2015)||Normal Weightf (2014–2015)||Recommended Physical Activityd,g (2013, 2015)|
|% (95% CI)||% (95% CI)||% (95% CI)||% (95% CI)||% (95% CI)||% (95% CI)|
|Age group (years)h|
|18–24||19.2 (18.4–20.1)||1.0 (0.8–1.2)||5.0 (4.5–5.4)||13.4 (12.7–14.1)||57.0 (55.9–58.2)||53.3 (52.1–54.4)|
|25–34||22.6 (22.0–23.3)||2.4 (2.1–2.7)||9.2 (8.7–9.7)||19.5 (18.9–20.1)||42.7 (41.8–43.5)||49.7 (48.9–50.6)|
|35–44||23.1 (22.5–23.7)||5.3 (4.9–5.6)||17.0 (16.4–17.6)||16.8 (16.3–17.4)||37.9 (37.2–38.7)||49.0 (48.2–49.8)|
|White||27.0 (26.5–27.6)||2.6 (2.4–2.8)||10.2 (9.8–10.5)||21.1 (20.6–21.6)||49.0 (48.3–49.6)||53.8 (53.2–54.4)|
|Black||16.2 (15.1–17.2)||4.5 (4.0–5.1)||18.3 (17.3–19.3)||15.6 (14.5–16.7)||30.0 (28.6–31.5)||42.8 (41.3–44.3)|
|Hispanic||15.5 (14.6–16.4)||3.6 (3.2–4.1)||9.5 (8.7–10.3)||8.9 (8.2–9.6)||37.2 (35.9–38.6)||46.0 (44.6–47.4)|
|Other||14.8 (13.6–16.1)||2.4 (1.9–2.8)||8.0 (7.1–9.0)||11.3 (10.3–12.4)||57.6 (55.6–59.6)||50.3 (48.2–52.4)|
|Yes||22.3 (21.8–22.7)||3.1 (2.9–3.2)||10.8 (10.5–11.2)||16.1 (15.7–16.5)||46.1 (45.6–46.7)||51.8 (51.2–52.4)|
|No||20.3 (19.2–21.3)||3.2 (2.8–3.6)||11.5 (10.8–12.2)||21.0 (20.0–22.0)||38.6 (37.2–40.0)||44.0 (42.7–45.3)|
|Overall||21.9 (21.5–22.3)||3.1 (2.9–3.2)||10.9 (10.6–11.2)||16.9 (16.5–17.2)||44.9 (44.4–45.5)||50.4 (49.9–50.9)|
NOTE: CI = confidence interval.
a For indicators relying on annual standard core questions (i.e., questions that are asked annually by all states), estimates are based on 2014–2015 data. For indicators that are based on the biannual rotating core survey, CDC combined years 2013 and 2015; includes 50 U.S. states and the District of Columbia. Data self-reported by women aged 18–44 years.
b Self-report of ever having been told by a health care provider that they have the condition.
c Excluded if occurring only during pregnancy.
d Hypertension and physical activity questions are included as part of the biannual rotating core that is administered in odd years; therefore, 2013 and 2015 data were used.
e Defined as smoking 100 or more cigarettes in a lifetime and currently smoking cigarettes every day or some days at the time of the interview.
g Participation in enough moderate and/or vigorous physical activity in a usual week was defined as meeting the U.S. Department of Health and Human Services recommended levels of aerobic physical activity. Respondents were classified as meeting recommendations if they reported at least 150 minutes per week of moderate-intensity activity, at least 75 minutes per week of vigorous-intensity activity, or a combination of moderate-intensity and vigorous-intensity activity (where vigorous activity minutes are multiplied by two) totaling at least 150 minutes per week.
h In chi-square tests, differences by age and by race/ethnicity are significant at p < 0.05 for all indicators.
i Defined as having any kind of health care coverage, including prepaid plans such as health maintenance organizations or government plans such as Medicare or Indian Health Service.
j In chi-square tests, differences by insurance are significant at p < 0.05 for all indicators except diabetes and hypertension.
SOURCE: Robbins et al., 2018.
TABLE 5-2 Prevalence of Preconception Health Indicators Among Reproductive-Aged Women (aged 18–44 years) with a Recent Live Birth, by Age Group, Race/Ethnicity, and Insurance—Pregnancy Risk Assessment Monitoring System, United States, 2013–2014a
|Characteristic||Recent Unwanted Pregnancyb||Pregnancy Multivitamin Usec||Postpartum Use of Effective Contraceptiond|
|% (95% CI)||% (95% CI)||% (95% CI)|
|Age group (years)e|
|18–24||6.4 (5.8–7.1)||17.9 (17.0–18.9)||64.9 (63.6–66.2)|
|25–34||4.9 (4.6–5.3)||37.4 (36.6–38.2)||55.1 (54.3–55.9)|
|35–44||9.8 (8.9–10.8)||45.4 (43.8–46.9)||50.6 (49.0–52.3)|
|White||5.0 (4.6–5.4)||37.8 (37.1–38.6)||56.8 (55.9–57.6)|
|Black||11.6 (10.4–12.8)||21.6 (20.2–23.2)||64.9 (63.1–66.7)|
|Hispanic||6.4 (5.6–7.3)||26.2 (24.8–27.7)||59.3 (57.5–61.0)|
|Other||6.0 (5.2–6.8)||31.7 (30.1–33.4)||44.6 (42.8–46.5)|
|Yes||5.8 (5.5–6.1)||37.4 (36.7–38.1)||56.7 (56.0–57.4)|
|No||7.3 (6.6–8.1)||17.1 (16.0–18.2)||57.9 (56.4–59.5)|
|Overall||6.1 (5.8–6.4)||33.6 (33.0–34.2)||56.9 (56.3–57.6)|
NOTE: CI = confidence interval.
a Includes Alabama, Alaska, Arkansas, Colorado, Delaware, Georgia, Hawaii, Illinois, Iowa, Maine, Maryland, Massachusetts, Michigan, Minnesota, Missouri, Nebraska, New Hampshire, New Jersey, New Mexico, New York, New York City, Oklahoma, Oregon, Pennsylvania, Rhode Island, Tennessee, Utah, Vermont, Washington, West Virginia, Wisconsin, and Wyoming. Data self-reported by women aged 18–44 years who recently had a live birth.
b Defined as a pregnancy among women who reported that just before they got pregnant with their most recent live-born infant, they did not want to be pregnant then or at any time in the future.
c Defined as taking a multivitamin, prenatal vitamin, or folic acid supplement every day of the month before pregnancy.
d Includes male or female sterilization, implant, intrauterine device, injectable, pill, patch, or ring.
e In chi-square tests, differences by age and by race/ethnicity are significant at p < 0.05 for all indicators.
f Defined as having private, Medicaid, other government plans such as TRICARE, military health care, Indian Health Service or tribal, and other kinds of health insurance during the month before pregnancy.
g In chi-square tests, differences by insurance are significant at p < 0.05 for all indicators except postpartum use of effective contraception.
SOURCE: Robbins et al., 2018.
improving birth outcomes. Clinical recommendations have been developed regarding the key components of preconception care, which include addressing primarily undiagnosed, untreated, or poorly controlled medical conditions; immunization history; medication and radiation exposure in early pregnancy; nutritional issues; family history and genetic risk; tobacco and substance use and other high-risk behaviors; occupational and environmental exposures; family planning and reproduction life plans; social issues; and mental health issues (Jack et al., 2008). Men could also benefit from preconception care, although the content of care is less well defined for them (Frey et al., 2008).
The evidence base supporting a range of services for preconception care as critical to child health has been well documented and includes folic acid supplementation; appropriate management of hyperglycemia; rubella, influenza, and hepatitis vaccination; a low phenylalanine diet; and provision of antiretroviral medications to reduce the risk for mother-to-child HIV transmission (Johnson et al., 2006; Korenbrot et al., 2002). Yet, several recent reviews regarding the most effective health care structures to ensure translating this science into action have found mixed results. Burgess et al. reviewed nine studies and found that fertility intention screening was associated with improved knowledge related to healthier pregnancy but not increased provision of new contraception services for those not desiring pregnancy (Burgess et al., 2018). Lassi et al. (2014) reviewed 161 studies and found evidence of effectiveness for preconception care in improving outcomes for women with diabetes, epilepsy, phenylketonuria (PKU), and depression. Hemsing et al. (2017) reviewed 29 preconception interventions and found that the majority of interventions offered assessment or screening followed by brief intervention or counseling. Overall, these interventions demonstrated improvements in at least some of the outcomes measured (Hemsing et al., 2017). However, several other systematic reviews failed to find conclusive evidence of improved pregnancy outcomes associated with the following types of preconception care: routine prepregnancy health promotion (Whitworth and Dowswell, 2009), genetic risk assessment (Hussein et al., 2018), preconception care for diabetic women (Tieu et al., 2017b), interconception care for women with a history of gestational diabetes (Tieu et al., 2017a), preconception health and programs for women who are overweight or obese (Opray et al., 2015), preconception lifestyle advice for people with subfertility (Anderson et al., 2010), and preconception care in the primary care setting (Hussein et al., 2016). This could be largely due to a lack of randomized controlled trials (RCTs) or poor study quality, but this may also reflect the limits of preconception care services as they are currently conceived, organized, and delivered.
Currently, the content of preconception care is too ill defined and limited, its access is too restricted and episodic, its quality is too
disparate and inequitable, and its organization and delivery are too fragmented and siloed to fully deliver on its promise as an intergenerational equalizer of population health (Verbiest et al., 2016). The timing of preconception care has been identified as a major limitation contributing to the health care system’s failures in achieving optimal delivery of preconception care. Preconception care is commonly regarded as a single prepregnancy checkup a few months before the couple attempts to conceive. The timing of such an approach, however, could miss nearly half of all pregnancies, which are unplanned (Finer and Zolna, 2016), and approximately 37 percent of all births in the United States, which are unintended at the time of conception (Mosher et al., 2012). Moreover, such an approach may be appropriate to address certain risk factors (e.g., folic acid supplementation, low phenylalanine diet, or cessation of certain teratogenic exposures) but may be too late to address others. For example, preconception counseling 3 months before pregnancy may be timely to avoid ingesting methylmercury, which has a half-life of 50 days (CDC, 2016), but too late to reduce the bioaccumulation of dioxins and dioxin-like compounds (DLCs), which have a half-life of 7–8 years (IOM, 2003). DLCs are lipophilic and bioaccumulate in animal fat; hence, the Institute of Medicine recommended that girls and young women drink low-fat or skim milk instead of whole milk and eat foods lower in animal fat years before they become pregnant (IOM, 2003). Switching to low-fat milk and/or a low-fat diet a few months before pregnancy would do little to reduce fetal exposure to DLCs. Furthermore, to expect preconception care to reverse allostatic load (the cumulative physiological toll from chronic stress) in a single visit may be asking too much. Thus, rather than considering preconception care as a single prepregnancy checkup, it needs to be re-conceptualized, tested, and integrated into health care services delivered consistently, continuously, and comprehensively for women (and men) across the life course.
Another limit of preconception care, as commonly practiced, is its narrow clinical focus. While its benefits in reducing certain biomedical or behavioral risks (e.g., folate deficiency, PKU, smoking) have been well documented, these are often not the major drivers of disparities in birth and child health outcomes. Preconception care could have a greater impact in advancing health equity if it is better set up to optimize management of chronic conditions, such as hypertension, diabetes, and obesity, that disproportionately affect low-income women and women of color; yet, for many women, the lack of access to and the episodic nature of preconception care limit its effectiveness as a population-wide strategy for advancing equity in preconception health. Preconception care offers an important opportunity for addressing MBH issues, but in many underresourced communities, a positive screen is often not backed up by
available referral services, such as cognitive behavioral therapy, alcohol rehabilitation, tobacco cessation counseling and referral, substance use treatment, or trauma-informed care (TIC). Most importantly, preconception care is presently ill equipped to address many social determinants of preconception health, such as food insecurity, housing instability, occupational or environmental exposures, or intimate partner violence. This is not a flaw of preconception care per se but of the larger U.S. health care system, which is poorly designed to tackle the SDOH; nonetheless, preconception care represents an important missed opportunity for advancing health equity, with its prevailing narrow focus on fixing biomedical and behavioral risks.
The evidence base regarding the effectiveness of preconception care is also limited by the relative dearth of research on which preconception interventions succeed in advancing health equity in birth and child health outcomes. For example, despite increasing recognition of the health impact of maternal allostatic load on not only birth and child health outcomes but also the developmental origins of health and disease, there has been a paucity of intervention research on what can be done during preconception care to reduce maternal allostatic load. Similarly, little is known on how preconception care might reduce the risk of aberrant placentation, epigenetic reprogramming, and neuroendocrine, immune-inflammatory, and metabolic dysregulation, which could contribute to disparities in birth outcomes and lifelong health.
