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14
Public Policies Affected by Preterm Birth

ABSTRACT

Because many public entitlement and benefit programs target minority individuals and individuals of low socioeconomic condition, who are at increased risk of delivering infants preterm, the burden of illness associated with preterm birth falls disproportionately on the public sector. The consequences of preterm birth have implications not only for medical costs but also for a broader range of services and social programs, such as early intervention programs, special education, income support (including the Supplemental Security Income program and Temporary Assistance to Needy Families), Title V Maternal and Child Health Programs, foster care programs, and the juvenile justice system. Little is known about the magnitude of the public burden, aside from the costs associated with medical expenditures for preterm birth paid for by Medicaid. It is not possible to assign dollar costs associated with prematurity to other services and programs because of a lack of data. There may be potential for public policy to reduce the rate of preterm birth and improve the outcomes for children and families through the financing of health care, the organization of health care, improvements in the quality of care, and other social policies. However, effective public policies will require a better understanding of the determinants of preterm birth.



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Preterm Birth: Causes, Consequences, and Prevention 14 Public Policies Affected by Preterm Birth ABSTRACT Because many public entitlement and benefit programs target minority individuals and individuals of low socioeconomic condition, who are at increased risk of delivering infants preterm, the burden of illness associated with preterm birth falls disproportionately on the public sector. The consequences of preterm birth have implications not only for medical costs but also for a broader range of services and social programs, such as early intervention programs, special education, income support (including the Supplemental Security Income program and Temporary Assistance to Needy Families), Title V Maternal and Child Health Programs, foster care programs, and the juvenile justice system. Little is known about the magnitude of the public burden, aside from the costs associated with medical expenditures for preterm birth paid for by Medicaid. It is not possible to assign dollar costs associated with prematurity to other services and programs because of a lack of data. There may be potential for public policy to reduce the rate of preterm birth and improve the outcomes for children and families through the financing of health care, the organization of health care, improvements in the quality of care, and other social policies. However, effective public policies will require a better understanding of the determinants of preterm birth.

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Preterm Birth: Causes, Consequences, and Prevention This chapter discusses two aspects of preterm birth and the public sector. The first aspect is the burden of illness associated with preterm birth and its effects on public entitlement and benefit programs. Because preterm birth occurs disproportionately among populations of low socioeconomic condition, the costs associated with prematurity generate a considerable burden on public programs, many of which target low-income and other vulnerable populations. This chapter thus reviews some of the major public programs that incur costs because of preterm birth. In addition, because the consequences of premature birth may last a lifetime, public programs are potentially affected for many decades. Thus, the burden of illness in association with preterm birth to the public sector is long term, highlighting the importance of prevention of premature birth. The second aspect is the potential for public policy to be used to reduce the rate of preterm birth and improve the health outcomes for infants born preterm. For instance, a recommendation from the 1985 Institute of Medicine report Preventing Low Birthweight (IOM, 1985) was that generous eligibility standards should be set to maximize the possibility that poor women may qualify for Medicaid coverage and thus be able to obtain prenatal care. The chapter thus discusses the evidence from policy initiatives, such as the expansions of Medicaid, and discusses future policy options that can be used to reduce the rate of preterm birth. PUBLIC PROGRAM EXPENDITURES ASSOCIATED WITH PRETERM BIRTH Preterm birth occurs disproportionately in populations of low socioeconomic condition. Because many public programs target these populations, the costs of preterm birth to the public are substantial. For example, 40 percent of the medical costs associated with preterm births are paid for by Medicaid (Russell et al., 2005). The costs of preterm birth, however, extend far beyond the medical costs associated with birth. As has been documented in previous chapters, preterm birth has significant lifetime consequences for many infants born preterm. These costs and the associated public burden can extend far into the future—an average of 77 years on the basis of today’s life expectancies (NCHS, 2004a). The consequences of preterm birth span a broad range of services and social supports, along with their associated costs, including medical costs, educational costs, income supports, and costs for other public programs, such as the foster care system. Little is known about the magnitude of the public burden for infants born preterm, aside from the costs associated with the medical expenditures paid for by Medicaid. On the basis of the estimates in Chapter 12 of the medical costs for the first 7 years of life (in present discounted value) for infants born preterm, Medicaid costs for the

