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Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment (1996)

Chapter: 7 Prevention of Fetal Alcohol Syndrome

« Previous: 6 Epidemiology of Women's Drinking
Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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7
Prevention of Fetal Alcohol Syndrome

Fetal Alcohol Syndrome (FAS), alcohol-related birth defects (ARBD), and alcohol-related neurodevelopmental disorder (ARND), result from a complicated set of factors that influence exposure, whether a woman who abuses alcohol becomes pregnant and continues to drink throughout pregnancy, and vulnerability to adverse fetal effects at a given level of exposure. Some of these pose opportunities for prevention, others are impediments. Alcohol is a legal drug consumed by many people, but its abuse carries heavy costs—for the individual and for society—apart from costs associated with FAS. Many people who abuse alcohol do not get the help they need, either because they do not have access to the health care or social services system or because some health care or social services professionals are uncomfortable talking with patients about substance abuse problems. Finally, the use and abuse of alcohol have long been centered in emotional and moral debate. Women who abuse alcohol or other substances are particularly stigmatized.

The complicated interrelation among alcohol, women, pregnancy, the woman's spouse or other significant partner and community, and the health care profession means that the prevention of FAS, ARBD, and ARND requires a comprehensive program encompassing a variety of approaches. Because alcohol abuse during pregnancy most likely is associated with a number of different drinking patterns which have various characteristics and etiologies, concepts from cultural, sociological, behavioral, public health, and medical disciplines are relevant to the etiology and prevention of FAS and related conditions.

This chapter discusses prevention efforts aimed at the mother and people with whom she has close personal relationships, and relevant sectors of the community

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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prior to the birth of an affected baby. The next chapter describes prevention efforts that might be aimed at the baby and the family after the child is born to ameliorate the effects of prenatal exposure—that is, efforts aimed at preventing secondary disabilities once a child with FAS, ARBD, or ARND is born. The approach to prevention of FAS, ARBD, and ARND contained in this chapter is conceptually broad and includes treatment and maintenance for those few women who drink heavily during pregnancy. The chapter begins with a general framework for discussing prevention. This is followed by an in-depth description of prevention strategies for women at risk of giving birth to an FAS child.

A PUBLIC HEALTH MODEL OF PREVENTION

The challenge in broad-based prevention is to alter behavior within a variety of settings (Casswell and Gilmore, 1989; Mosher and Jernigan, 1989). Change that occurs in familial, religious, social, economic, judicial, educational, and health care institutions can affect individual and group behavior. Since all social institutions can be potential agents of change (Bloom, 1981), a broad-based approach seems to be most appropriate. A comprehensive FAS prevention program should provide multiple and overlapping levels of reinforcement, incentives, and controls. Most prevention efforts should be aimed at the mother, and to some degree at the father, of the child. Preventing the birth of a child with FAS may involve different actions affecting maternal behavior: broad-based prevention; targeted prevention efforts with the woman, her spouse or other significant partner(s), and additional significant family members; alcohol abuse treatments; contraceptive services; and aftercare.

It is important to note that the committee was charged with discussing what is known from a research base about preventing FAS, ARBD, and ARND. There is a wealth of information being generated from communities concerned about the FAS problem. Many of these projects derive from common sense approaches and entail community support, general programs to increase protective factors and decrease risk factors for alcohol abuse, and the like. Reasonable and necessary services are provided to pregnant, substance-abusing women. As with many current health interventions, however, the utility and value of many of these programs as prevention efforts is unknown because of the limited evaluative component of the programs. As this chapter points out, controlled research on the prevention of FAS is scarce. Also, as discussed in greater detail in a subsequent section, it is not clear if these programs are available to, used by, or effective for those women who abuse alcohol in a manner that puts their fetus at risk for FAS, ARBD, or ARND.

The committee found it helpful to think about and analyze the prevention of FAS and related problems within a conceptual framework. Two structures were considered by the committee—the classic framework of primary, secondary, and tertiary prevention and a framework developed by the IOM Committee on Prevention

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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of Mental Disorders (IOM, 1994). In more classical terms, primary prevention refers to a focus on healthy persons and seeks to avoid the onset of disease processes (IOM, 1991). Secondary prevention involves early detection and treatment of persons with early or asymptomatic disease, and tertiary prevention concentrates on arresting the progression of a condition and on preventing or limiting additional impairment. The committee decided to use the latter framework (IOM, 1994), which describes a spectrum of seven levels of intervention, as a more appropriate tool, with some adaptation, to discuss prevention of FAS, ARBD, and ARND. The hallmark of this framework is that one enters into the continuum of interventions in a manner proportional to the certainty and severity of the risk involved. That is, the intervention becomes more specific and intensive as the risk is defined less by general population characteristics and more by individual characteristics.