Approaches to incorporate reproductive life planning discussions into routine visits for women of child-bearing age (e.g., asking every woman of reproductive age at every routine visit whether she would like to become pregnant at some point and, if so, when that might be [Callegari et al., 2017])—have led to increased delivery of preconception care services prior to pregnancy. However, these strategies have been criticized for focusing too much on reproductive choice and not enough on reproductive justice. The maternalism inherent in the traditional concept of preconception care (as narrowly defined by the current health care system) has been criticized by some for promoting the trope of “women as reproductive vessels” (Waggoner, 2013). Others have argued that preconception care (and contraceptive care) is limited by a primary focus on changing individual behaviors instead of the historical and social contexts of those behaviors and on promoting reproductive choice instead of broader reproductive access, especially for communities of color. This reality gave rise to the reproductive justice movement in the 1990s, which focused on a woman’s right to have a child or not to have a child and explicitly recognized that, while pregnancy intention and choice are important, many women do not have the requisite resources to access the essential tools to control their own reproductive destiny. These include, but are not limited to, reliable
birth control, adoption, abortion, and paid maternity leave. Reproductive justice activists have maintained that
reproductive safety and dignity depended on having the resources to get good medical care and decent housing, to have a job that pays a living wage, to live without police harassment, to live free of racism in a physically healthy environment—all of these (and other) conditions of life were fundamental conditions for reproductive dignity and safety—reproductive justice—along with legal contraception and abortion. (Ross and Solinger, 2017, p. 56)
Pregnancy intention is key to promoting good maternal, neonatal, and childhood health outcomes (Hall et al., 2017), but the decision to have a child does not occur in a vacuum. It is rooted in the environmental, socioeconomic, and political world in which a woman and her family live. A discussion of preconception care is incomplete if it is not centered in the broader context of U.S. history, which included concerted efforts to encourage some women to reproduce while going to great lengths to make sure other women did not. Such distinctions were often based on race, class, and/or immigration status, with a paternalistic presumption that some women were inherently fit to be mothers while others were not. Notable examples of public policies influencing the reproductive status of women in this country include the eugenics movement, forced sterilization campaigns, and welfare programs penalizing women for having a man in the home or having children (Kluchin, 2009; Ross and Solinger, 2017; Stern, 2005). As an example, in the 1970s, many low-income women and women of color, including Puerto Rican, African American, Chicano, and American Indian/Alaska Native (AI/AN) women, experienced mass forced sterilization. AI/AN women suffered particularly serious abuse from federal policies that enabled AI/AN children to be taken from their families in addition to numerous violations of reproductive rights (Torpy, 2000). These examples underscore that there is much more at play than personal reproductive choice when a woman makes the decision of whether to have children and emphasize how the health care system can best support all women and families equitably in making this important decision.
Prenatal and Postpartum Care
For decades, the delivery of prenatal care has been a cornerstone of the U.S. strategy to reduce infant mortality and perinatal disparities (Alexander and Kotelchuck, 2001; Lu et al., 2003, 2010). The primary focus of prenatal care has shifted over time from focusing on medical intervention to providing more comprehensive intervention and prevention with public health approaches (Lu and Lu, 2008; Lu et al., 2010). Prenatal care originated from research conducted in early 20th-century England by John W. Ballantyne, who proposed that “to prevent fetal abnormalities
and reduce maternal, fetal, and neonatal deaths, medical supervision for pregnant women should be provided throughout pregnancy rather than only during labor” (Lu and Lu, 2008, p. 592). In the United States, prenatal care began with a program of nurse home visiting to pregnant women by Mrs. William Lowell Putnam at the Boston Lying-In Hospital in 1901, which led to the establishment of an outpatient clinic in 1911 that provided prenatal visits consisting of history and physical examination, blood pressure measurement, and urinalysis (Lu and Lu, 2008). From the beginning, the content of prenatal care was influenced by concerns about toxemia (preeclampsia), which was diagnosed by high blood pressure and excess protein in the urine. Such concerns also contributed to establishing the timing and frequency of prenatal visits (Lu and Lu, 2008).
Several studies (Eisner et al., 1979; Gortmaker, 1979; Greenberg, 1983; IOM, 1973; Taffel, 1978) published in the 1970s found a significant association between no prenatal care and the incidence of low birth weight (LBW), a leading cause of infant mortality and perinatal disparities. Citing these studies, an IOM report concluded that the “overwhelming weight of the evidence is that prenatal care reduces low birthweight” (IOM, 1985, p. 146) and promoted prenatal care as a key population-wide public health intervention for improving birth outcomes in the United States. In 1986, the U.S. Public Health Service assembled an expert panel to assess the content of prenatal care. In its 1989 report, the expert panel identified three basic components of prenatal care: (1) early and continuing risk assessment, (2) health promotion, and (3) medical and psychosocial interventions and follow-up (NIH, 1989). Soon thereafter, Congress enacted a series of legislative initiatives that incrementally expanded Medicaid eligibility to low-income pregnant women and children independent of their welfare status. Many states then further expanded Medicaid eligibility and streamlined the process of enrollment into prenatal care (Handler et al., 2011). Arguments for expansion of access to prenatal care were bolstered by cost-effectiveness analyses, which suggested that savings could be achieved by reducing LBW, though the cost savings may have been overstated (Huntington and Connell, 1994).
In part stemming from these national and state policies, the adoption of timely and adequate prenatal care has increased substantially over the past few decades (Kogan et al., 1998; Martin et al., 2002; Piper et al., 1994). This increase, however, did not lead to an immediate reduction in LBW or disparities in birth outcomes. While many reasons could have contributed to the persistent poor outcomes (Alexander and Slay, 2002), some began to question the effectiveness of prenatal care as a population-wide strategy for improving birth outcomes. Two reviews published in 1995 raised concerns regarding the validity of the evidence used to support the benefit of prenatal care (Alexander and Korenbrot, 1995; Fiscella, 1995). Citing problems with inconsistent results, insufficient adjustment for prematurity bias, and inadequate control for the effect of
critical confounders and potential selection bias in earlier studies, Fiscella concluded that “current evidence does not satisfy the criteria necessary to establish that prenatal care definitely improves birth outcomes” (Fiscella, 1995, p. 475). Alexander and Korenbrot (1995) also concluded from their systematic review that “[t]here is little done during the standard prenatal care visit that could be expected to reduce low birth weight” (Alexander and Korenbrot, 1995, p. 113). Lu et al. (2003) concluded from a review of the content of prenatal care in 2003 that neither preterm birth nor intrauterine growth restriction—the twin constituents of LBW—can be effectively prevented by prenatal care in its present form. They contended that “[p]reventing LBW will require reconceptualization of prenatal care as part of a longitudinally and contextually integrated strategy to promote optimal development of women’s reproductive health not only during pregnancy, but over the life course” (Lu et al., 2003, p. 362).
These critiques led to a dampening of enthusiasm for prenatal care and a search for alternative strategies, such as bolstering preconception care services, to improve birth and child health outcomes in the United States. It should be noted, however, that most extant studies examined prenatal care in a limited form, addressing primarily clinical risk factors for pregnancy complications rather than what truly matters to both maternal (and paternal) health and the developmental origins of the child’s future health. They also focused on a few birth outcomes rather than examining a broader array of health and developmental outcomes for children and families (Lu et al., 2010). While there is great evidence that pregnancy is a critical life event and a sensitive period for healthy child development, experts still disagree about how the health care system should effectively organize and deliver prenatal care.
Later in this chapter, the committee calls for a redesign of prenatal care to improve access, content, quality, delivery, and financing. Access can be improved with outreach, care coordination, and technology. Content could be expanded to include more detailed assessment, education, and management of psychosocial and environmental risks. Quality improvement efforts could address implicit bias and unequal treatment. Most importantly, this committee calls for a transformation of the organization and delivery of prenatal care to achieve greater vertical, horizontal, and longitudinal integration, including greater linkages to community services and women’s health across the life course. This report does not address health systems redesign to better support childbirth in the United States, as it is the subject of an ongoing study by another National Academies committee.4
4 See https://sites.nationalacademies.org/DBASSE/BCYF/Research_Issues_in_the_Assessment_of_Birth_Settings/index.htm (accessed July 26, 2019).
The postpartum period marks the time after delivery when maternal physiology returns to the nonpregnant state. This period, often referred to as the “fourth trimester,” is generally considered to last 6–8 weeks (ACOG, 2018b). Many traditional cultures prescribe 30–40 days of rest and recovery (ACOG, 2018b), such as zuò yuè zi (“doing the month”) in China and Taiwan (Pillsbury et al., 1978), a 21-day period of rest called sam chil il in Korea (Dennis et al., 2007; Park and Dimigen, 1995), la cuarentena (which also means quarantine and comes from cuarenta, the word for 40 in Spanish) in Latin America, and lying-in, which gave rise to the establishment of lying-in hospitals in England and the United States during the 20th century (Eberhard-Gran et al., 2010). In many cultures, the woman and her newborn are surrounded by family and community members who offer instrumental emotional support during this period. In the United States, however, many women have to navigate the postpartum transition on their own with little formal or informal support, wrestling with lack of sleep, fatigue, pain, stress, breastfeeding difficulties, and new onset or exacerbation of preexisting health and social issues, such as postpartum depression, substance dependence, intimate partner violence, and other concerns (ACOG, 2018b).
Postpartum care provides an opportunity to address these issues, but for many U.S. women, it is often limited to a single 6-week postpartum visit, and some women receive no postpartum care at all. In the Listening to Mothers III Survey, one-third of respondents reported attending one postpartum office visit, while 1 in 10 mothers reported not having a visit (Declercq et al., 2013). Among the latter group, “I felt fine and didn’t need to go” (42 percent), “I felt that I had already completed all of my maternity care” (18 percent), “too hard to get to office” (12 percent), and “didn’t have insurance” (7 percent) were the most common reasons given for not having a visit (Declercq et al., 2013, p. ix). Nonattendance is greater among certain groups, including low-income women, Medicaid insurance holders, and those with inadequate prenatal care (DiBari et al., 2014). One recent study of Medicaid deliveries in California found that only half of all women and one-third of African American women attended a postpartum visit (Thiel de Bocanegra et al., 2017).
Even for women who receive postpartum care, the typical 6-week postpartum visit may be too late to address some early onset issues and too limited to address other late onset or persistent problems. For example, more than half of postpartum strokes occur within 10 days of discharge (Too et al., 2018) and 17.5 percent of pregnancy-related deaths occur between 43 and 365 days postpartum, often as a result of cardiomyopathy or mental health conditions (Building U.S. Capacity to Review and Prevent Maternal Deaths, 2018), which a 6-week postpartum visit may be ill equipped to prevent. Rather than an arbitrary “6-week” check, in 2018,
the American College of Obstetricians and Gynecologists (ACOG) called for a reconceptualization of postpartum care as an ongoing process, the timing of which should be individualized and woman centered (ACOG, 2018b). ACOG recommends that all women have contact with their obstetric care providers within the first 3 weeks postpartum. Women with hypertensive disorders of pregnancy should be seen no later than 7–10 days postpartum, and women with severe hypertension should be seen within 72 hours (ACOG, 2018b). ACOG recommends that this initial assessment should be followed up with ongoing care as needed, concluding with a comprehensive postpartum visit no later than 12 weeks after birth.
ACOG also recommends that the comprehensive postpartum visit include a full assessment of physical, social, and psychological well-being, including the following domains: mood and emotional well-being; infant care and feeding; sexuality, contraception, and birth spacing; sleep and fatigue; physical recovery from birth; chronic disease management; and health maintenance (ACOG, 2018b). In practice, however, providing comprehensive postpartum care is disincentivized by prevailing health care financing practices, whereby the postpartum visit is bundled with the rest of obstetrical care, for which providers receive a global payment with no additional reimbursement for postpartum care. To deliver comprehensive postpartum care, ACOG also recommends an interprofessional postpartum care team, which consists of the primary maternity care provider, infant health care provider, primary care provider, and specialty consultants, as well as a care coordinator or case manager, lactation support provider, home visitor, and family and friends (ACOG, 2018b). Presently, the care settings where many women receive postpartum care preclude such interprofessional approaches, and transforming the organization and delivery of postpartum care in the absence of additional reimbursement will likely be challenging. Lastly, ACOG recommends that the postpartum care team help facilitate transition to ongoing well-woman care (ACOG, 2018b). This is especially important for women who have chronic health conditions or have experienced a pregnancy complication, given growing research suggesting that pregnancy may be a window to a woman’s future health outlook. For example, women with pregnancies complicated by preterm birth, gestational diabetes, or hypertensive disorders of pregnancy have a higher lifetime risk of maternal cardiometabolic disease (Dassanayake et al., 2019). However, for many low-income women, especially in states without Medicaid expansion, access to ongoing well-woman care becomes limited upon termination of their Medicaid coverage at 60 days postpartum.
Recognizing the importance of the postpartum period as a critical time for a woman and her infant that sets the stage for their long-term health and well-being, this committee calls for a redesign of postpartum care to improve access, content, quality, delivery, and financing to better leverage its potential for advancing health equity. As will be discussed later
in the chapter, access could be enhanced by colocation of maternal and infant services; greater use of home visiting, doula services, community health workers, and mHealth technology; and increased access to paid family and medical leave. Expanded care is needed to more holistically address not only clinical issues but also psychosocial and environmental concerns, with greater attention to social determinants of maternal, child, and family health and well-being. Quality could be improved by promoting quality measurement and continuous quality improvement (CQI), supporting workforce training, and, as discussed throughout the chapter, addressing implicit bias and unequal treatment along the care continuum. Organization and delivery of care could be strengthened through care coordination, systems integration, and interprofessional teamwork. To support this redesign, the committee calls for developing and testing innovative financing models, including pay-for-performance and pay-for-outcomes, unbundling postpartum care from global payment, and extending Medicaid coverage for 1 year postpartum.
The goal of pediatric care is to provide services to children and families that will improve their health status and functioning. Usual services include brief clinical encounters (“checkups”) beginning in the hospital immediately after birth and continuing through childhood and adolescence, with decreasing visit frequency. Typical services have traditionally included providing regular immunizations, monitoring growth and development and nutrition, advising parents on common aspects of child development, and managing common illnesses and injuries. Child health care has a focus on prevention and includes regular screening for a wide range of conditions, including drowning risk, lead exposure, anemia, adversity, hunger, and infectious diseases, as well as child behavior and development.