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Preterm Birth: Causes, Consequences, and Prevention cohort born in 2005 are estimated to be at least $6.4 billion.1 It should be noted that this is a lower bound on Medicaid expenditures, as it represents only the health care costs in the first 7 years of life. Quantification of the public burden of preterm birth would thus be useful in determining the potential reductions in public expenditures that could be achieved by reducing the rate of preterm birth. However, on the basis of the very high medical costs associated with preterm birth, the burden on public programs is clearly very high. If effective interventions can be found to reduce the rate of preterm birth, the potential for large savings to the public sector exist. Therefore, investments in the research necessary to find effective interventions for preterm birth—whether they are clinical or are related to the quality, financing, and organization of medical care or to changes in social policy—will generate large returns to the public sector. The public programs most affected by preterm birth are listed in Table 14-1. These span a broad range of medical, educational, income support, and other public programs. Total program expenditures in 2004 are listed in the last column of the table. It is not possible, however, to assign the dollar amounts associated with preterm birth to each of these programs because of a lack of available data. For many programs, no information on the number of beneficiaries who were born with low birth weights is available. The programs listed in Table 14-1 have different eligibility and benefits arrangements; and most allow substantial state variations in program structure, benefits, eligibility, and enrollment. Of the programs discussed here, only educational and maternal and child health programs have no means testing. Federal standards for eligibility and benefits are in effect for only one program, Supplemental Security Income (SSI). Health Insurance Medicaid pays for a large share (40 percent) of the medical costs associated with preterm birth (Russell et al., 2005). Because low-income pregnant women are eligible for Medicaid, Medicaid pays for about a third of all deliveries in the United States (Rosenbaum, 2002). Most children in the United States receive health insurance through a parent’s employment. The next most common sources of health insurance for children are the Medicaid program and the State Children’s Health Insurance Program (SCHIP), two public programs that combine federal and state revenues. 1 Data are based on the medical costs reported in Chapter 12 and assume that 40 percent of infants born preterm are covered by Medicaid over the first 7 years of life.

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Preterm Birth: Causes, Consequences, and Prevention TABLE 14-1 Selected Public Programs Affected by Preterm Birth Program Income Eligibility State Options for Eligibility Total Budgetary Expenses, Fiscal Year 2004 Health insurance Medicaid $471 billion State Children’s Health Insurance Program $11.2 billion Supplemental Security Income   $36.4 million Education (early intervention and special education services)   $11.1 million Temporary Assistance to Needy Families $19.6 million Title V Maternal and Child Health Programs   $730 million Other Foster care     $6.8 million Juvenile justice     $336 thousand SOURCES: ACF (2005), 45 CFR § 1355.57 (2005), CMS (2005a,c), DOE (2005, 2006), DOJ (2005), HRSA (2000, 2004), OJJDP (2005), and SSA (2005a,b,c,d). Recent changes in Medicaid eligibility (and eligibility for a number of other public programs) have made it more difficult for individuals who are not U.S. citizens to receive Medicaid coverage. Until reforms were enacted in the late 1990s, most legal immigrants had access to Medicaid coverage, although undocumented immigrants did not. With the reforms, even legal immigrants face substantial barriers to access. As of 2004, half of all states covered pregnant immigrants using state funds (http://kff.org/uninsured/upload/Health-Coverage-for-Immigrants-Fact-Sheet.pdf), partly through recognition of the fact that the infants will be citizens of the state, and so states seek to help improve the outcomes of all pregnancies (Kaiser Family Foundation, 2004). The original purpose of private health insurance programs was to share the risk associated with unpredictable serious health events and their treatment, and private health insurance benefits have broadened greatly over the

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Preterm Birth: Causes, Consequences, and Prevention decades to include a good deal of preventive care. Nonetheless, private health insurance typically limits substantially the benefits that it provides for children with long-term health conditions. Coverage for rehabilitation services, for example, is usually limited to 3 months after an acute event that usually requires hospitalization. Thus, the notion of ongoing treatment to maintain or limit the loss of functioning has little place in private health insurance models. In addition, various cost-sharing mechanisms in private health insurance programs can severely strain the resources of families raising children with chronic health conditions, who must frequently make substantial copayments for health care. In contrast, public health insurance, especially Medicaid, has relatively generous long-term health care benefits, partly reflecting the high degree of dependence of many older citizens on Medicaid for nursing home care. Thus, Medicaid includes a relatively generous package of benefits for longterm care, including coverage for specialized therapies and durable medical equipment (although states have much flexibility in the scope and the amount of services that they will cover and in the payments that they provide for services). Another public program, the Medicaid Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program, requires states to provide the full range of federally approved services (even if the state’s Medicaid plan does not routinely cover these services) for conditions identified in a visit paid for through the EPSDT program. SCHIP covers children in households with incomes that are not necessarily below the poverty level. In the development of SCHIP, the U.S. Congress considered whether it should include the same benefits package available through Medicaid but ultimately decided to require a less generous package for status, choosing to develop a new program, SCHIP, rather than simply expanding the state Medicaid programs. Thus, although SCHIP covers increasing numbers of children in households with incomes above the Medicaid eligibility levels, SCHIP may not offer many longterm-care services. Children with chronic health conditions access Medicaid through several mechanisms. Children who receive public assistance through the Temporary Assistance to Needy Families (TANF) program are automatically eligible for Medicaid. Over the past 2 to 3 decades, Medicaid eligibility has been increasingly separated from eligibility for public assistance, mainly through increases in the maximum incomes for eligibility. Nonetheless, substantial numbers of children who became eligible under the more generous income criteria never enrolled in the program. Other routes to Medicaid eligibility include the SSI disability program and spend-down mechanisms (by which a person becomes eligible for Medicaid if health care expenses bring the household income down to Medicaid income eligibility levels).