The model presented was originally described by Gordon (1983, 1987) and subsequently adapted for an IOM committee (IOM, 1994). The model includes a broad spectrum of prevention measures. The model also includes two related components—treatment and maintenance. Prevention activities vary from population-wide programs to efforts aimed at an individual at high risk. Prevention is divided into three levels (universal, selective, and indicated), treatment into two (case identification and standard treatment for known disorders), and maintenance into two (compliance with long-term treatment and aftercare). The model developed by the IOM in 1994 required slight modifications for applicability to FAS, but the general concepts remain the same (see Figure 7-1). This will be explained in the next section. The committee to study fetal alcohol syndrome also stresses that core research in fields such as biomedicine, behavioral and social sciences, and epidemiology support, inform, and are vital to research in FAS prevention.

Because significant people in the life of a woman can play a crucial role in encouraging a healthy pregnancy or, unfortunately, encouraging unhealthy practices, the committee took a family-oriented approach to prevention. Clearly, a woman's partner and her community are appropriate targets for prevention interventions and subjects for prevention intervention research. After the birth of an FAS child, there are two targets for intervention—the mother and the child. Each of them is a patient in need of care; each is a target for treatment and maintenance as well as for prevention intervention for the birth of another FAS child. Case identification of FAS, ARBD, and ARND is described in Chapter 4. Treatment and maintenance of the person with FAS are discussed in Chapter 8.

Definitions

Universal prevention attempts to promote the health and well-being of all individuals in society or of a particular community. Universal prevention interventions are those targeted to the general public to or an entire population group

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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image

FIGURE 7-1 The intervention spectrum for fetal alcohol syndrome.
Adapted from Institute of Medicine (1994).

that has not been identified on the basis of individual risk. The intervention is desirable for everyone in that group. Examples include universal childhood immunizations and water fluoridation.

Selective prevention interventions are targeted to individuals or a subgroup of the population, whose risk of developing the condition is significantly higher than others by virtue of belonging to that subgroup. There is no assessment of individual risk in selective prevention interventions. An example would be routine mammograms for women over 40 to 50 years of age. Another example would be typhoid vaccine for Americans traveling to less developed countries.

Indicated prevention interventions are targeted to high-risk individuals who are identified as having minimal but detectable signs or symptoms foreshadowing a condition or who have biological markers indicating predisposition (IOM, 1994). An example, in contrast to that offered for selective prevention interventions, would be frequent mammograms in a woman who has had breast cancer. Another example is rabies vaccination in someone bitten by a raccoon with unknown rabies status. Special considerations related to FAS necessitated some modification of this definition. That is, although prevention interventions are generally thought of as stopping short of treatment interventions, when thinking about a comprehensive prevention program for FAS, ARBD, and ARND, it is clear that treatment of alcohol problems in pregnant women (and their partners) is an appropriate indicated prevention intervention for the fetus being carried by the woman, as well as for future pregnancies. In addition, treatment of alcohol problems in the pregnant woman will improve her health and well-being.

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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UNIVERSAL PREVENTION INTERVENTIONS

Universal prevention interventions are directed to the general public or to an entire population group that has not been identified on the basis of increased risk. Interventions tailored specifically to pregnant women or preconceptional women could be included in this category. Universal prevention could include any activity that generally promotes responsible use of alcohol and discourages irresponsible use of alcohol, or it could be specific to fetal alcohol syndrome. As described later, it is not clear whether these general interventions have had, or could ever have, an impact on FAS, ARBD, or ARND.