Much of the work in pediatric well-child care grew from early efforts of the U.S. Children’s Bureau and then the growth of public health departments in the states (Lesser, 1965). The U.S. Children’s Bureau emphasized early nutrition and safe milk for babies and checked feeding and weight gain. With the development of immunizations to protect children (and communities) from dangerous infectious diseases, many state health departments developed immunization clinics. The 1921 Sheppard-Towner Act5 led to substantial federal investment in well-child health programs.
5 Also known as the National Maternity and Infancy Protection Act or the Promotion of the Welfare and Hygiene of Maternity and Infancy Act, the Sheppard-Towner Act provided states with federal funding to develop programs that would increase education of prenatal and infant care. The Act was passed in an effort to decrease the high rates of infant mortality in the United Sates. See https://embryo.asu.edu/pages/sheppard-towner-maternity-and-infancy-protection-act-1921 (accessed April 19, 2019).
The American Medical Association (AMA) opposed the Act as government intrusion into health care, leading to the departure of pediatricians from the AMA and the formation of the American Academy of Pediatrics (AAP) (Baker, 1994). With the growth of the AAP, pediatricians (many of whom had worked in the public well-child clinics) increasingly integrated the elements of well-child care into their practices, ultimately overshadowing public service programs (Baker, 1994). Thus, much of pediatric well-child care grew from notions of improving child nutrition and weight gain and preventing serious infections (e.g., diphtheria, tetanus, polio). Many of those acute infections have disappeared (although immunizations remain critically important) and have been replaced with epidemics of chronic diseases in pediatric populations. Where less than 2 percent of children in 1960 had a serious chronic condition that interfered on a daily basis with their usual activities (e.g., school and play), by 2010, more than 8 percent had such conditions, representing a 400 percent growth in these conditions (Halfon et al., 2012; Houtrow et al., 2014; Newacheck et al., 1986; Perrin et al., 2014). These high rates of chronic conditions mainly reflect greater numbers of children with obesity, asthma, neurodevelopmental conditions (especially autism spectrum disorders [ASDs]), and mental health conditions. While rates of mental health conditions increase with child age, one in six or more children ages 2–8 have diagnosed mental, behavioral, or developmental conditions (CDC, 2019a). Children with chronic medical conditions also have higher rates of mental and behavioral conditions than similar children without chronic conditions (Perrin et al., 2019).
These growing rates have led health care providers for children to recognize the importance of behavioral health in all aspects of pediatric care—the interaction of physical and mental/behavioral health and their common coexistence, along with the increasing rates of MBH conditions in children and adolescents. Initially codified in some of the Rochester child health studies more than a half century ago (Haggerty et al., 1975), this interest has grown into active work by several professional groups to build capacity and competence in behavioral health into the well-child experience (AAP, 2018; Foy and AAP Task Force on Mental Health, 2010). MBH accounts for a large proportion of visits in pediatric primary care and complicates care for most chronic conditions.
Screening is a key step in prevention and an integral part of pediatric care. Given the brief time available in a child health supervision visit, pediatric clinicians cannot do all of the recommended screening, so they make choices for their practices, based in part on the characteristics of their patient population. Generally, child health practitioners (e.g., pediatricians, family physicians, family nurse practitioners, physician assistants) choose screening instruments that are brief, easily scored and
interpreted, and able to identify conditions that have moderate prevalence or saliency in their practice communities (AAP, 2016). Most child health professionals screen for growth and development, including behavioral issues and developmental delays, and for certain conditions that early treatment may ameliorate, including ASD. AAP has codified much of child and adolescent preventive care in its document Bright Futures, and the Patient Protection and Affordable Care Act (ACA) included Bright Futures as the basis for pediatric preventive care (AAP, 2016).
The high rates and persistence of poverty among America’s children have led many groups to address this problem. To address food insecurity, AAP and the Food Research & Action Center (FRAC) developed a toolkit for pediatricians that includes a validated, AAP-recommended two-question screening tool called The Hunger Vital Sign™ (AAP and FRAC, 2017). In addition, AAP, recognizing that poverty affects so many aspects of child health and development and essentially all types of clinical problems, joined these efforts by making poverty a major segment of its Agenda for Children (AAP, n.d.-a). All pediatricians face the consequences of child poverty in their practices. Children with leukemia and other serious conditions experience higher mortality, and poverty affects all children’s ability to adhere to medication and treatment (Mishra et al., 2011). Low-income children have higher rates of most chronic conditions and typically have more severe cases (WHO, n.d.). Poverty affects parents’ resources to care for their children’s illnesses and limits access to many treatment services. AAP has educated pediatricians about poverty and what they can do in their practices (AAP Council on Community Pediatrics, 2016), and pediatricians increasingly screen for poverty and other SDOH, particularly checking for access to day care, home and neighborhood safety, hunger, and housing, especially along with partnering community agencies (Garg et al., 2015; Shekarchi et al., 2018).
Furthermore, pediatricians have provided much leadership in the development of life course sciences, theory, and practice, in part because of their perspective based in the dynamics of child development in the context of families and communities, along with their recognition of the early childhood antecedents of many long-term health and mental health conditions (Halfon, 2012; Halfon and Hochstein, 2002).
Over the past few decades, there has been significant growth in diversity in the pediatric population without similar diversification of the pediatrics workforce (AAP Committee on Pediatric Workforce, 2013). Recognition of disparities has driven pediatric efforts to address equity and ensure equal access to services and treatment. Efforts to transition into team care and use telehealth mechanisms reflect in part the recognition that such changes will help pediatricians more effectively work on issues
of poverty in their patients and communities. These changes acknowledge that enhancing pediatric practice with personnel who are knowledgeable and skillful in helping families access a breadth of community services will help address disparities.
Pediatric care in the United States is organized across a variety of small and large practices, federally qualified health centers (FQHCs), and hospital-based programs (for general and specialty care). Increasingly, smaller, community-based practices have merged to become larger, multisite practices, some limited to the care of children and youth, while others are multispecialty programs offering a larger range of services to a population of all ages. Many children’s hospitals have hospital-based primary care programs and/or organized relationships or networks with primary care practices in their surrounding communities. Both safety net hospitals and FQHCs more often serve a large, low-income, Medicaid-insured population (Nath et al., 2016) with overrepresentation of black and Latino children and youth (Georgetown University Center for Children and Families, 2017, 2018). Pediatricians have pioneered the concept of the medical home, an organized central place to coordinate all of the health care needs of a patient or family. In recent years, this notion has spread among many other physician groups, especially family medicine and internal medicine. Expanded visions of the medical home increasingly embrace characteristics of community-based, comprehensive care (Ader et al., 2015; Bair-Merritt et al., 2015; Homer et al., 2008; Patient-Centered Primary Care Collaborative, n.d.; Stille et al., 2010). Medical homes have helped efforts, especially in family medicine and pediatrics, to move to a whole-family, whole-child approach. Routine screening in pediatric care for parental mental health (especially postpartum depression) and other risks (e.g., smoking, firearms) and inclusion of parent training programs in pediatric programs are examples of ways that clinical care has become more family focused.
The distribution of subspecialists—physicians who care for more complex and usually chronic conditions—differs for children and adults. Adult-treating subspecialists are widely distributed, but subspecialists for children are mainly centralized in hospitals that care for large numbers of children and youth. This distribution leads to different problems with access for young children and families. These children’s hospital programs, some freestanding and others part of larger general hospitals, provide the majority of health care for children with highly specialized needs—the groups with complex medical conditions and rarer childhood conditions. The substantial numbers of children and youth with chronic and complex health conditions, especially those with less common chronic conditions, need regular access to specialized pediatric care (e.g., specialized surgeons or pediatric cardiology).
The need for the integration of health care and the whole-family approach is discussed in more detail later in the chapter.
To realize the full potential of health care services, people need access to regular primary and preventive care across the life course. The nation will be best served by a health care system that guarantees all people universal access to high-quality health care across the life course and in which preconception, prenatal, and pediatric care represent a series of well-timed, more intense encounters with a broader array of services (“boosters”) during critical junctures in life. Cramming a life course worth of health care into a single preconception visit (or even a few visits) a few months before attempting to conceive will do little to advance equity in birth outcomes or children’s health. Similarly, prenatal and pediatric care that is primarily based on episodic, short visits to a medical clinic or office for a narrow range of clinical services scheduled when convenient for health care systems and providers is not enough to reverse the trend of centuries of inequitable health care treatment and outcomes experienced by our nation’s children.
Health Insurance Is Necessary But Not Sufficient
Health insurance is a major facilitator to ensuring access to health care services; lack of insurance coverage is a significant barrier (Bailey et al., 2016; Choi et al., 2011; DeVoe et al., 2010, 2012a; Howell and Kenney, 2012; IOM, 2002; Sommers et al., 2015, 2017a; Tumin et al., 2019; Wallace and Sommers, 2016; Wherry et al., 2016). A Commonwealth Fund report found that insured women were significantly more likely than uninsured women to receive cancer screenings and other preventive services and to have a regular source of care (Gunja et al., 2017) (see Figure 5-1). Even for those with a usual source of care, health insurance improves access to more comprehensive services (DeVoe et al., 2008c, 2012a). For children, health insurance substantially improves health care access and use (IOM, 1998). The large majority of children and youth in the United States (about 95 percent) have health insurance coverage, with about 30 to 40 percent
of it from public sources: Medicaid and the Children’s Health Insurance Program (CHIP) (Alker and Pham, 2018; Cornachione et al., 2016). The small percentage of children and youth without health insurance use fewer health care services and fare much worse on measures of health and health care quality (DeVoe et al., 2008a,b, 2010, 2012b).
Although studies of health insurance interventions are usually natural experiments, the Oregon Health Insurance Experiment, in which a 2008 lottery extended Medicaid to selected residents, represented a rare opportunity to assess the impact of insurance coverage through a randomized study design (James, 2015). Findings from the experiment confirm the well-documented associations between an individual’s health insurance and access to health care and the causal link between a parent having access to insurance and a child gaining coverage (Bailey et al., 2016; DeVoe et al., 2015b,c; Gold et al., 2014; Hatch et al., 2016; Marino et al., 2016; O’Malley et al., 2016). Efforts to achieve expanded coverage in Massachusetts and several other states also led to similar landmark studies showing the importance of health insurance as a facilitator of health care access (Finkelstein et al., 2012; Smith and Chien, 2019).
Shortly after Oregon’s insurance expansions and related efforts to achieve expanded coverage in Massachusetts and elsewhere, the ACA
increased access to health insurance coverage nationally to millions of Americans through a combination of Medicaid expansions, private insurance reforms, and premium tax credits and subsidies through new “exchange” plans. After the ACA, the percentage of uninsured women decreased from 20 percent (19 million) in 2010 to 11 percent (11 million) in 2016 (Gunja et al., 2017). Low-income women and women of color have made particularly large gains. Women ages 19–64 earning less than 200 percent of the federal poverty level (FPL) who are uninsured fell from 25 percent in 2010 to 16 percent in 2016 for black women, 49 percent in 2010 to 32 percent in 2016 for Latina women, and 34 percent in 2010 to 18 percent in 2016 overall (see Figure 5-2). For children and youth, the ACA also led to the lowest rates of child uninsurance in U.S. history. While some of the insurance gains for pediatric populations reflected new eligibility under the ACA, most gains resulted from newly insured parents learning of their children’s eligibility for existing programs (particularly
Medicaid and CHIP) (Garrett and Gangopadhyaya, 2015), reconfirming that insurance is a family affair (DeVoe et al., 2008b, 2009, 2011a, 2015a,c,d; Dubay and Kenney, 2003; IOM, 2002; Yamauchi et al., 2013).
Prior to the ACA expansions, insurance coverage was not accessible to many low-income women of child-bearing age unless they became pregnant. Even after becoming pregnant, some women experienced long delays to obtain coverage, and some were unable to access care until the second or third trimester (see Table 5-3). CDC reported that in 2009, the percentage of women who were uninsured decreased from 23.4 percent in the month before pregnancy to 1.5 percent at the time of delivery, while Medicaid coverage increased from 16.6 percent in the month before pregnancy to 43.9 percent at delivery (D’Angelo et al., 2015). Even with the recent gains in access to coverage before and during a pregnancy, more than one in five (21.3 percent) American women who gave birth in 2016 began prenatal care after the first trimester; 4.6 percent began care in the third trimester; and 1.6 percent received no care at all. In all, approximately 15 percent of American women received inadequate prenatal care. Moreover, there are significant racial/ethnic, socioeconomic, and geographic disparities in prenatal care use (Osterman and Martin, 2018).
In addition to access to coverage, the ACA further improved access to essential care for women, especially preconception care, by mandating coverage for women’s preventive services, including all Food and Drug Administration–approved contraceptive methods and counseling and at least one well-woman preventive care visit per year with no cost-sharing (HRSA, 2018; Women’s Preventive Services Initiative, n.d.). Preconception care is also covered under well-woman preventive visits (Women’s Preventive Services Initiative, n.d.). Additionally, the law mandated coverage for essential health benefits (EHBs), including maternity care and mental health services. The ACA prohibited gender rating (charging women a higher premium than men) and banned lifetime caps on benefits and exclusions based on preexisting conditions, which protected access for women with chronic conditions. A Commonwealth Fund report found that between 2010 and 2016, the percent of women ages 19–64 with health conditions who found it very difficult or impossible to find coverage they needed in the individual market decreased by nearly half, while those who said they were not getting care because of costs (did not fill prescription, skipped recommended test or treatment, had a medical problem but did not seek primary or specialty care) decreased from 48 percent to 38 percent (Gunja et al., 2017). Several other studies have also shown similar improvements (Angier et al., 2015, 2017, 2019a; Heintzman et al., 2017; Hoopes et al., 2016; Huguet et al., 2017, 2018; Sommers et al., 2016, 2017b).