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Preterm Birth: Causes, Consequences, and Prevention Importantly, the long-term benefits provided through Medicaid can pay for the highly needed specialized treatments over time for children with chronic conditions following preterm birth. Education Through the Individuals with Disabilities Education Act (IDEA; which was renewed in 2004) (DOE, 2005), children with long-term health conditions receive a variety of services. The original legislation underlying these programs called for assuring “the free appropriate public education in the least restrictive environment.” The two main IDEA programs include early intervention services and special education. Early intervention services cover children from birth to 3 years of age, at which point eligible children enter the special education system. Early intervention services typically provide in-home services for very young children. These services are mainly directed toward strengthening parents’ skills to provide treatments or stimulation for their children. These services also include group programs for older children (1- and 2-year-olds). States vary in their eligibility requirements for early intervention services; for example, some states include children at risk of a developmental disability, whereas others require documentation of developmental delay before they provide services. Special education services are directed toward ameliorating health and developmental conditions that may interfere with the child’s ability to learn. Some services are directly educational; that is, children are placed in a specialized classroom part time or full time to maximize their educational development. Other services may be directed to the treatment of problems that may interfere with the child’s ability to participate in regular or specialized classrooms; for example, speech and language services and physical and occupational therapy are provided. Other services that are provided may include social work or psychological counseling. Early intervention and special education services may therefore greatly aid children and youth with chronic conditions, but they also account for substantial public expenditures. Supplemental Security Income The SSI program provides cash assistance to low-income people with substantial disabilities. SSI recipients in almost all states gain access to Medicaid coverage, even when their incomes may be above the usual state requirements for eligibility for the program. Nonetheless, SSI also has financial eligibility requirements, although household incomes can range up to as much as twice the federal poverty level. The maximum income support is currently about $6,000 per year; this money can be used for any need that a

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Preterm Birth: Causes, Consequences, and Prevention child may have. SSI sets a fairly severe standard of disability for eligibility: estimates are that only about 1 to 2 percent of U.S. children would meet the disability standards, well below estimates of the numbers of children with health-related limitations of activity (the current estimate is that 7 to 8 percent of U.S. children have health-related limitations of activity) (NCCD, 1995). Current presumptive eligibility criteria include a birth weight of less than 1,200 grams for a child claimant less than 1 year of age, with a planned reevaluation at 12 months of age to determine ongoing clinical severity. In 2004, 16,349 children were approved for the receipt of SSI under the presumptive eligibility criterion of a birth weight of less than 1,200 grams. An additional 2,452 children with birth weights between 1,200 and 2,000 grams were also enrolled in the program (SSA, 2005a; Title XVI Only Disabled Child claims applications filed 1995–2004; Title XVI Disability Research File, obtained from the SSA Office of Disability Programs). The eligibility determination process can be complex, with the person (or family) applying to the Social Security Administration, which then refers the case to the state’s Disability Determination Service, which operates under rules established by the federal government. The state staff, who are usually lay personnel, review the child’s medical records and supporting evidence to determine whether the child meets SSA’s listed criteria for eligibility. The determination of eligibility can be difficult, especially for very young children. SSI expenditures for children grew rapidly in the early 1990s, after major expansions in clinical eligibility for SSI (with new allowable diagnoses) as well as other efforts to improve the access of children with disabilities to the program were implemented. SSI (and related Medicaid) expenditures thus represent another high-cost item for children with disabilities and range from $12 billion to $15 billion per year (Mashaw et al., 1996). For children who are severely disabled, SSI eligibility can continue into adulthood. Under the SSI program, a redetermination of eligibility status for SSI is undertaken by use of the eligibility criteria for adults when the child reaches age 18. In contrast to the criteria for children (that the impairment results in severe functional limitations), the criteria for adults require proof that the individual cannot sustain gainful employment. If an improvement is possible but cannot be predicted, the case will be reviewed about once every 3 years and is then reviewed every 7 years if improvement is not expected. Although it is not known how many individuals enrolled in the SSI programs for adults and children were born preterm, preterm birth and its possible adverse long-term health outcomes generate public costs through the SSI program. These public costs can extend far into the future for any child born preterm, potentially for the entire life course. The latter may