General universal prevention strives to ensure that all members of society understand that drinking alcohol can have hazardous consequences, and it promotes and supports positive, broadly shared attitudes and beliefs to protect the individual from harm due to alcohol consumption. The committee focused on FAS, ARBD, and ARND, which are related to consumption of very high levels of alcohol or to extreme patterns of alcohol consumption. They have not reviewed the literature on the health benefits (e.g., cardiovascular) of modest alcohol consumption except to note that there are some data to suggest such benefits for certain populations (Ashley et al., 1994; Fuchs et al., 1995). Moderate alcohol consumption as a substitute for abstinence or light drinking should not be encouraged as a public health measure (Addiction Research Foundation of Ontario and the Canadian Centre on Substance Abuse, 1994). Encouraging women to drink during pregnancy on this basis is unwarranted. The reader should consult the published literature for more information (Ashley et al., 1994; Fuchs et al., 1995; U.S. Department of Health and Human Services, 1993).

One of the basic techniques used in universal prevention is public education. Television advertisements, public service announcements, pamphlets, posters, and the like, which serve to educate the public about the risks of alcohol abuse and to encourage responsible drinking are universal prevention interventions that indirectly discourage use of alcohol during pregnancy. Universal prevention could also involve changes to the social environment (Single, 1987; Wallack, 1984), such as laws and regulations reinforcing norms and practices that depict heavy drinking and alcohol abuse as unacceptable.

The literature abuse indicates that higher socioeconomic status (SES), education, and access to meaningful employment are influential in decreasing the likelihood of alcohol abuse and, therefore, may lower FAS outcomes among women. Certainly low SES is correlated with FAS outcomes (Bingol et al., 1987; Sokol et al., 1980), ostensibly because the most highly abusive maternal drinking patterns are found among some individuals in low-SES groups. Although these problems may, in part, be generated by low SES, people who abuse alcohol might also drift to a lower SES. Consequently, universal prevention might be facilitated by improving social and economic opportunities for the entire population and reducing the prevalence of alcohol abuse. However, women

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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of mid or high SES have given birth to children with FAS, ARBD, or ARND. No matter what the socioeconomic level, women who abuse alcohol are at risk for giving birth to an FAS baby.

The above examples are the types of prevention activities undertaken to decrease risk factors and increase protective factors for alcohol abuse in general; they are not specific to FAS. Given the high cost of alcohol-related problems in the United States—$85 billion in 1985, (U.S. Department of Health and Human Services, 1993)—these measures are valuable in and of themselves, apart from whatever impact they might have on FAS. Most certainly, these messages could influence the drinking behavior of some pregnant or preconceptional women.

Universal prevention of FAS further strives to ensure that all members of society understand that drinking during pregnancy can have hazardous consequences. Universal prevention promotes and supports positive, broadly shared attitudes and beliefs to protect the fetus from alcohol. Male partners and extended family members could play vital roles in the translation of these positive traits, as do peer groups (Wilsnack and Beckman, 1984; Wilsnack et al., 1991) and health care providers.

No universally safe level of alcohol consumption has been identified for pregnant women. Neither a specific level of alcohol consumption nor precise information on the biological, experiential, and behavioral characteristics of the mother of an FAS child has been well defined. At present, there is uncertainty whether minimal alcohol intake during pregnancy could be associated with any degree of injury to the baby. Some of the large research studies conducted in various cities in the United States have shown statistical associations between less than heavy levels of alcohol consumption by pregnant women and the birth and developmental outcomes in their offspring, the vast majority of whom have not been diagnosed with FAS, ARBD, or ARND (see Russell, 1991, for a review). For example, a study in Pittsburgh reports deficits in height and weight at age 3 associated statistically with moderate drinking (Day et al., 1991).

There are several issues relevant to the interpretation of these data related to relatively low levels of alcohol exposure and their translation into public health messages. First, statistical association is not proof of causality. That is, there are other factors associated with alcohol consumption during pregnancy that might be the cause of the abnormal outcome measures in the offspring. Some of the studies controlled for a variety of potential confounders, such as tobacco use, but not all of them did. As discussed in Chapter 1 it is not clear how clinically relevant some of the differences might be (Day et al., 1991; Russell, 1991). Finally, many of the more subtle differences in the child associated with low or moderate levels of alcohol intake during pregnancy are very common, and the association with alcohol exposure could be spurious. Assuming a causal relation with alcohol exposure could be erroneous. Although the effects of low levels of alcohol exposure during pregnancy are easier to study rigorously in one sense (the population of pregnant women who drink at low or moderate levels is much

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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greater than the population who drinks very heavily), the subtle nature of some of the outcomes makes it difficult. The committee focused on conditions more closely associated with heavier levels of alcohol consumption. The reader is referred to the many excellent reviews of the effect of lower levels of prenatal exposure for further information (see for example, Jacobson and Jacobson, 1994; Russell, 1991).