Presently, it is unclear what affects recent efforts to deregulate the ACA, such as the repeal of the individual mandate, proposed extension
TABLE 5-3 Trimester That Prenatal Care Began, by Selected Characteristics: United States, 2016
|Timing of PNC|
|Late or No PNCa|
|Selected Characteristic||First Trimester||Second Trimester||Total Percent||Late PNCb||No PNC|
|Age of Mother|
|40 and over||78.4||16.0||5.6||4.1||1.5|
|Race and Hispanic Origin|
|American Indian or Alaska Native||63.0||24.5||12.5||9.2||3.3|
|Native Hawaiian or Other Pacific Islander||51.9||28.9||19.2||14.2||5.0|
|Other Pacific Islander||43.8||31.3||24.8||18.4||6.4|
|Timing of PNC|
|Late or No PNCa|
|Selected Characteristic||First Trimester||Second Trimester||Total Percent||Late PNCb||No PNC|
|Central or South American||68.1||22.7||9.2||6.9||2.2|
|Other and unknown Hispanic||74.3||18.8||6.8||5.1||1.7|
|4th birth or higher||66.2||23.8||10.0||6.7||3.3|
|Less than high school||62.7||26.1||11.2||7.5||3.7|
|Bachelor’s degree or higher||87.6||9.1||3.3||2.8||0.5|
|Source of Payment for the Delivery|
NOTES: PNC = prenatal care. Chi-squared test statistics for each variable by trimester prenatal care began were statistically significant (p < 0.05). Data are sourced from the National Center for Health Statistics National Vital Statistics System.
a PNC that began in the third trimester and no PNC.
b PNC that began in the third trimester.
c Excludes women under age 25.
d Significantly increasing trend in first trimester PNC by educational attainment (p < 0.05).
e Includes associate’s degree.
f Includes Indian Health Service, CHAMPUS (Civilian Health and Medical Program of the Uniformed Services) or TRICARE, other government (federal, state, or local), and charity.
SOURCE: Osterman and Martin, 2018.
of short-term coverage policies (which do not have to comply with many ACA consumer protections) (Keith, 2018), state waiver for EHBs, and religious and moral exemptions from contraceptive coverage mandates, will have on access to primary and preventive services for both men and women. It is likely that, as with prior policies that scaled back insurance access, these repeal efforts will negatively impact access to and use of recommended primary and preventive care services (Carlson et al., 2006; DeVoe et al., 2012a; Solotaroff et al., 2005; Tumin et al., 2019).
As demonstrated above, Medicaid is an important source of insurance coverage and facilitator of basic access to women’s health care services, particularly for low-income women. In 2014, Medicaid provided more than 25 million low-income women with health and long-term care coverage (Kaiser Family Foundation, 2017), approximately two-thirds of them between ages 19 and 49. Medicaid is particularly important for low-income women and women of color. While overall 1 in 5 women of reproductive age (20 percent) were enrolled in Medicaid in 2015, 27 percent of Hispanic women, 31 percent of African American women, and nearly half (48 percent) of low-income women in the United States were enrolled (Sonfield, 2017). Expansion of Medicaid coverage for pregnant women in the 1990s led to significant increases in access to and use of prenatal care; today, Medicaid covers nearly half of all births in the United States (Kaiser Family Foundation, 2017). For nonpregnant women, the ACA legislation extended Medicaid eligibility to all individuals with household incomes up to 138 percent of the FPL; however, a 2012 Supreme Court ruling in National Federation of Independent Business v. Sebelius made Medicaid expansion optional for states, resulting in inconsistent coverage policies across the country (Kaiser Family Foundation, 2017). As of May 2019, 36 states and Washington, DC, have expanded Medicaid; 14 states have not (Kaiser Family Foundation, 2019). Overall, the rate of uninsurance among low-income women of reproductive age decreased by 13.2 percentage points due to the ACA Medicaid expansions (Johnston et al., 2018). A recent study found that from 2011 to 2016, states that expanded Medicaid showed significant improvements in black-white disparities in preterm, very preterm, LBW, and very LBW rates compared to states that did not (Brown et al., 2019). Studies have shown that in states that expanded Medicaid, disparities by race and ethnicity in the rates of insurance coverage and access to care have narrowed more than in states that have not (Artiga et al., 2019; Hayes et al., 2017).
Medicaid and CHIP finance health insurance for nearly 50 percent of U.S. children and youth. Children and youth with public insurance have about the same rates of use and quality of care as those with commercial insurance (DeVoe et al., 2011b,c), although those data do not account for the higher rates of chronic conditions and disability among
publicly insured children. Although most U.S. children and youth currently have health insurance, children who are low income or from racial and ethnic minority populations face problems with lack of access to ongoing, comprehensive health care services (McCormick et al., 2001; Weinick and Krauss, 2000). Children and youth with public insurance (Medicaid and CHIP) disproportionately include black and Latino populations (Georgetown University Center for Children and Families, 2017, 2018).
Medicaid demonstration waivers have shown promise in allowing states to test new approaches in Medicaid that differ from federal program rules (Musumeci et al., 2018) in order to expand and broaden access to coverage for populations that have traditionally not been eligible for Medicaid. For example, 27 states have established limited-scope Medicaid family planning programs through waivers to extend access to family planning services to uninsured women who do not qualify for full Medicaid coverage. This includes low-income women whose incomes are not low enough or who have lost Medicaid eligibility after giving birth (Kaiser Family Foundation, 2017). Additionally, Louisiana has added an interpregnancy component to their Medicaid waiver to provide interconception care for low-income, high-risk women who had an adverse birth outcome (ASTHO, 2013). Medicaid waivers have also helped children and youth with special health care needs access a number of treatment services in home and community settings. The original Medicaid waiver was for an Iowa child who had Medicaid coverage while hospitalized (because her parents’ income was not considered for inpatient eligibility) but would lose it if she came home with multiple and complex needed services. The waiver allowed hospital care to be substituted with home care (Perrin et al., 1993).
Other Medicaid demonstration waivers have been proposed that could negatively impact eligibility, enrollment, and benefits, including work and reporting requirements, coverage lock-outs, premium cost-sharing, restrictions on presumptive eligibility and retroactive coverage, and time limits on coverage (Flowers and Accius, 2019). The impact of these waivers on access to preconception, prenatal, and pediatric health care services is still being studied; however, similar policies making Medicaid eligibility more restrictive in the past (e.g., proof of citizenship requirements) have had negative effects on access to care (Angus and Devoe, 2010; Bauer et al., 2011; Hatch et al., 2014). Arkansas has seen thousands of working-age adults, including many with dependent children at home, lose Medicaid benefits, along with no growth in job participation (Rudowitz et al., 2019; Sommers et al., 2019). However, federal courts struck down Arkansas’ work requirement for expanded Medicaid coverage in March 2019. Recent reports indicate the first increase in rates
of uninsurance among children in a decade, in part reflecting new restrictions on parents’ access (Alker and Pham, 2018).
Many Factors Affect Access to Health Care Services
A complex array of factors beyond insurance coverage influence preconception, prenatal, and pediatric care use (Heaman et al., 2014; Kalmuss and Fennelly, 1990). Some of these factors include the complexity of household needs and social challenges (e.g., child care, transportation, addictions, lack of support), caregiver qualities (lack of time, negative behaviors), health system barriers (shortage of providers), and program/service characteristics (distance, long waits, short visits). Such barriers (particularly transportation to health care facilities, ability to pay for needed treatments, taking time from work for health care appointments, and costs related to housing and food) may take priority over health care for families.
Regarding access to prenatal care, a study of 246 African American women residing in Washington, DC, identified psychosocial stress, substance use, child care problems, negative attitudes toward pregnancy and prenatal care, insurance/financial constraints, and nonparticipation in the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) program as key determinants of lower than recommended rates of prenatal care use (Johnson et al., 2007). Another study of low-income African American women in Milwaukee, Wisconsin, identified structural barriers to prenatal care, such as transportation and insurance; negative or ambivalent attitudes toward prenatal care, perceived poor quality of care, and unintended pregnancy; and psychosocial stressors, such as overall life stress and chaos (Mazul et al., 2017).
Children and youth with special health care needs (SHCN) represent a population that experiences unique access challenges. A sizable percentage of U.S. children (10–20 percent or more, depending on the definition; about 11.4 percent of children ages 0–5 and 22.7 percent of children ages 6–11) have SHCN (HHS, 2015; NASEM, 2018) and their needs depend on the severity and prevalence of the condition. Most children and youth with more common conditions (asthma, obesity, mental health conditions, and neurodevelopmental conditions) receive the bulk of their care in community pediatric settings, including hospital outpatient clinics. Children and youth with more severe and less common conditions get a large part of their care from specialized pediatric hospitals (Perrin et al., 2014). Many households have difficulty gaining access to specialized care because most subspecialists are found in centralized children’s hospitals, which may be distant from their homes. Children insured by Medicaid, who are disproportionately black or Latino (Georgetown University
Center for Children and Families, 2017, 2018), particularly experience problems in accessing subspecialists (Bisgaier and Rhodes, 2011). Furthermore, narrow insurance networks may not include all needed specialists, creating barriers to needed subspecialty care.
Ensuring access to quality health care requires addressing both financial and nonfinancial barriers. Lu et al. (2010) identified a number of promising strategies to increase financial and nonfinancial access to timely care, including policy initiatives to promote innovative care models, support outreach and care coordination, and increase provider participation in Medicaid-funded care. State Medicaid agencies have increasingly relied on managed care organizations (private-sector companies that contract with Medicaid to manage the program) to implement and manage Medicaid programs. Currently, about 80 percent of Medicaid recipients receive care through a managed care arrangement (MACPAC, 2016). Many managed care organizations have experimented with new programs or financing, although there are few consistent patterns (Institute for Medicaid Innovation, n.d.). It is also not yet apparent whether this trend has had a significant impact on reducing health disparities. Another example is Oregon’s coordinated care organization (CCO) model, implemented in 2012 and designed to improve the coordination of care for the state’s Medicaid beneficiaries. In the state, CCOs cover a distinct geographic area and have broad budgeting authority for Medicaid and CHIP funding within that area, along with incentives to improve quality and broaden attention to social determinants of care in part through active collaboration with schools and community agencies (Oregon Health Authority, 2018; Stecker, 2013). CCOs led to significant increases in early prenatal care initiation and a reduction in disparities across insurance types but no difference in overall prenatal care adequacy (Muoto et al., 2016).
Regarding access to postpartum care, colocating postpartum and well-baby care has been suggested as a strategy for improving access (Stuebe et al., 2019). Colocating care could reduce transportation, child care, medical leave, and other barriers and facilitate care coordination for issues that require joint assessment and management of both mother and infant, such as breastfeeding (Stuebe et al., 2019). Greater use of home visitors, doulas, and community health workers can also help improve access (Hans et al., 2018). Providing culturally congruent care to women of color can increase breastfeeding and reduce perinatal disparities (Kozhimannil et al., 2013), but only three states currently provide Medicaid coverage for doula services (Stuebe et al., 2019). Leveraging mHealth technology, such as text messaging, remote blood pressure monitoring, and telehealth, can also improve postpartum follow-up (ACOG, 2018b; CMS Maternal & Infant Health Initiative, 2015). Presently, nearly one-quarter of women return to work within 10 days postpartum, and nearly half return to work
within 40 days postpartum (Klerman et al., 2014); expanding paid family and medical leave could also increase access to and use of postpartum care (Rossin-Slater and Uniat, 2019) (see Chapter 6 for a discussion on paid family leave). Because many health and psychosocial issues persist or emerge beyond 60 days postpartum, some experts have called for extending Medicaid coverage for at least 12 months postpartum, especially in Medicaid nonexpansion states (Stuebe et al., 2019).
For nearly three decades, state Title V programs have played an important role in increasing access to and use of timely prenatal care and other family health care services through outreach and coordination by (1) facilitating partnerships among agencies that provide direct services to pregnant women; (2) helping to ensure that maternal and child health professionals in WIC, Head Start, and other public programs provide pregnant women with accurate and current information on coverage in their state; (3) increasing access to presumptive Medicaid eligibility, which provides pregnant women with access to immediate prenatal care; and (4) increasing continuity of coverage for low-income women who become pregnant (Association of Maternal & Child Health Programs, 2016). State and federal Maternal and Child Health Programs (Title V) have had even longer histories of involvement with very young children, following earlier Children’s Bureau programs for safe milk and infant nutrition (Lesser, 1965). At least 30 percent of federal support for state programs has been allocated for well-child programs, and at least 30 percent goes to programs for children with SHCN (formerly the Crippled Children’s Service) (HRSA, 2019, n.d.). As with women’s health, state programs have helped to facilitate partnerships across key agencies, improve knowledge of the health status of children and youth in the state, and link households with other agencies, especially Medicaid and the U.S. Social Security Administration (for Supplemental Security Income [SSI] coverage).
Recent growth of community acute care clinics—some operated by pharmacy chains and others by larger hospitals—have offered new community-based access to health care. These centers offer immediate and convenient care for (generally minor) acute conditions. The centers offer variable connections to children’s and families’ ongoing primary care; in several communities, such centers have worked to share medical records and referral information with ongoing primary care programs (Conners et al., 2017). Acute care centers, at times collaborating with telehealth companies, can offer immediate and convenient services. For example, a parent of a sick child can call from home (or work), reach a health care clinician, describe symptoms, and efficiently receive advice. Nonetheless, most innovative walk-in clinics, acute care centers, and commercial telehealth models have focused on middle-income communities and less on low-income areas. Thus, there is no evidence that they reduce disparities.