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Preterm Birth: Causes, Consequences, and Prevention span many decades, as the average life expectancy is 77 years for children born in 2005. Temporary Assistance to Needy Families Income supports for low-income families are also provided through the TANF program, which replaced the Aid to Families with Dependent Children (AFDC) program in 1997. In 1996, the U.S. Congress passed the Personal Responsibility Work Opportunity and Reconciliation Act (PRWORA), known as “welfare reform,” (PRWORA, 1996) which ended the long-standing federal entitlement to cash assistance for the poor (AFDC). Federal mandates imposed a 5-year lifetime cap on benefits for individuals, required recipients to work for their benefits (“workfare”) within 2 years of receiving assistance, and prohibited eligibility among certain groups (drug felons and noncitizens). Half of all states, however, have exemptions to the 5-year time limit for the care of a disabled child. PRWORA separated the administration of the TANF program from that of Medicaid, with the intention of maintaining Medicaid enrollment for this population. However, the delinkage of Medicaid from the TANF program did not work as intended, and researchers have documented decreases in Medicaid enrollment among TANF program (AFDC) enrollees (Gold, 1999; Klein and Fish-Parcham, 1999; Mann and Schott, 1999; Wellstone et al., 1999) and among women of reproductive age (Boonstra and Gold, 2002; Mann, 2003) in the general population. Title V Maternal and Child Health Programs The Title V Maternal and Child Health programs provide a variety of services for children with chronic health conditions. Approximately 85 percent of the federal funds from Title V Maternal and Child Health programs go directly to the states, which are given wide flexibility in their use for maternal and child health programs. About one-third of the state allocations go to programs for children with special health care needs; about 50 percent of the funds are used for preventive programs in maternal and child health (Lesser, 1985). The remaining 15 percent of the federal funds support a variety of special programs of regional and national significance in maternal and child health. These vary from the provision of support for professional training programs, a small research program, and targeted programs in areas such as improving health insurance coverage for children with special health care needs and grants to support the development of regional systems of care for various health conditions. Recent renewals of the Title V enabling legislation have charged the federal Maternal and Child Health Bureau with the responsibility of supporting the development of

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Preterm Birth: Causes, Consequences, and Prevention systems of care for children with special health care needs. The federal response to the U.S. Supreme Court Olmstead decision furthered this responsibility by again defining the bureau as the lead agency for community service systems, helping to ensure the integration of children with special health care needs into communities (New Freedom Initiative). These community service programs are meant to help organize the complex variety of services that children with chronic conditions may need. Foster Care and Juvenile Justice Programs Children in foster care have particularly high rates of chronic health problems, both primary mental health conditions and a variety of chronic physical conditions (Chernoff et al., 1994; Halfon et al., 1992, 1995). Many of these children were born preterm, although the contribution of preterm birth to the numbers of children in foster care is not clear. Many children also experienced disorganized homes in which their parents’ own conditions limited their ability to nurture them, with child abuse and neglect common among children who are subsequently placed in foster care (Chipungu and Bent-Goodley, 2003). Children in the juvenile justice system have demographics and clinical characteristics similar to those of children in foster care (although their median age is higher). They also have high levels of chronic health conditions, especially mental health conditions (particularly attention deficit-hyperactivity disorder) (Chernoff et al., 1994). A recent report from the Urban Institute highlights the interactions among disability, dependence on public income support, and other programs by noting that almost half of adolescents with SSI support transitioning to young adulthood have dropped out of school, and a third have been arrested or have been reported to have some troubles that resulted in their participation in the court system (Loprest and Wittenburg, 2005). Although the increased risk of chronic health conditions and behavioral problems would appear to place children and adolescents born preterm at greater risk for foster care placement and delinquent behavior, the limited literature does not appear to support this concern (Hack et al., 2002; Leventhal, 1981; Leventhal et al., 1984). However, studies have not examined whether preterm birth incurs added costs in foster care and juvenile justice systems. Finding 14-1: The distribution of the costs of preterm birth between the public and the private sectors and among constituencies within these sectors has not been determined. Children born preterm may require a wide array of publicly supported services.