Whether or not further research clarifies the relation between low to moderate levels of alcohol during pregnancy and adverse birth outcomes, the universal prevention message for FAS is a conservative one that encourages abstinence prior to conception and throughout pregnancy as the safest course. This was articulated by the Surgeon General in 1981 (U.S. Public Health Service, 1981). One can understand that the public health message encourages total abstinence. However, this message is potentially problematic for some individuals—women, their partners, and even some in the medical community—because it seems to contradict years of experience. Current data from three separate surveys suggest that approximately 20 percent of pregnant women drink alcohol at some level during pregnancy (CDC, 1995b; NIDA, 1994; Serdula et al., 1991). The vast majority of the babies born to these women show no overt signs of damage. Therefore, it is sometimes hard to convince these women that they should not have consumed alcohol or that they should not consume it during the next pregnancy.

Public health messages must be simple and can never fully explain the scientific and medical facts and uncertainties behind the message. If further research demonstrates a causal relation between low or moderate levels of alcohol consumption and less severe or complete manifestations of neurobehavioral damage than seen in FAS, ARBD, or ARND, as has been hypothesized, then this most conservative message of total abstinence will have been wise and reasonable.

An obvious example of a universal prevention intervention specific to FAS is warning labels on alcoholic beverages (see Box 7-1) or similar signs posted in restaurants or bars. These interventions are mandated by federal and state law. They are delivered to and accessible to everyone who drinks alcohol, including all pregnant women, not just those at high risk based on either population-based factors (selective prevention interventions) or individual factors (indicated prevention interventions) of delivering a baby with FAS. Many groups, such as the March of Dimes, the American College of Obstetrics and Gynecology, and drug store chains, have put out pamphlets with information about FAS; the National Organization on Fetal Alcohol Syndrome recently sponsored public service announcements about FAS by popular musicians Bonnie Raitt and Queen Latifah.

Health care providers can and should engage in universal prevention interventions. Visits to family practitioners and to obstetrician gynecologists offer the opportunity for brief messages about the importance of responsible alcohol use and for providing general information about the risks of alcohol to the fetus (American College of Obstetricians and Gynecologists, 1994). It should be standard

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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BOX 7-1
Warning Label on Alcoholic Beverages

GOVERNMENT WARNING: (1) ACCORDING TO THE SURGEON GENERAL, WOMEN SHOULD NOT DRINK ALCOHOLIC BEVERAGES DURING PREGNANCY BECAUSE OF THE RISK OF BIRTH DEFECTS.

(2) CONSUMPTION OF ALCOHOLIC BEVERAGES IMPAIRS YOUR ABILITY TO DRIVE A CAR OR OPERATE MACHINERY AND MAY CAUSE HEALTH PROBLEMS.

SOURCE: Public Law 100-690, Section 204.

medical practice to talk to women about their alcohol consumption (Cefalo and Moos, 1995; Mullen and Glenday, 1990) and this appears to be more common now than in the past. An increase in these activities is part of the Healthy People 2000 goals (see Table 1-1). As universal interventions such messages would be brief, delivered to every patient, and almost generic. More targeted messages and questioning would depend on whether the woman drinks and is pregnant. These are discussed under selective interventions.

While universal prevention activities in isolation may have had some effects, there has been no data found that demonstrates a change in the prevalence of FAS in response to such efforts. As discussed in Chapter 5, there are no definitive data on the prevalence or incidence of FAS. According to some surveys, its incidence appears to have increased (CDC, 1995a). This is most likely due to improvements in case identification, rather than a true increase in incidence. Therefore, as discussed in Chapter 5, proxy measures of the impact of prevention activities are appropriate to consider. Relevant proxy measures might include knowledge, attitudes, and beliefs, as well as prevalence of drinking by pregnant women.