Improving Access to Needed Health Care
Based on its review of the evidence in the sections above, the committee concludes:
To address the issues identified related to access to care, the committee recommends:
Achieving this recommendation requires
- Increasing access to patient- and family-centered care. Specific actions include integrating services longitudinally, vertically, and horizontally to increase entry points to care for children and families; incorporating enabling services to facilitate access to care; expanding attention to whole family needs in clinical care; and overcoming household challenges, such as transportation and child care needs. (See the sections that follow for discussion on the need to integrate health care services across the life course.)
- Supporting comprehensive access across the life course. Expand comprehensive supports for health across the life course. Programs should increase awareness of and access to family planning services and general preventive health services that keep parents healthy and promote positive attachments essential to early life development.
- Protecting access to benefits. Ensure continuous coverage and access for all men, women, and children. Coverage should include child and family preventive services and EHBs, with a prohibition against lifetime benefit caps and preexisting condition exclusions.
- Actively promoting inclusion in coverage and care. Promote culturally and linguistically appropriate outreach and services as well as increased diversity in the health care workforce.
- Systematic application of measures. For example, adoption of a measure to assess disparities in timely and adequate access to well-woman care, prenatal, and pediatric care as a national performance measure by the Title V Maternal and Child Health Block Grant.
Quality health care is timely, equitable, safe, patient centered, efficient, and effective (IOM, 2001). Equitable care means care that does not vary in quality because of demographic characteristics, such as sex, ethnicity, geographic location, or SES (IOM, 2001). For populations who have access to health care services, the quality of the care they receive is not always safe and is often not equitable. Regarding preconception care, a survey of more than 800 women of reproductive age found that more than 1 in 4 (27 percent) were prescribed a medication with a potential teratogen (a potential cause of birth defects). Of these women, 43 percent received no counseling from their provider regarding the teratogenicity of the medication or the need for contraception (Schwarz et al., 2013). A recent review of 31 studies (Goossens, 2018) identified multiple barriers to high-quality preconception care at the provider level (unfavorable attitude and lack of knowledge of preconception care, not working in a medical discipline or clinical setting that provides maternity care, lack of clarity on the responsibility for providing preconception care) and the client level (not contacting a health care provider in the preconception stage, negative attitude, and lack of knowledge of preconception care). Limited resources (e.g., lack of time, tools, guidelines, and reimbursement) were frequently reported at the organizational and societal levels. Disparities are well documented in prenatal and pediatric care across similar domains.
Performance Measurement and Quality Improvement Efforts
Performance measurement is a common strategy currently being employed by state and local governments, payers, hospital accreditation bodies, and professional organizations to improve health care quality. It is often linked to change strategies—public reporting and pay-for-performance (Berwick et al., 2003; Chassin, 2002; Hibbard et al., 2005; IOM, 2006; Lindenauer et al., 2007; Millenson, 2004). Public reporting fosters interest in
quality on the part of physicians and hospital leaders, perhaps by appealing to their professional ethos or creating market advantages (Lindenauer et al., 2014; Marshall et al., 2000). Pay-for-performance programs are intended to enhance the business case for quality improvement (QI) by rewarding excellence and reversing what have been described as perverse financial incentives that can deter providers and hospitals from investing in QI efforts (Dudley et al., 1998; Epstein et al., 2004; Millenson, 2004).
To date, the National Quality Forum has endorsed 18 perinatal and reproductive measures, none of which addresses ambulatory6 preconception or prenatal care (NQF, 2016). The only prenatal and postpartum care performance measures currently in use are the two Healthcare Effectiveness Data and Information Set measures on the rates of first trimester prenatal care and postpartum visits (NCQA, 2018).
There are more measures specific to the quality of child health care that address some of the main aspects of well-child care (e.g., immunizations, regular visits, screening, developmental assessment). The reauthorization of CHIP in 2009 provided the first major support for quality measurement in public health insurance programs for children and youth and led to substantial growth in pediatric care measures and ongoing efforts to expand and refine these measures (AHRQ, 2018; Perrin, 2012). Measures have generally focused on children without chronic conditions, with the exception of high-prevalence conditions (especially asthma), and quality-of-care measures for children with disability are much more limited (Perrin, 2012). Medicaid publishes and updates a quality measure set for children (Medicaid, n.d.). Several groups have catalogued children’s quality measures (Beal et al., 2004), and the AAP and the National Initiative for Children’s Health Quality, among others, have pursued consensus on best child health quality measures (Adirim et al., 2017).
The Collaborative Improvement and Innovation Network (CoIIN) is an example of a model aimed at improving maternal and child health that combines both CQI and collaborative learning to address infant mortality and perinatal disparities. The CoIIN was launched in 2012 in 13 southern U.S. states (Public Health Regions IV and VI), with early success leading to a national expansion of the program to other states. The CoIIN brought together state teams of clinical and public health leaders and policy makers to implement evidence-based and promising strategies, supported by virtual shared workspace, CQI experts, and a data dashboard that provided real-time data to drive real-time improvements (Ghandour et al., 2017). Between 2011 and 2014, early elective delivery at less than 39 weeks decreased by 22 percent versus 14 percent in other regions, smoking cessation during pregnancy increased by 7 percent
versus 2 percent, and back sleep position increased by 5 percent versus 2 percent. Preterm birth decreased by 4 percent, twice that observed in other regions, but infant mortality reductions did not differ significantly (Hirai et al., 2018b). The CoIIN is particularly notable in its application of CQI methodologies, which have largely been limited to clinical settings, to drive improvements in population-level perinatal outcomes.
While these efforts have improved adherence to standardized care processes, inequitable care remains pervasive throughout the system. Inequitable care is care that does not address the unique challenges and vulnerabilities made relevant by differential life experiences based on social characteristics, such as gender, ethnicity, language preference, geographic location, and SES (IOM, 2001). For example, a major component of preventive health care is culturally and linguistically sensitive and literacy-appropriate health education to promote behavioral changes. Thus, an office or clinic visit is only the prelude to fully completing the care. To fully attain the effects of care, an individual or family needs to take that education to the home and follow through with it (e.g., eat more healthy foods). If the social environment in the community or home does not have the resources to support these behavioral changes (insufficient income or no neighborhood stores to purchase healthy foods), the care plan remains unfulfilled, and the effectiveness of the care remains limited, despite the practitioners’ best intentions (Lu et al., 2010).
Multiple studies of the implementation of quality measures indicate substantial improvement in attention to specific processes in the delivery of health care services (e.g., increasing screening rates, testing for harmful side effects of treatment). Increasingly, payers have assessed quality of care (e.g., screening and immunization rates) and offer financial incentives to achieve quality thresholds. These incentives have improved processes linked to better health outcomes; further research is needed to determine their impact on health outcomes directly and on disparities. Often, these assessments are done at a population level and do not highlight disparities or account for practices caring for populations with different characteristics. Thus, in addition to traditional methods to assess performance and QI, there are a number of other areas that are receiving increased attention in efforts to attain equitable health care practices, including developing new metrics and measurement methods to account for child development and well-being in the context of an intersectional and multidimensional view of health and health equity and enhanced workforce education and training (including training to recognize and address implicit bias).
Development of New Metrics and Measurement Methods
Growing recognition of MBH concerns among children and youth has led to the development of newer measures of developmental and
behavioral screening (including social and emotional screening), treatment, and outcomes, including measures of follow-up for medications used to treat some pediatric mental health conditions. Few measures routinely collected today address the SDOH. Furthermore, toxic stress and its precipitants, including many social determinants, such as adverse childhood experiences (ACEs), housing instability, food insecurity, or poverty and racism, are inadequately assessed in health care settings. Substantial evidence notes that much adult chronic disease has its origins in childhood and adolescence, often associated with the SDOH discussed throughout this report (Marmot et al., 2001). (See also the discussion of the Perry Preschool and Abcedarian Projects in Chapter 7.) The majority of adult mental health conditions originate in childhood or adolescence. An emerging body of research also suggests that some chronic childhood and adult diseases have a fetal origin (Barker, 1995, 2003, 2004; Calkins and Devaskar, 2011; de Boo and Harding, 2006; Kimm, 2004; Skogen and Overland, 2012) and that factors such as maternal and paternal stress, nutrition and physical activities, and occupational and environmental exposures may play a critical role in epigenetic modification and developmental programming of future health and disease. Information regarding these risks is not routinely collected, monitored, or reported during standard preconception or prenatal care visits, nor would this be feasible in a brief office visit. Until recently, pediatric care providers were not routinely screening for ACEs; however, the AAP released two policy statements and conducted substantial practitioner education, which bolstered rates of attention in community practice (Kerker et al., 2016; Szilagyi et al., 2016). Even having clear standards for screening does not ensure that all child health practitioners screen for all relevant issues. A recent paper using parent reports found that, nationally, 37 percent of children received developmental screening with a validated tool (Hirai et al., 2018a). Another study, based on physician report, indicated that more than 80 percent of pediatricians reported using one or more formal tools to screen for autism, with 88 percent screening at 18 months and 74 percent screening at 24 months (Coury et al., 2017).
Several national initiatives have begun to advance primary care clinicians’ understanding of ACEs and toxic stress and their capacities and competencies to identify and respond to risk factors for toxic stress and other adversities, such as the Trauma-Informed Primary Care Initiative, a partnership between the National Council for Behavioral Health and Kaiser Permanente7; the National Pediatric Practice Community on ACEs, an initiative of the Center for Youth Wellness8; the Trauma-Informed Care
7 For more information, see https://www.thenationalcouncil.org/trauma-informed-primary-care-initiative-learning-community (accessed April 29, 2019).
Implementation Resource Center,9 developed by the Center for Health Care Strategies; and other initiatives (APA and AAP, 2017; APA Task Force on Childhood Poverty, 2013). AAP has recommended regular screening for precipitants of toxic stress (Garner et al., 2012), and several professional organizations have compiled tools and resources to support clinicians in screening for social determinants (including risk factors for toxic stress), maternal depression, and early child development, such as the AAP Screening & Technical Assistance Resource Center and the American Academy of Family Physicians’s Center for Diversity and Health Equity (AAP, 2010; Gleason et al., 2016; Sege and Amaya-Jackson, 2017).10 Many other professional organizations are also issuing similar statements and recommendations; for example, the American Heart Association has called for upstream identification and mitigation of ACEs as a risk factor for cardiometabolic disease (NASEM, 2015; Suglia et al., 2018).
As the science advances regarding contributors to child health equity, new measures that capture the SDOH, including indicators of cumulative adversity and family issues that may impact health and development, have become available. The development of these measures is well under way, addressing such issues as household hunger, lack of money for utilities, difficulty finding jobs, need for child care, or housing problems (AAP, n.d.-b; Arthur et al., 2018; Center for Youth Wellness, n.d.; Ellis, 2001; Garg et al., 2015; Gottlieb et al., 2016). The substantial increased attention to screening and identification of the SDOH and adversity in early childhood has led to much consideration of how child and family health care services might prioritize screening centered on the SDOH. However, many different screening tools exist for the SDOH, with little consensus or guidelines on which ones are most appropriate or effective in different health care settings or contexts (Morone, 2017; Pai et al., 2016). Early studies show promising results with screening and intervention, and most of this work has been done in primary care practices, especially those that care for children and families (Angier et al., 2019b; Bazemore et al., 2016; Cottrell et al., 2018; DeVoe et al., 2016). There are a number of scientists actively engaged in building the evidence for SDOH screening and referral (e.g., which tools to use, how to screen, when to screen, how to incorporate technology). Providers will typically screen more when they can refer to programs that can address child and family needs. Where resources are limited, they are less likely to try to identify problems (Garg et al., 2016).
9 For more information, see https://www.chcs.org/resource/trauma-informed-care-implementation-resource-center (accessed July 17, 2019).
10 For more information on the American Academy of Family Physicians (AAFP) Center for Diversity and Health Equity, see https://www.aafp.org/patient-care/social-determinants-ofhealth/everyone-project/cdhe.html (accessed April 29, 2019). For more information on AAFP’s “EveryONE Project” to advance health equity in every community, see https://www.aafp.org/patient-care/social-determinants-of-health/everyone-project.html (accessed April 29, 2019).
With the increased recognition of the need to expand risk assessment for ACEs, the development of evidence-based, effective strategies for early and continuing assessments of ACEs and other social and environmental determinants will be a key ingredient in transforming the delivery and measurement of preconception, prenatal, and pediatric care. In addition, there is an urgent need to develop biomedical measures to detect and treat toxic stress.
Interest has grown in measuring broader outcomes that may reflect more than health care, such as school readiness at age 5 (Jones et al., 2015) or a new composite measure of being healthy and ready to learn (Child Trends, 2018; Ghandour et al., 2018). These broader measures recognize the importance of cross-sector collaboration to keep children healthy and the health sector’s role in helping children and their families access other needed resources (housing, food, and other supports) to help improve these outcomes.
As new metrics are developed, there is growing recognition that quality measurement is multidimensional and can be impacted by the clinical and social complexity of patients, families, and populations. For example, providers caring for patient populations in at-risk contexts are sometimes held accountable for achieving similar gains in quality metrics as providers in affluent communities without adjustment for patient complexity, putting them at risk for financial loss. Misaligned financial incentives can perpetuate disparities in health care access for underserved populations and fail to recognize quality initiatives that are reducing disparities (or exacerbating them) for certain subgroups if all members of the population are not starting at the same baseline or improving at the same rate. Efforts are currently under way to create adequate adjustments for traditional measures (NCQA, n.d.), although developing adjustments for diverse child populations has been difficult (Kuhlthau et al., 2005).