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Preterm Birth: Causes, Consequences, and Prevention ROLE OF PUBLIC POLICY AND PROGRAMS IN REDUCING PRETERM BIRTH AND ENSURING HEALTHY OUTCOMES Public policy and programs have the potential to reduce the rate of preterm birth and ensure healthy outcomes for infants who were born preterm through the provision of guidance on how to formulate effective public policies to reduce the rate of preterm birth. The provision of guidance can be difficult, however, because, as documented throughout this report, a great deal of uncertainty regarding the mechanisms through which preterm birth occurs still exists and relatively little evidence regarding effective interventions is available. The provision of guidance on how to improve the outcomes for children who were born preterm is somewhat less problematic, however, as the evidence on the positive effects of social and other policies on the health of children is stronger. Effective policy recommendations, however, will require more research to identify effective clinical interventions; to determine the role of the quality, financing, and organization of the health care delivery system on outcomes; and to identify the role of social policies on the health of mothers and children. The lack of data that can be used to inform policies has been reported elsewhere. In 2001, the Advisory Committee on Infant Mortality published a report that reviewed the current literature and concluded that the findings from the literature justified “considerable investment in research programs, and policies focused on the goal of decreasing the incidence of preterm delivery, and thus of low birth weight and infant mortality” (ACIM, 2001, p. 15). The Committee on Infant Mortality called for research efforts in areas of disparities, smoking prevention and cessation, promotion of health education and healthy behaviors, and understanding the causes of preterm labor and premature rupture of membranes. It also recommended investigation of the health care delivery system and its effects on birth outcomes. The remainder of this section discusses selected policy options for the financing of health care, the organization and quality of care, and other social policies and their possible roles in reducing the rate of preterm birth and ensuring healthy outcomes for infants. Financing of Health Care Policy makers have focused on the expansion of access to prenatal care since the 1980s in an effort to improve birth outcomes in general, including a reduction in the rate of preterm birth. These efforts have primarily been achieved through an expansion of Medicaid eligibility for pregnant women at the state level. States have the option of extending eligibility to those with incomes greater than 133 percent of the federal poverty level, and the majority of states do so. A direct link between increased insurance

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Preterm Birth: Causes, Consequences, and Prevention coverage and the receipt of early prenatal care was demonstrated in a study by the RAND Corporation of Medicaid eligibility expansion in Florida (Long and Marquis, 1998). When Medicaid eligibility expanded to include those with incomes at 185 percent of the federal poverty level, the numbers of women who sought prenatal care in the first trimester rose, with more than 80 percent of pregnant women receiving care early in their pregnancies (Schlesinger and Kornesbusch, 1990).2 Alternatively, states can increase access to prenatal care outside of the confines of Medicaid by expanding programs that target uninsured pregnant women to provide them with access to prenatal care through Maternal and Child Health program block grants (Schlesinger and Kronebusch, 1990). Coverage of prenatal services has also been extended through expansion of SCHIP [Title XXI of the Social Security Act, Pub I, No. 74-271 (49 Stat 620) (1935)]. Evaluations of the results of the Medicaid expansions have not found reduced rate of preterm birth or improvements in maternal outcomes in association with these increases in insurance coverage for pregnant women, however (Piper et al., 1990), despite increases in the levels of enrollments in Medicaid and the use of prenatal care. Some evidence suggests, however, that the expansions may have been associated with decreases in the rate of infant mortality (Currie and Gruber, 1996). One reason that the expansions may not have been effective in reducing the rate of preterm birth may be that current prenatal care is focused on risks other than preterm birth (see Chapter 9). This is in part due to the uncertainty regarding the mechanisms through which preterm birth occurs and the existence of relatively little evidence on effective interventions for the prevention of preterm birth (see Chapters 6 and 9). In fact, an increasing number of studies challenge the role of prenatal care in the prevention of preterm birth (Alexander and Kotelchuck, 2001; Lu and Halfon, 2003). Even when prenatal care is initiated early in the first trimester, prenatal care has not been demonstrated to decrease the rate of preterm birth (Fiscella, 1995). Intensive prenatal care programs3 targeted at women identified to be at high risk for preterm delivery have also not been demonstrated to be effective when they have been evaluated in randomized control trials (Fiscella, 1995), nor does access to early prenatal care eliminate the disparities in the rate of preterm birth by race and ethnicity (CDC, 2005i). Studies 2 Other authors disagree, noting an overall increase in the number of prenatal visits (by an average of one additional visit per mother) associated with Medicaid eligibility expansions without a coincident shift in earlier care. 3 Preterm birth prevention programs have a variety of features, including early and frequent visits, weekly or biweekly cervical ultrasounds, case management, and education regarding the warning signs of preterm labor.