Universal interventions seem to have increased the general knowledge of FAS and related problems. Data from the National Health Interview Survey indicate a statistically significant increase between 1985 and 1990 in the number of people ages 18 to 44 who had heard of FAS, who agreed that heavy drinking (as defined by each respondent) carries pregnancy-related risks, and who could correctly identify FAS as a birth defect (other choices were that the baby was born drunk or addicted to alcohol) (Dufour et al., 1994). However, those same data show that in 1990, a small percentage of people believe that FAS means that a baby is born drunk, 60 percent of all men and women between 18 and 44 years of age who had heard of FAS thought it referred to an alcohol-addicted baby, and only 29 percent of all women of childbearing age could correctly describe FAS as a birth defect.

Careful analysis of a study on the impact of the alcoholic beverage warning label on the drinking of approximately 3,500 pregnant women shows that after

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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introduction of the warning label, pregnant women who drank very little (the equivalent of less than one mixed drink per day) decreased their alcohol consumption by an amount equivalent to 1 ounce of beer per week (Hankin, 1994). Pregnant women who drank more (the equivalent of more than one mixed drink per day) did not change their drinking behavior. These data suggest that universal prevention interventions might have little direct impact on FAS, ARBD, or ARND.

Data suggest that many women cut down their consumption of alcohol while pregnant (Serdula et al., 1991). Some pregnant women do not drink simply because the state of pregnancy decreases the palatability of alcohol for them. However, it is possible that increasing awareness of FAS and risks to the fetus have contributed to the decreases. Nevertheless, data indicate that women who drink heavily do not cut down their consumption of alcohol while pregnant. Because it is these women who are at risk for giving birth to an FAS child, it seems that universal prevention activities would have had little impact on the incidence of FAS. If future research suggests that low or modest levels of alcohol are associated with damage to the fetus other than FAS, ARBD, or ARND, then universal prevention interventions might decrease the incidence of those more subtle effects.

SELECTIVE PREVENTION INTERVENTIONS

Selective prevention interventions are targeted to people who are at greater risk for a particular outcome because they are members of a subgroup known to be at higher risk than the general population. These interventions involve different levels of targeting and intensity compared to universal prevention interventions. Some selective prevention is stimulated by general public information (universal prevention). A trickle-down effect of information may occur among those who are in a vulnerable state and thus at higher risk; and thus, the broadly dispersed universal prevention information on alcohol and pregnancy may or may not have a greater effect on vulnerable populations than on the general population. However, a trickle-down effect is not sufficient (Fitzgerald, 1988), and effective interventions must be devised to specifically target people who are members of high-risk groups.

Targets of selective prevention for FAS, ARBD, and ARND include women in the reproductive age range who drink alcohol. This is a very large and heterogeneous population. Chapter 6 includes a discussion on women's drinking and relevant risk factors. In general, a risk reduction approach to prevention and treatment of alcohol abuse in pregnancy would be strengthened by increased scientific knowledge about personal and social risk factors for drinking by pregnant women.

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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Population-Based Risk Factors for Giving Birth to an FAS Child

The epidemiologic literature related to FAS clearly identifies several risk factors for giving birth to an FAS child. First, and most obviously, is consumption while pregnant of large quantities of alcohol—either continuously or in risky patterns, such as bingeing–although there are many children diagnosed with FAS for whom a good history of maternal alcohol consumption is not available. For those women who have had a baby with FAS and for whom alcohol consumption is known, the levels, pattern, and frequency of alcohol consumed have typically been high. However, as described in Chapter 5, a high proportion of women who abuse alcohol while pregnant do not give birth to a child with FAS. Alcohol is not unlike most teratogens in that not all fetuses, not even dizygotic twins, are equally affected by the same amount of exposure. The epidemiologic literature identifies other risk factors for alcohol use during pregnancy: age, race, marital status, smoking level, and SES (see Chapter 6). Special selective prevention interventions could be designed based on these factors.

Role of the Father

Because the Committee to Study Fetal Alcohol Syndrome views the targets of FAS prevention activities as appropriately including more than just women, the partners of women who drink could be included in selective prevention activities as well. In contrast to the attention devoted to the influence of maternal factors on pregnancy outcome, data on the possible role of paternal factors are sparse. The association between alcohol exposure in utero and FAS, ARBD, and ARND is well established. Maternal alcohol exposure causes FAS. Similarly, the important social, psychological, and behaviorally supportive role that the male partner plays in a healthy pregnancy is well established and cannot be emphasized too strongly. However, the possible biophysiological contribution of paternal alcohol consumption to an adverse pregnancy outcome is not well understood. The animal literature suggests that male exposure to alcohol might result in some damage to sperm, and thus affect the fetus. Data from animal models suggest that paternal alcohol exposure may affect organ weights, hormone secretion, and immune response in the offspring (Abel, 1993; Abel and Blitzke, 1990; Abel and Tan, 1986; Cicero, 1994; Hazlett et al., 1989), but paternal consumption of alcohol does not cause FAS.