Enhanced Workforce Education and Training
Workforce development and training is another important strategy for improving the quality of health care. The increased attention to identifying and addressing social, economic, and environmental factors adversely impacting the health of children and families has led to enhanced curricula in the training programs for child and family health care providers. These additional components strengthen the emphasis on learning about the social and community aspects of care for patients and families, implicit bias and unequal treatment, and how to more effectively collaborate with community organizations to improve care and outcomes. This education variably addresses adversity, biases, and disparities, with increasing attention to such issues as food and housing insecurity and the importance of screening for ACEs and recognizing microaggressions.
Advancing health equity requires sustained commitment and resources to increase the diversity and representativeness of our health care workforce. The next generation of health care providers also needs to be better equipped with knowledge, skills, and tools to address MBH issues, ameliorate toxic stress, and provide TIC. This training requires explicit curricula on how to recognize and eliminate implicit bias and unequal treatment in health care. The future workforce needs to develop competencies in team-based care, working across disciplines and sectors to tackle the social and environmental determinants of health.
Transforming the health care system to provide culturally competent care is critical to advancing health equity. It is crucial that the health care workforce receive education and training in cultural competence. Betancourt et al. (2003) define a culturally competent health care system as “one that acknowledges and incorporates—at all levels—the importance of culture, assessment of cross-cultural relations, vigilance toward the dynamics that result from cultural differences, expansion of cultural knowledge, and adaptation of services to meet culturally unique needs” (Betancourt et al., 2003, p. 294). The importance of culturally competent care is also relevant to efforts to increase patient- and family-centered care, as “cultural competence enhances the ability of health systems and providers to address individual patients’ preferences and goals” (Saha et al., 2008). The wide diversity of household backgrounds—cultural, racial, ethnic, and linguistic—and the expected demographic changes that will result in successively more diverse future generations make it important that the health care system have the capacity to understand and respond to cultural variations in health practices and understanding (see Box 5-3 on the role of doulas and Box 5-4 on the role of nurse-midwives and midwives in prenatal and postnatal care and culturally appropriate care). Although more providers entering the workforce have had cultural training and speak languages other than English than a generation ago, many households still face difficulties accessing culturally responsive and linguistically appropriate care. Access to such subspecialty care may be particularly challenging, especially for diagnostic and long-term care services that address cultural and language needs. For example, young children with ASD often need specialized therapists who work intensively on communication with the child and between the child and family. A Spanish-speaking family, however, can find it difficult to identify a Spanish-speaking therapist (Dabney et al., 2015).
Ensuring equity calls for strategies to diminish cultural and linguistic barriers through training and increased recruitment of health care providers from culturally diverse communities. It also requires explicit training on eliminating implicit bias and unequal treatment in health care. Unequal preconception, prenatal, and pediatric care based on race, ethnicity, and SES has been well documented (Brett et al., 1994; Kogan et al., 1994;
Kotelchuck et al., 1997). In a randomized trial of 524 providers who were shown videos depicting patients of varying sociodemographic characteristics, providers were more likely to recommend levonorgestrel intrauterine contraception for low-SES Latina and African American women than low-SES white women (Dehlendorf et al., 2010). Patients from low-SES backgrounds were judged to be significantly more likely than patients from high-SES backgrounds to have a sexually transmitted infection and/or an unintended pregnancy and were also judged to be less knowledgeable. An analysis of data from the National Maternal and Infant Health Survey demonstrated that black women were less likely than white women to receive advice from their prenatal care providers about smoking cessation and alcohol use (Kogan et al., 1994). Stereotyping and implicit bias on the part of health care providers are factors that may play a role (ACOG, 2015). Advancing health equity in birth and child health outcomes will require addressing implicit bias and unequal treatment in health care (see Chapters 7 and 8 for more on implicit bias training).
Most existing training programs offer some, albeit limited, exposure to training in cultural diversity and how culture influences health care and behaviors. In a few settings, clinicians in training learn skills in team care, although integrated training programs are rare. Case Western Reserve University is starting a new program where medical students, nursing students, and others will train together in a new multischool training and research building. All of these areas (cultural and linguistic diversity, the SDOH, MBH, and team experience) merit increased attention in medical training in general and in pediatrics specifically.
There is increased recognition that health care providers need to be not only well versed in medical interventions to treat illness but effective advocates in addressing the broader factors contributing to unequal access to services and treatment and impacting efforts to achieve health equity.
Improving Quality of Care
Based on its review of the evidence the committee concludes:
To improve the quality of care provided in the preconception through early childhood periods, the committee recommends:
- collaboratives, should expand the use of continuous quality improvement, learning communities, payment for performance, and other strategies to enhance accountability; and
- Health care–related workforce development entities should expand efforts to increase diversity, inclusion, and equity in the health care workforce, including diversity-intensive outreach, mentoring, networking, and leadership development for underrepresented faculty and trainees.
Workforce development (bullet 3) will need to be addressed by several entities, including the Accreditation Council for Graduate Medical Education and specialty boards, professional schools, training programs, funders of graduate education in health professions (CMS, HRSA, and others), and teaching hospitals, including children’s hospitals. Metrics for accountability include
- Social determinants and risk measures: Measures that reflect whether risks were identified early and whether families received needed help, with key drivers of health inequities that lie beyond traditional clinical purview but profoundly impact their health, such as housing instability, food security, and exposure to adversity or trauma.
- Cross-sector developmental measures: Measures that move beyond common indicators of child development, such as immunizations and management of acute infections or common chronic conditions, to address an expanded set of clinical indicators crucial for children and caretakers, including MBH. Measures should reflect healthy life course development, such as language at age 3, school readiness at age 5, reading proficiency at age 8, and high school graduation rates, as well as indicators of concern (need for special education, substance use, executive functioning, major behavior disorders).
- Disparities as explicit measurement domains: Measures that hold providers accountable not just for delivering services but also for improving outcomes and closing gaps in outcomes among key populations or subgroups. Quality measures should be adjusted for the social and clinical complexity of patient populations.
Most preconception, prenatal, postpartum, and pediatric care is delivered through face-to-face office visits. For many families, but especially low-income families, this often requires taking unpaid leave from work, arranging child care and transportation, and waiting an hour or two for a 5- to 30-minute visit (Lewis et al., 2017). Preconception care is usually
one short visit, with no consistency in what is accomplished during that visit, and a large percentage of families do not even receive this minimal level of care (Poels et al., 2016). Current prenatal care guidelines continue to recommend 14 or more prenatal visits during pregnancy, despite a lack of evidence supporting this number. Most visits consist of a spot blood pressure check and urine dip, a cursory auscultation of fetal heart tone and fundal height measurement, and a hurried conversation with a provider who, despite best intentions, often does not have sufficient time or training to educate patients about self-care let alone address their psychosocial concerns or occupational and environmental exposures (Lu, 2019). Similarly, postpartum care is usually one short visit (two after cesarean delivery), which consists of a cursory review of problems, a pelvic exam, and an often hurried discussion of contraceptive options, if the latter happens at all. Pediatric care also focuses on assessment of common issues, along with immunizations and other preventive services, in short office visits with limited time for extensive screening and counseling. Nonetheless, the multiple scheduled health supervision visits during the prenatal and early childhood periods can serve to connect families with trusted health advisors. For young children who have frequent pediatric care visits in the first years of life, health care provides a main entry point to health and many other services that can support the promotion of health for preschool children and their families (Garg et al., 2015; Patient-Centered Primary Care Collaborative, n.d.; Stille et al., 2010). In most communities, the current configuration of services does not take full advantage of this opportunity for maximizing collaborations across sectors and implementing concurrent interventions to strengthen children and families.
Concerns regarding increasing health care costs, health care provider availability, dissatisfaction with wait times, and the minimal opportunity for education and support associated with the individual care model have given rise to interest in alternative models of care. For children, a system of care designed to prevent and treat common infectious diseases faces a population whose health reflects infections less than noninfectious chronic conditions. Growing epidemics of nonfatal chronic conditions, especially MBH conditions (Halfon et al., 2012; Houtrow et al., 2014), much greater understanding of the SDOH, increasing diversity in the sociocultural makeup of the U.S. population, and the tremendous growth in the science of early childhood development all call for new strategies and structures for delivering and financing preconception, prenatal, and pediatric care, including efforts to address inequities (Perrin and Dewitt, 2011). Social, economic, and environmental determinants of health generally affect the health of children and families more than usual medical treatments, and traditional ways of delivering health care have relatively limited impact on early childhood growth, development, and health.
Some innovative ideas being tested in prenatal and well-baby care are group visits, multidisciplinary teams, strategies to link health care with other community resources, and increased use of new technologies (see section on the use of technology below).
Group visits and innovative designs that bring patients with similar needs together for health care encounters (face to face or virtually) increase the time available for the educational component of the encounter, improve efficiency, and reduce repetition (ACOG, 2018a). The group visit model is being tested for prenatal care because group visits are designed to enhance patient education while providing opportunities for social support and retaining the risk screening and physical assessment of individual care (ACOG, 2018a). In some settings, the groups continue meeting for postpartum and/or newborn care sessions. This model is especially promising in the reconceptualization of postpartum care, which would move away from a single clinical encounter toward more comprehensive, ongoing support for the postpartum transition.
While initial observational studies (Thielen, 2012) and a large RCT (Ickovics et al., 2007) found significant improvement in perinatal outcomes in group visit models, a more recent Cochrane review (Catling et al., 2015) and a meta-analysis of 10 observational studies and 4 RCTs (Carter et al., 2016) found no significant difference in preterm birth, LBW, breastfeeding, or neonatal intensive care unit admissions. However, it should be noted that while there was no overall difference in outcomes between women in traditional and group prenatal care, black women in group prenatal care showed a 41 percent reduction in preterm births in the largest RCT (Ickovics et al., 2007) and the meta-analysis, respectively. CenteringPregnancy is a model of group prenatal care that has demonstrated some promising but mixed findings in improving maternal and birth outcomes, including decreasing disparities by race and ethnicity (see Box 5-5). CenteringParenting is a similar innovative model of group postpartum care that brings together a cohort of six to seven mother–infant dyads for 1 year postpartum (Bloomfield and Rising, 2013); its impact on outcomes remains to be established.
Father and Partner Involvement
As discussed in Chapter 4, fathers can play an important role in their children’s development, and the health system could do better in engaging fathers’ involvement. Several authors have suggested innovative approaches to strengthen engagement through preconception
(Kotelchuck and Lu, 2017), prenatal (CPIPO, 2010), postpartum, and pediatric care (Yogman and Garfield, 2016), though evidence of effectiveness is still lacking. Kotelchuck and Lu (2017) proposed a research agenda for advancing the father’s role in preconception health, focusing on three priority domains: increasing the basic epidemiology and risk factor knowledge base; implementing and evaluating men’s preconception health/fatherhood interventions (addressing clinical health care, psychological resiliency/maturation, and the SDOH); and fostering more fatherhood health policy and advocacy research. The Commission on Paternal Involvement in Pregnancy Outcomes (CPIPO) proposed 40 research, practice, and policy recommendations for strengthening fathers’ engagement, including the development of “father-friendly” hospital settings, practices, and policies (CPIPO, 2010). CPIPO also called out the importance of developing more effective methods of recruitment and retention of men in communities with high levels of poor pregnancy outcomes in research. Similarly, Yogman and Garfield (2016) pointed out the important role of
child health providers in supporting and encouraging father involvement, with special attention to fathers’ involvement across childhood ages and the influence of fathers’ physical and mental health on their children. Given the growing diversity of families, similar attention is needed to engaging partners of all types across the health system.
Another growing innovation is the sharp increase in multidisciplinary teams delivering care to children and families, including team members from sectors other than health care. Teams in primary care and obstetrical care settings take diverse forms, but they all reflect a dedicated move from care provided by physicians alone to much greater involvement of nonphysician providers in ongoing care (Halfon et al., 2014). Team care has grown from early models of physician–nurse practitioner collaboration dating back half a century. Many subspecialty programs, for adults and children,
have long had teams providing care, with substantial documentation of their effectiveness (Katkin et al., 2017; Lahiri et al., 2016). Typical elements of a primary care team address (1) chronic care management (especially for the high-prevalence conditions other than mental health)—often with a nurse or nurse practitioner having main responsibilities, (2) mental and behavioral health—often through a colocated mental health professional (see below), (3) linking families with community resources (e.g., through a staff member knowledgeable about community benefits and resources or through medical–legal partnerships [MLPs]), and (4) helping families assess readiness for becoming parents and building their child-raising skills (e.g., programs to plan for parenthood, parenting programs in health care offices, connecting with home visiting programs, or encouraging families to read to children at an early age). Over the past few decades, nurses have played increasingly broad roles, including prevention and care management. Few teams include all these components, but the growth of team care has addressed all of them in different models.
Models that incorporate evidence supporting teams in health care settings to develop multidisciplinary care coordination programs involving families, social workers, paraprofessionals or peer workers, and community partners have evolved over time to help families of high-risk children be more proactive at managing health risks (Van Cleave et al., 2015). Programs such as the Parent-focused Redesign for Encounters, Newborns to Toddlers (PARENT) have used health educator coaches for parents to deliver well-child care that incorporates social risk screening and referral, with developmental and behavioral assessments (Coker et al., 2016). Efforts to use team-based care (coupled with telehealth mechanisms) in part reflect the recognition that such changes will help to more effectively address the many factors contributing to the health of patients and communities. These changes recognize that enhancing health care practices with personnel who are knowledgeable and skillful in helping families access a breadth of community services will address disparities.