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Preterm Birth: Causes, Consequences, and Prevention of Medicaid programs with enhanced prenatal benefits such as outreach or care coordination have demonstrated that these programs have only modest effects on birth outcomes (Joyce, 1998). Nonetheless, prenatal care provides the mechanism through which maternal risks can be identified and referrals to appropriate hospitals for care can be made. It further provides the framework through which other interventions can be implemented and thus plays an important role in the potential to reduce the rate of preterm birth. Prenatal care is necessary, but not sufficient to reduce rates of preterm birth. The Medicaid eligibility of pregnant women generally ends at 60 days postpartum. It is unknown whether the provision of health insurance for all women of child-bearing age or those at high risk of preterm birth would have an effect on reducing the rate of preterm birth or improving maternal outcomes. However, women who had a preterm birth are at risk for a recurrence in a subsequent pregnancy (Adams et al., 2000; Iams et al., 1998; Krymko et al., 2004), possibly because many of the biobehavioral risk factors for preterm birth are carried from one pregnancy to the next. The interpregnancy period offers an important window of opportunity for addressing these risk factors and optimizing women’s health before their next pregnancy. At present, access to health care in the interpregnancy period is limited for many women, particularly low-income women, whose pregnancy-related Medicaid coverage generally terminates at 60 days post-partum (Gold, 1997). Expansion of Medicaid coverage to low-income women who had a preterm birth (e.g., through a Medicaid waiver) is one policy option for improving health care access for these women in the interpregnancy period. Several demonstration programs on interconception care have been completed or are ongoing (Dunlop and Brann, 2005; IHPIT, 2003); however, their effectiveness in preventing a recurrence of preterm birth has not been conclusively established. More research will be required to define the contents and demonstrate the effectiveness and cost-effectiveness of interconception care before policy recommendations can be made. Organization and Quality of Perinatal and Neonatal Care Beyond the content of prenatal care, little is known about the quality of care throughout the reproductive spectrum. There are also few indicators of the quality of care that infants born preterm receive in neonatal intensive care units (NICUs). As discussed below, however, the potential to reduce the rate of infant mortality in association with preterm birth is high if such measures could be developed. Knowledge of the quality of care received during pregnancy and delivery also has the potential to reduce the rate of preterm birth. However, few quality measures related to the perinatal period have been developed. Re-

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Preterm Birth: Causes, Consequences, and Prevention porting systems such as the National Center on Quality Assurance’s Health Plan Employer Data and Information Set measures (www.ncqa.org/Programs/HEDIS) contain only a few basic indicators related to the timing and content of prenatal care and the birth outcome. Better measures of the quality of health care therefore need to be developed to enable the implementation of quality improvement efforts and to guide public policy. The organization of the health care delivery system has long been viewed as a key determinant of birth outcomes. In the 1970s, the March of Dimes developed practice guidelines advocating for the regionalization of perinatal care in the United States (Committee on Perinatal Health, 1976). These recommendations were the result of research during the previous decade linking the regionalization of neonatal care with improved neonatal survival and improved overall outcomes. As the program was initially envisioned, regionalized perinatal care involved the designation of three levels of care based on the clinical conditions of the patients, both the mother and the infant. Level I centers were able to provide basic or routine obstetric and newborn care. Level II centers had the capability to care for patients of moderate risk, and Level III centers were reserved for high-risk cases requiring the most specialized care. In addition to the designation of levels of care, regionalized perinatal care was to include the coordination of care among the region’s hospitals through maternal risk evaluation, consultative services, maternal transport, neonatal transport, long-term follow-up, and when appropriate, transport back to centers that provide lower levels of care. In the early 1980s the Robert Wood Johnson Foundation sponsored a multicenter program to evaluate the benefits of regionalized perinatal-neonatal care (McCormick et al., 1985). That project documented the increase in the regionalization of care with a concomitant marked improvement in neonatal survival. By the latter half of the decade, however, the emphasis on the regionalization of perinatal care was being replaced by interhospital competition driven by the reimbursement policies of an increasingly managed care environment. To compete for managed care contracts and to maintain and attract obstetric patients, smaller community hospitals were hiring neonatalogists and building new NICUs, even in the absence of increased obstetric patient volumes or the ability to provide comprehensive neonatal care services. In 1988, in a follow-up to the initial Robert Wood Johnson Foundation demonstration project, the foundation sponsored a review of the regionalization of perinatal care (Cooke et al., 1988). Contrary to the first report, that review highlighted a reversal in regionalization, increased competition between hospitals, and blurred distinctions between levels of care. The negative impact of such deregionalization was documented in a more recent review of the experience in Missouri (Yeast et