Integrating mental health and behavioral health services into primary care is a widespread innovation that usually involves having a mental health professional (e.g., a master’s level psychologist, social worker, or psychiatric nurse specialist) colocated in the practice (Ader et al., 2015; Stancin and Perrin, 2014; Team Up for Children, n.d.). One such program embeds mental health workers in several community health center pediatric practices so that they can see patients jointly or transfer them easily and immediately.11 These personnel both see patients directly and help to train the primary care practitioners to hone their own mental health skills. In another model that has experienced much growth (now in more than 30 states), primary
care clinicians can access telephone backup services that support their in-office care of mental health problems (Sarvet et al., 2010; Straus and Sarvet, 2014). Occasionally, backup providers will see patients directly for one to two visits, although the majority of services provided are either directly to the primary care provider or by referral to community resources for ongoing mental health care (e.g., community cognitive behavioral therapy providers).12 Most studies of programs that integrate behavioral health care services into primary care to address the increased prevalence of mental health diagnoses, early childhood developmental conditions, and substance use disorders in families have shown substantial promise (AHRQ, n.d.-b; Balasubramanian et al., 2017; Kwan and Nease, 2013).
Embedded programs that directly address the SDOH focus on having onsite professional social workers or other staff who provide in-person services or navigation to families (Fierman et al., 2016) or who help families find needed community resources. Several established programs do this kind of work, including the following (see also Box 5-6 for information on another initiative, Pediatrics Supporting Parents):
- The Health Leads program uses patient advocates to meet with families, guide them to community resources, and integrate SDOH care into the routines of clinical care (Garg et al., 2012). It has been shown to improve child health outcomes in a randomized trial (Gottlieb et al., 2016).
- Reach Out and Read is a practic-embedded program in pediatric care settings encouraging parent–child interaction and literacy development and has been shown to result in higher language proficiency in at-risk children (Mendelsohn et al., 2001).
- The PARENT program uses coaches for parents to expand the capacity of providers to address family social risks. An RCT of the program showed improvements in use of developmental screening and other preventive care and reduced emergency department (ED) visits early in life (Coker et al., 2016).
- HealthySteps (with sites in more than 20 states; Washington, DC; and Puerto Rico [Zero to Three, n.d.-a]) combines practice-based services using early child educators or nurses with early childhood training with community linkages focused on newborn care, safety, and developmental issues. This program has shown some evidence for impacts on parent–child communication (Minkovitz et al., 2007) (see Box 5-8 for more on HealthySteps).
- MLPs assist families with the legal challenges that often go hand-in-hand with unmet needs related to social determinants and have been shown to improve subjective well-being and positive
12 The 21st Century Cures Act and expansion of phone backup programs.
- It is designed to help states and communities leverage existing resources to identify children in at-risk environments, link families to community-based services, and help families support healthy development of their children, including through child health provider outreach (Help Me Grow, 2017).
- Filming Interactions to Nurture Development (FIND) is a video coaching program that aims to strengthen positive interactions between caregivers and children to reinforce developmentally supportive interactions, or what is known as “serve and return.” Early evaluation studies show participation in the FIND Fathers project was associated with improvements in parenting stress, father involvement, and child behavior problems; other evaluations are ongoing (Center on the Developing Child at Harvard University, n.d.).
The growth of teams also supports expanded attention to social, economic, and environmental determinants of health among children and families. Team-based care helps practices encourage families to share information more effectively, as different team members focus on different aspects of a family’s health and health determinants. Strong community knowledge and linkages help these efforts succeed, and some practices embed community health workers and other laypeople with lived experience, community expertise, and inherent trust among community members. Here too the value of team-based community-oriented care has many advantages over traditional physician-centered practice. Community health workers know community resources (e.g., housing, food, employment) and can assist families in getting the help they need (e.g., resources to find improved housing for a child with asthma who wheezes because of mold in her apartment instead of repeated ED visits for nebulizer treatments).
Enhanced Services to Identify and Address Social, Economic, and Environmental Determinants of Health
There has been increased recognition of the impact of adverse social, economic, and environmental determinants on health outcomes over the past several decades. Federal and state public health efforts have moved to enhance care to better identify and address these factors (Lu et al., 2010). For prenatal care, enhanced care models have been designed to deliver coordinated, augmented, enabling, enriched, comprehensive, or “wraparound” prenatal care services—particularly for low-income populations. Enhanced prenatal care typically refers to routine prenatal care visits combined with ancillary services that may entail outreach efforts, counseling about WIC, case management, social work, psychosocial counseling,
social support, health promotion/education, transportation, home visiting, and follow-up services to facilitate the ongoing use of the prenatal services offered (Alexander and Kotelchuck, 2001). The Comprehensive Perinatal Service Program enhances prenatal care with nutrition counseling, social services, and health education (Korenbrot et al., 1995). Most federally funded Healthy Start programs enhance prenatal care with care coordination, case management, and home visiting (Badura et al., 2008). In his systematic review of three types of enhanced prenatal care—home visiting programs, comprehensive care programs, and preterm prevention programs—Fiscella (1995) failed to find conclusive evidence of effectiveness of enhanced prenatal care for preventing adverse birth outcomes. It should be noted, however, that Fiscella examined the impact of enhanced prenatal care on only three immediate birth outcomes—perinatal death, LBW, and preterm birth; the impact of enhanced prenatal care on other short- and long-term health outcomes for children and families remains largely unexplored. A study of the Illinois Family Case Management program, another enhanced prenatal care program, did find that participation resulted in a lower LBW rate (Silva et al., 2006).
Health care providers have explored three basic approaches to the challenge of meeting social needs outside of their practices: (1) home visiting programs connected to the practice, (2) screening for risks and referring to community programs, and (3) community-level interventions.
Home Visiting Programs Connected to the Practice
Home visiting has a long history of effective programs for young families (based on early experiments in Ithaca, New York, and Hawaii); nurses or other trained personnel make home visits for young families, in some cases during pregnancy, and in all cases in the first few years of a child’s life. For a more detailed discussion of home visiting, see Chapter 4. Some programs are closely integrated with health care providers; others work independently but share information. The Nurse-Family Partnership program has shown evidence of reducing child abuse and neglect (Macmillan et al., 2009) with home visiting, for example. Some of the targeted programs that focus on specific needs, such as child abuse, child neglect, or LBW babies, have improved health outcomes in high-risk families (Avellar and Supplee, 2013; Radcliffe et al., 2013; Rushton et al., 2015). In the past few years, Congress has supported growth in home visiting programs by allocating new funds to allow for expanding the programs and the households covered. For an example of a community-based nurse home visiting program that has demonstrated promising findings in improving the health and well-being of children and their families, see Box 5-7.
Screening in the Practice and Referral to a Community Partner
WE CARE, a program based in pediatric primary care and serving low-income families, combines a screening tool and referrals to community resources for at-risk families who want assistance with social needs; the results from RCTs showed that families in the program were more likely to connect to social determinants resources, had fewer unaddressed needs, were more likely to be employed, and were less likely to live in a shelter at follow-up compared to those not in the program (Garg et al., 2007, 2015). Other pediatric-based “screen and refer” programs, relying on either trained family specialists or volunteer community navigators, have shown similarly promising impacts on outcomes such as connection to social needs, increased immunization rates, and reduced early life ED use in randomized studies (Gottlieb et al., 2016; Sege et al., 2015). A range of more focused pediatric-based programs addressing specific social needs through screening and intervention have also shown promising results in high-quality studies, including programs focused on improving habitability for children with asthma (Krieger et al., 2005), the Safe Environment for Every Kid program focused on reducing intrafamily stress/violence and improving food security (Dubowitz et al., 2011, 2012; Feigelman et al., 2011), clinic-based referrals to Head Start (Silverstein et al., 2004), and StreetCred, which helps families get benefits they are eligible for (e.g., nutrition programs, Earned Income Tax Credit, SSI) (Marcil et al., 2018). Programs have also successfully deployed community health workers to do home assessments and education, and results indicated reduced asthma triggers among children (Campbell et al., 2015; Williams et al., 2006). Other community collaboration models compile resource directories and connect people to publicly available benefits, including Temporary Assistance for Needy Families or the Supplemental Nutrition Assistance Program, as well as to community resources or private programs that can assist at-risk families (Henize et al., 2015).
Primary care providers have worked in this space for some time, with a growing body of evidence around effective programs and interventions. Several state Medicaid agencies have also begun to test promising models to incentivize providers in their efforts to address SDOH (including early detection of adversity and trauma experienced by children and their caregivers), greater integration with other community providers, and MBH integration (Van Buren, 2018). These innovative efforts together promise ways to strengthen preconception, prenatal, and pediatric care, help it move to team care and improve use of new technologies, and strengthen integration with other community services to enhance child health and well-being. North Carolina has developed an ambitious Early Childhood Action Plan, which has goals such as healthy children who are safe and nurtured, learning, and ready to succeed (NCDHHS, n.d.).
The plan builds on the science of early childhood and brain development and aims to address health equity. New York’s First Thousand Days program includes statewide early home visiting, expansion of the CenteringPregnancy program (see Box 5-5), a requirement that managed care plans must have a child-specific quality agenda, and data system development to enhance cross-sector collaboration (United Hospital Fund, 2018).
Lastly, addressing the SDOH needs to encompass improved, collaborative systems for addressing medical and psychosocial risk factors at not only the individual child/family level but also the community level. Community-based parent support programs can provide resources through parent and child play groups, parenting information and support classes, and connecting families to medical or child care services (Trivette and Dunst, 2014). (For more information on supports for parents and caregivers, see Chapter 4.) The goal of these programs is to improve the health, well-being, and development of children by improving parents’ caregiving skills and providing parents with adequate social supports and services (Goodson, 2014). Such programs are most effective when they are “family-centered as opposed to professionally-centered” and “capacity-building as opposed to dependency forming” (Trivette and Dunst, 2014). In pediatrics, family-centered care is care that is “based on the understanding that the family is the child’s primary source of strength and support and that the child’s and family’s perspectives and information are important in clinical decision making” (AAP Committee on Hospital Care, 2003, p. 691). Family-centered care can lead to improved child health and behavioral outcomes (Dunst and Trivette, 2009; Dunst et al., 2007; Kuo et al., 2012), and it is vital that community-based programs connect families to medical services where family-centered care is standard.
The 2016 National Academies report Parenting Matters: Supporting Parents of Children Ages 0–8 describes specific elements of effective programs, which include (1) parents as partners, (2) tailoring interventions to parent and child needs, (3) service integration and interagency collaborative care, (4) peer support, (5) trauma-informed services, (6) cultural relevance, and (7) inclusion of fathers (NASEM, 2016). HealthySteps is a community-based pediatric primary care model that prioritizes the role of parents and caregivers as active participants in the care of their children (see Box 5-8 for more information on HealthySteps). Several initiatives have effectively coordinated health, social services, family support, and educational services, such as the Harlem Children’s Zone (Harlem Children’s Zone, n.d.) and the multisite Best Babies Zone initiative (Best Babies Zone, n.d.). A 2017 National Academies report, Communities in
Action: Pathways to Health Equity, documents several such place-based, community-level initiatives.
In addition to knowing the community to better direct patients to resources, health care institutions can treat surrounding neighborhoods as “patients” and intervene more directly in the SDOH. In one such case study, the Healthy Neighborhoods, Healthy Families Initiative, a pediatric center invested in a multifaceted housing intervention in the
surrounding neighborhood and significantly improved vacancy rates, though the health impacts on children in the area are still being evaluated (Kelleher et al., 2018). Similarly, a community health center in Wisconsin partnered with urban planners to integrate health into sustainable land-use planning practices in an effort to shape overall community health outcomes (McAvoy et al., 2004). Health systems have also begun to participate in larger cross-sector efforts and partnerships predicated on the principles of collective impact, such as Accountable Communities of Health (ACH), which bring together a wide range of partners from across sectors to collectively address the SDOH. These efforts are nascent, however, and high-quality evidence on the health impacts of the ACH model or similar initiatives is not yet available. CMS recently released a request for proposals to address similar opportunities at the child health level, with a strong emphasis on MBH and building community coalitions to improve outcomes based on social determinants criteria (CMS, 2019).
Another promising example is the redesign of the federal Healthy Start program in 2015 to place greater emphasis on improving women’s health before and between pregnancies and across the life course, strengthening families, increasing father engagement, and addressing the SDOH through the collective impact model (whereby Healthy Start grantees serve as the backbone organizations in facilitating coordination and collaboration with social services, housing, economic and community development, and other nonhealth sectors to prevent infant mortality in the community). Results from more rigorous evaluation of the Healthy Start program are expected to be available in 2019 (NICHQ, n.d.).
Embracing New Technologies
Technological advances may help to transform the model of brief, episodic visits in a busy practice, especially in underresourced settings, by improving communication and care in several ways. A health care system redesign that better leverages eHealth technologies and social networking in innovative ways can enable more effective health promotion than current short visits. With many technological opportunities emerging to implement such a redesign, an important consideration is that machine learning algorithms may suffer from the same biases reflected in the data on which they are built, such that their use in health care may inadvertently perpetuate and even exacerbate existing health disparities (Char et al., 2018; Gianfrancesco et al., 2018). Research is needed to identify strategies to minimize such biases as new technologies are implemented more widely in health care and other sectors (Turner Lee, 2018).