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Preterm Birth: Causes, Consequences, and Prevention al., 1998). The effect of deregionalization during the time period between 1982 and 1986 was compared with that during the time period between 1990 and 1994. An increase in the number of self-designated Level II facilities occurred over this time period, with a concomitant decrease in the number of Level I institutions. However, the relative risk of neonatal mortality for infants born with very low birth weights was twofold higher in Level II centers than in Level III centers. More recently, the private sector has begun a trend toward moving patients to high-quality hospitals through evidence-based selective referral. Evidence-based hospital referral in its broadest sense means that health care providers make sure that patients with high-risk conditions are treated in hospitals that provide care at levels that result in the best outcomes. This approach has been adopted by the Leapfrog Group,an organization founded by the largest employers in the United States to improve value-based purchasing of health care (www.leapfroggroup.org). Evidence-based hospital referral standards for infants born with very low birth weights required that infants who had an expected birth weight of less than 1,500 grams, a gestational age of less than 32 weeks, or correctable major birth defects be delivered at a regional NICU with an average daily census of 15 or more. Several studies have focused on the role of volume in the outcomes of care in a NICU (Phibbs et al., 1996; Rogowski et al., 2004a). One of those studies (Rogowski et al., 2004a) addressed the appropriateness of the use of the volume and the level of care for the selective referral of patients. That study demonstrated that the NICU volume and the level of care provided in the NICU explain very little of the variation among hospitals in the rates of mortality among infants born with very low birth weights, although volume and the level of care provided in the NICU were statistically significant determinants of outcomes. The NICU volume, the level of care provided in the NICU, and other readily available data on hospital characteristics explained at most 16 percent of the variation in the rates of mortality among a large sample of hospitals in the Vermont Oxford Network (which operates 400 NICUs in the United States). In general, large variations in outcomes exist among NICUs that cannot be explained by patient mix or other readily observable hospital characteristics, such as volume and level of care. Recent research has suggested a role for the organizational and management structures of NICUs in ensuring good patient outcomes (Pollack et al., 1998). There is evidence that adult ICUs that these factors are associated with higher quality of care (Shortell et al., 1994). Given the high level of nursing intensity required in NICUs, it will be important to determine the role of nursing in providing high-quality care, which has been demonstrated to be important in studies of adult populations (Tourangeau et al., 2006). There is also evidence that other NICU staff, such as nutritionists, contribute to high-quality care

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Preterm Birth: Causes, Consequences, and Prevention (Olsen et al., 2002). In summary, more research on the determinants of high-quality care will be needed so that patients can be sent to the best hospitals. Although previous strategies for the regionalization of neonatal health care provision were primarily based on the level of NICU care required, recent approaches to moving patients to appropriate hospitals have focused more broadly on high-quality hospitals. However, the identification of high-quality hospitals is difficult, and methods that can be use to identify high-quality hospitals will require further research. Nonetheless, the rate of mortality among infants born preterm could decline dramatically by focusing policies on improving the quality of hospital care. A recent study demonstrated that for the Vermont Oxford Network, if all hospitals achieved risk-adjusted mortality rates of the highest performing quintile, the overall mortality rate for very low birth weight infants would decrease by 24 percent (Rogowski et al., 2004b). Finding 14-2: The literature on the environment for the perinatal and neonatal management of infants born preterm is evolving from a strict reliance on a limited characterization of levels of care to more clinically relevant responses to patient needs. However, the optimal deployment of resources for specific types of preterm delivery is not yet established. Early Intervention and Coordination of Programs for High-Risk Children Early intervention programs have been demonstrated to be effective, at least in the short term, in improving the cognitive outcomes for at least some children born preterm (see Chapter 11). They also have the potential to lead to important improvements in family functioning (Berlin et al., 1998; Majnemer, 1998; McCormick et al., 1998; Ramey and Ramey, 1999; Ramey et al., 1992). Evidence on the long term-effects, however, is inconclusive. The early intervention programs studied varied in the severity of the conditions affecting children with disabilities, as did the intensity and the extent of the services provided. The establishment of quality standards for these programs holds promise for improving the outcomes for children born preterm. The coordination of care and other social programs for children born preterm may also improve outcomes, as children with special needs encounter many gaps in coverage for services in both the private and the public sectors. As noted earlier in this chapter, however, the public programs aimed at caring for these children are a patchwork, with little coordination between programs. A unified approach to providing the medical, educational,