Increasingly, health care providers are experimenting with telehealth strategies to augment their services and make them more accessible and convenient for families (Burke et al., 2015). Most used and studied in the
area of providing mental health services remotely, telehealth has expanded substantially in the management of many chronic diseases of children and adults. New technologies allow better home and community monitoring of chronic disease and assessing symptoms and clinical signs over phone and video. Increased use of technological innovations might also improve access before and during pregnancy (Lu et al., 2010). Telehealth has been proposed as a way to help overcome many of the access barriers described earlier; women could be connected to their providers or specialists at anytime from anywhere. In addition, mHealth could make health promotion more accessible using simple mobile phone functions. Instead of bringing children and families to care, future research, practice, and policy initiatives to increase access should work on leveraging technological innovations to bring care to people in their homes and communities.
Technological innovations, data sciences, and design thinking could be leveraged to redesign care around the needs of children and families and not just provider or clinic schedules. Technologies such as wearables, sensors, and lab-on-a-chip hold potential if they are proven to reliably and more continuously collect high-quality data that lead to improved care, better patient experiences, and more equitable health outcomes. Such data, collected from the comfort of a woman’s own home throughout her pregnancy, may include not only information on blood pressure or urine protein but also nutrition and physical activities, stress and sleep, and occupational, environmental, and other exposures that affect pregnancy outcomes and developmental origins of health and disease. With remote home monitoring, it is possible to continuously transmit data to the Cloud, which, with the aid of artificial intelligence and machine learning, could be used to improve predictive analytics. For preconception and prenatal care, these enhanced data might help triage women to different levels and components of care (e.g., routine follow-up, a call from a health educator, a home visitor, or an urgent appointment with a specialist). Instead of adhering to a uniform schedule, this approach might enable the frequency and content of preconception and prenatal visits to be determined by the specific changing needs and risks of each woman. Much work in childhood chronic disease, especially ASD and inflammatory bowel disease, similarly uses remote data to inform the need for office visits, rather than relying on routine follow-up periods. Linking these data with genomic, proteomic, metabolomic, psychosocial, and environmental data might help create a more precise risk profile that could inform the design of more personalized and precise interventions.
New health care technologies can also enhance other communications between health care providers and their patients and markedly change the character and components of regular care if these are high quality and well focused on characteristics most valued by households (Olson et al., 2018). Texting has been used to encourage healthy behaviors or advise
on routine care (e.g., developmentally specific infant care advice, such as text4baby) (Evans et al., 2012). Texting has also improved low-income mothers’ adherence to immunizations for their children (Hofstetter et al., 2015; Stockwell et al., 2012).
In addition, new and emerging technologies could play an important role in decreasing health inequities. Digital tools that leverage artificial intelligence and machine learning have the capacity to better identify social risk factors and improve systems of referral and follow-up for patients when used with care and appropriate data sources (Padarthy et al., 2019). Advanced technological systems can help collect social risk screening data without relying so heavily on the point of care encounter, such as using patient-accessible electronic health records to pre-collect screening data in advance of clinical encounters. Indeed, not all screening needs to take place in clinical offices or at visits at all—electronic practice gateways allow families to respond to questionnaires before or after visits, and texting can help encourage their participation. Head Start and other early childhood sites can also screen, and data sharing across communities can expedite care and response. In addition to ambulatory settings, some health systems have also implemented screening within EDs and trauma centers, especially around issues of violence and trauma, but evidence on the effectiveness of screening within those settings is still preliminary (Juillard et al., 2016; Smith et al., 2013).
Health information technology (IT) can be used in a variety of other ways to augment health care services (e.g., promote patient education, assist with care coordination). Health IT in health care settings can also be used to support provider decision making and reduce errors. For example, reminders generated by electronic medical records can be used to encourage prenatal providers to prescribe progesterone to eligible patients with a documented history of spontaneous preterm delivery, to tell pediatric care providers about overdue immunizations, or to prompt follow-up on abnormal lab results, which can sometimes be missed in busy, understaffed clinics, especially in underresourced communities. Health education materials are accessible on the Internet and through smartphone apps. For example, pregnant patients can find information about self-care on websites such as the U.S. Department of Agriculture’s ChooseMyPlate.gov,13 which provides useful tools for nutritional self-assessment and education to pregnant women. Parents can access a variety of parenting resources and guidance regarding health and wellness for early childhood. Health IT can also help link clients to needed services, such as the Healthy City website,14 which maps community services in
13 For more information, see https://www.choosemyplate.gov/nutritional-needs-during pregnancy (accessed May 9, 2019).
Los Angeles County down to the zip code and Census tract level using geographic information system technology.
Financing to Support Innovation
Payment arrangements for most health care services, from both public and private (mainly employer-sponsored health insurance) sources, rely on fee-for-service mechanisms where payment reflects the number of services provided (e.g., health supervision visits, acute care visits, vaccinations) and covers only specified services. Fee-for-service arrangements provide few incentives for many of the changes that are critical for preparing health care providers to better deliver services to meet the needs of children, youth, and families, especially attention to mental/behavioral health, addressing the SDOH, building community links, and incorporating telehealth. Traditional payment focuses on services, rather than on improving the health of populations. While providers recognize the many factors influencing health in prenatal and early childhood, traditional payment strategies maximize the numbers of patients per hour, often resulting in less time spent with each patient, without providing support for the longer visits needed by some households (e.g., those facing housing or economic insecurity). Many health providers are already experimenting with new organizational structures to address changing needs and better respond to the main influences on health outcomes and well-being. Practices increasingly face the need to manage chronic conditions, address MBH, respond to cultural and linguistic diversity, and help with poverty and other SDOH, including efforts to address inequities in care and outcomes. These views reflect growing attention to child and family health in a holistic way. Health care providers are embracing team-based care models and new technologies (Katkin et al., 2017). Yet, current financing models prevent many health care providers from practicing in multidisciplinary teams; integrating health services with other community services; placing more emphasis on population health strategies; using technologies to enhance communication, assess risk, and extend care; and tailoring services to address equity and disparities.
Optimizing care and support for postpartum families will also require policy changes. Presently, many insurers bundle reimbursement for prenatal care, delivery, and a single postpartum visit into one global fee, creating a disincentive for providers to provide comprehensive postpartum care or see patients more than once. Many women lose their pregnancy-related Medicaid coverage at 60 days postpartum. Payers often do not recognize the care provided to parents in pediatric and family medicine care settings. Thus, changes in the scope of postpartum care would require changes to reimbursement policies that support postpartum care
as an ongoing process, rather than an isolated visit, such as unbundling from global obstetrics payment, pay-for-performance, and extension of Medicaid coverage for at least 12 months postpartum.
Public and private payers in the past few years have shown interest in moving to alternative payment mechanisms, where providers increasingly take (financial) responsibility for a specified population. These arrangements can provide very different incentives for the organization and provision of health care services. For example, they allow more care to take place out of office through the expanded use of telemedicine and lowering use of high-cost services of limited value (Berwick et al., 2008; Dzau et al., 2017; Wong et al., 2018). The growth of accountable care organizations (ACOs) follows this interest in changing incentives to improve care. Several children’s hospitals have developed ACOs (Makni et al., 2015; Perrin et al., 2017), although most of the growth in ACOs has come from large multispecialty programs with a main emphasis on practice transformation and cost savings for older populations.
As noted previously, Medicaid plays a major role in insuring children, youth, and pregnant women, and, increasingly, young parents. Its success and persistence are critical to the health of these populations, and Medicaid program enhancements generally implementing the changes in organization and financing described in this chapter will improve health and health inequities. As also noted above, children’s hospitals (including organized children’s health programs in general hospitals) provide most of the subspecialty care for children and youth with more complex and less common health conditions. Insofar as many children have public health insurance—with even higher rates among children with chronic health conditions—children’s hospitals rely substantially on public financing. This reliance, however, puts these institutions at financial risk, as Medicaid generally pays much less than Medicare or private payers do for the same service. Although rates vary greatly among the states, on average, Medicaid pays at about two-thirds of the Medicare rates (Biener and Selden, 2017).
Substantial moves to capitated or population health payments will greatly enhance the needed changes in health care arrangements. Here, too, several state Medicaid programs have innovated in their programs for children and youth. New York has focused on value-based payments, including efforts to define value measures for children and develop incentives to reward value improvements (NY Department of Health, 2017), based in large part on a careful analysis of value-based payment strategies for children (Bailit Health, 2016). Colorado has developed a Healthy Families Checklist, setting standards for Medicaid, strengthening eligibility opportunities for Medicaid, expanding benefits to include care coordination, and changing payment policy to support delivery system
design (Ascend at The Aspen Institute, 2018). Massachusetts has reframed its Medicaid program as an ACO, emphasizing MBH integration, the SDOH, and long-term supports and services (MA Executive Office of HHS, 2017). The committee supports health care payment reform efforts that promote value-based care, tie payment to population health outcomes rather than service delivery, and incentivize strategies that better address prevention and health equity. (See Box 5-9 for more on population health payments.)
Organization and Integration of Health Care Services
Based on its review of the evidence, the committee concludes:
To advance the integration of health care services in an organization, the committee recommends:
Achieving this recommendation requires the following:
- Spread multidisciplinary team-based care models in community settings. Promote the adoption and spread of multigenerational, team-based care models that support patients with a mix of traditional clinical professionals, such as doctors, nurses, social workers, and pharmacists, with mental health professionals, as well as community health workers or peer support specialists. Team activities include chronic disease management, integrated MBH, family support in early childhood, including access to parent training, and referral/connection to needed community services (housing, food, etc.).
- Develop more integrated models for preconception, prenatal, and postpartum care delivery modes. Models and interventions should allow women to engage in a continuum of services on their preferred terms, including culturally and linguistically appropriate service models, multigenerational care, approaches that employ home or community-based service delivery for women who prefer those settings, or programs that use new technologies and work to intentionally incorporate a woman’s existing social support networks into her prenatal and postnatal care plan.
- Adopt and spread integrated, whole-family and family-centered care models. The best models give providers the ability to address the health of individuals and families comprehensively, including clinical health, integrated with MBH and health-related social determinants. Expanded child and family health models include assessment of family strengths and needs and strategies to address them, moving beyond individual care.
- Develop and use new technologies that improve care and improve accessibility. Advances include remote monitoring, as well as technologies to enhance ongoing communication, such as texting, virtual visits, and data sharing.
- Align payment reform with health creation rather than service delivery. Payment should promote value-based care and
- tie payment to population health outcomes rather than service delivery. Payment should incentivize strategies that address health creation and health equity and include comprehensive, coordinated, community-engaged care.
- Develop cross-sector collaboration at systems levels to address the intersection of drivers across the health continuum. Programs should seek collective impact or similar cross-sector efforts, such as ACH and other place-based initiatives, that aim to align health care, public health, social services, housing, education, and other sectors around aligned goals and common strategies. Shared governance structures should promote collaboration, including investment in administrative infrastructure and backbone organizations to manage collaboratives, thereby ensuring the flow of information and funding across sectors, and other strategies for sharing efforts and savings.
Vision: To advance health equity, reduce health disparities, and improve birth and child health outcomes, the committee calls for a health care system that ensures access for all to high-quality health care across the life course. Transformation of preconception, prenatal, postpartum, and pediatric care will address early childhood sensitive and key life periods by including attention to the root causes of poor health (e.g., access to safe housing, high-quality education, food security), early adversity, and equity. The system will respond to the needs of children and their families holistically and through team-based care and by connecting them with community resources and integrating services across the life course. Ensuring appropriate preconception, prenatal, postpartum, and pediatric care will have long-lasting effects on the health and well-being of our nation’s children.
This work should take place within a larger framework of social and reproductive justice and include diverse voices, especially from communities most affected by adverse birth and child health outcomes. To expand the content of preconception to pediatric care to address key drivers of health inequities better, specific actions include
- Recognize the impact of both adverse and enriching experiences across the life course and cumulative effects on health and well-being. Address transitions between care providers and move from disjointed episodic care to an integrated continuum of longitudinal health care designed to optimize health production across the life course.
- Include trauma assessment and response as an integral part of care. Expand practice capabilities to screen for and respond to trauma and early life adversities as part of the standard of care for all families. Advance the biomedical detection and treatment of toxic stress in clinical practice, including during the development of methods for early detection and implementation of evidence-based interventions such as connections to community resources designed to help address the effects of trauma. (See Recommendation 8-2 in Chapter 8 for more on screening and rapid assessment.)
- Change the content of clinical training to include social determinants of health, MBH integration, and early adversity. Expand training, care protocols, and workflows to address the SDOH as a routine part of clinical best practices, especially in early life. To accomplish this, curricula and related training experiences need to
- be expanded to include competency-based training on screening and mitigation of early adversity, providing TIC, addressing the SDOH, and reducing implicit bias and unequal treatment in health care. Progress toward objectives and training outcomes should be benchmarked. (See Recommendation 8-3 in Chapter 8 on TIC.)
- Implement an equitable whole-child, whole-family, multigenerational approach. Expand clinical best practice to address the child and parents in an integrated, whole-family view of health that includes children, parents, and other caregivers. Train clinicians in ways that enhance the equitable delivery of care, including culturally competent caregiving and family-centered care that includes families and caregivers as partners in their own and their children’s care. Clinicians and clinical staff should have ongoing training and accountability in areas of implicit bias and equity in evaluation and treatment.
Applying the science of early development to transform preconception, prenatal, postpartum, and pediatric care has the potential to advance health equity. To better meet the needs of the populations receiving this care, the access, quality, and content of clinical care need to be addressed. This will require the health care system to be an active partner with other sectors and communities who are leading the way to address the root causes of health inequities—the social, economic, environmental, and cultural determinants of health.
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