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Preterm Birth: Causes, Consequences, and Prevention and other needs of these children may ensure healthy outcomes. Such a coordinated approach may also benefit all children with special needs, whether they were born preterm or not. A unified approach would require both the elimination of the patchwork nature of the programs and the provision of comprehensive health care, educational, and other benefits to these children. Other Social Programs Because preterm birth is a complex cluster of problems and considerable uncertainty on the mechanisms of occurrence of preterm birth exists, it is difficult to provide guidance on how public policy can be used to reduce the rate of preterm birth, beyond those already discussed. A number of countries have addressed preterm births by instituting policies. For example, as discussed in Chapter 5, Belgium and Sweden instituted policies regarding coverage of services for IVF to encourage single embryo transfers. As a result the percentage of multiple births, which carry a significant risk for preterm birth, has significantly decreased. In the 1970s, France instituted a perinatal health policy to prevent preterm birth (for review see Papiernik and Goffinet, 2004). A reduction in the proportion of preterm deliveries (before 37 weeks for singleton pregnancies) has been reported over the past 30 years. The proportion decreased from 8.3 percent in 1972 to 6.8 percent in 1976, to 5.6 percent in 1982, to 4.9 percent in 1988. This decrease was more notable for preterm births less than 34 weeks. In addition, spontaneous preterm births decreased, while indicated preterm births increased. It has been difficult to replicate these results in other countires. As discussed in Chapter 1, it is difficult to draw comparisons of preterm birth rates among various countries because of differences in measurement of gestational age, reporting of fetal deaths and live births which affect preterm birth rates, and variations in maternal characteristics and behaviors, social environment, and health services. A growing body of evidence suggests potential directions for policy on the basis of the individual, interpersonal, neighborhood, and environmental factors that have been shown to be associated with preterm birth. More research on the determinants of preterm birth will be required, however, before any recommendations can be made. Among individual characteristics, poverty is one of the strongest predictors of preterm birth (see Chapter 4). Poverty is a complex problem that can be influenced directly by income support programs for low-income people, such as the TANF program, or indirectly through mechanisms such as minimum wage policies; housing policies; the Food Program for Women, Infants, and Children; and educational policies. Little evidence that directly links specific policies to a reduced rate of premature birth is currently avail-

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Preterm Birth: Causes, Consequences, and Prevention able, however. Poor women are also at risk of more stressful life events and more chronic stress (Lu et al., 2005; Peacock, 1993). On the employment side, it is worth noting that the literature provides some evidence that work that is physically demanding, work that requires prolonged standing, shift or night work, or work that creates high cumulative levels of fatigue is associated with an increased risk for preterm birth (Mozuekewich et al., 2000). The work requirements of the TANF program might need to be examined more closely if stronger evidence emerges linking certain types of jobs and preterm labor. Pregnancy in unmarried women has been associated with a higher risk of preterm birth. Public policies can influence family formation. For example, the “marriage penalty” under current Earned Income Tax Credits (EITC) or TANF programs and state child support policies may discourage family formation among unmarried couples (McLanahan et al., 2001). Public policies can be used to encourage family formation and partner involvement, such as allowing deductions on the second earner’s income for EITC, eliminating the distinction between single-parent and two-parent families in determining eligibility for the TANF program, and experimentation with child support amnesty programs. Whether such policies will lead to greater family formation and lower preterm birth rates among unmarried couples remains to be determined. In addition to operating at the individual level, socioeconomic condition operates at the group and the community levels in potentially important ways, also suggesting a potential role for public policy (see Chapter 4). In particular, policies affecting neighborhood context hold the potential for reducing the disparities in birth outcomes between whites and African Americans because of the clear patterns of residential segregation that result in unequal exposures to adverse neighborhood conditions among different racial and ethnic groups. Concentrated poverty and associated neighborhood disadvantages, including a lack of goods and services, decreased access to primary care physicians and obstetricians (Fossett et al., 1992), a lack of recreational opportunities, poor housing quality, and high crime rates, are more common features of African-American than white neighborhoods (Massey and Denton, 1993; Wilson, 1987). However, further research is needed to understand the roles of these factors in preterm birth. Beyond segregation, there is some evidence that racism and discrimination have also been associated with poorer pregnancy outcomes. Public policies affecting housing, segregation, discrimination, and the built environment may hold promise for reducing the rate of preterm birth and reducing the disparities in the rates of preterm birth by race and ethnicity. It has also been discussed in this report that abstention from drugs, particularly cocaine, may play a role in reducing preterm birth. Public health

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Preterm Birth: Causes, Consequences, and Prevention programs such as educational interventions could potentially be used to address these issues. Further, some evidence suggests that healthy diets and exercise may be important. Educational interventions may also be useful in promoting healthy behaviors. As noted above, changes in the built environment of disadvantaged neighborhoods, such as the presence of safe parks and grocery stores, could also potentially reduce the rate of preterm birth by promoting healthy behaviors. Finally, environmental exposures may play a role in preterm birth, as discussed in Chapter 8. Reducing such exposures could be addressed by targeted environmental policies. However, further evidence needs to be developed before specific recommendations related to environmental exposures can be made. Finding 14-3: Effective public policies that will reduce the rates of preterm birth and improve the outcomes for infants born preterm will require a better understanding of the determinants of preterm birth and the determinants of healthy outcomes for infants born preterm and better information on effective interventions. Preterm birth is associated with large expenditures across a wide range of public programs, including those for health care, education, and income support. Public investment in reducing the rate of preterm birth has the potential to result in large cost savings not only to society as a whole but also to the public sector.