Since women who drink heavily tend to associate with men who also drink heavily (Jacob and Premer, 1986; Russell, 1991), and many children with FAS have fathers who abuse alcohol (Abel, 1983), there is a possibility that some of the anomalies now attributed to the teratogenic effects of maternal drinking may be exacerbated by paternal drinking. Clarification of this issue, including the possible mechanisms of paternal alcohol effects, awaits further research.

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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Regardless of whether future research indicates a direct role for prenatal paternal alcohol exposure in birth defects other than FAS, ARBD, and ARND, prevention efforts directed at men are appropriate and important for the influences that men have on women's drinking. For men, emphasis could be placed on the important social, psychological, and behavioral role they can play in supporting a healthy pregnancy. When appropriate, men should be encouraged to enter treatment for alcohol abuse, both for their own health and well-being and to make it easier for the pregnant woman to stop drinking. However, since many women who are at high risk for FAS are unmarried, in very unstable relationships, or both, it is important to tailor interventions to these situations. Contracts with other significant persons or with an entire at-risk community might be useful, including extended family, influential peers, and possibly bartenders. Boxes 7-2 and 7-3 represent family- and community-wide pledges related to drinking during pregnancy that are used by two Native American communities. These approaches seem to have promise for some communities but have not been evaluated.

BOX 7-2
Sample Vision and Mission Statements

Here is an excellent example of a vision and mission statement developed by the prevention leaders of the American Indian reservation community of Zuni Pueblo, New Mexico. It is positive, uplifting, value-oriented, and it encapsulates the cultural and humanitarian reasons for their FAS prevention efforts. It is also accompanied by a four-page list of problem statements, goals, objectives, barriers to overcome, and outcome measures.

Vision Statement

Zuni will be a community that affirms and accepts the cultural values of the sanctity of life and the values of women's and men's roles in nurturing the healthy development of infants and children. Young people will promote supportive roles for each other in developing healthy lifestyles with a sense of unity within the community.

Mission Statement

''Keep the tradition by working together for generations of healthy babies." The FAS Coalition will promote the coordination of community services for prenatals and their families. Community resources will be committed to helping young people create healthy lifestyles within the Zuni culture.

(Pueblo of Zuni, 1993)

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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BOX 7-3
Family Pledge: Spokane Tribal Fetal Alcohol Syndrome/
Fetal Alcohol Effect Office

• MY FAMILY IS THE MOST IMPORTANT PART OF MY LIFE.

• MY FAMILY INCLUDES ALL THOSE BORN BEFORE ME, ALL THOSE BORN SINCE MY AND BIRTH AND ALL THOSE THAT HAVE YET TO BE BORN.

• I WILL DO ALL I CAN TO PROTECT MY FAMILY FROM HARM.

• I WILL PROTECT THOSE YET TO BE BORN BY BEHAVING AS A WARRIOR.

• TRADITIONAL INDIAN BELIEF HOLDS THAT ALL WOMEN AND CHILDREN ARE SACRED AND RESPONSIBLE FOR THE FAMILY'S ANCESTRAL SURVIVAL.

• AS A WARRIOR, I WILL PROTECT THE UNBORN CHILD FROM THE EFFECTS OF ALCOHOL BY NOT DRINKING ALCOHOL MYSELF OR SEEING THAT THOSE WITH CHILD DO NOT DRINK ALCOHOL.

• BY SIGNING THIS, I SWEAR ON MY FAMILY'S HONOR TO KEEP THIS PLEDGE.

SIGNED ___________________________                                       DATE _______________

SOURCE: Fetal Alcohol Prevention and Education Family Album, Developed by the Spokane Tribe of Indians Fetal Alcohol Program; Spokane Tribal Community Action Team, Wellpinit, Washington.

Role of Health Care Professionals

Finally, increasing the awareness of health care providers will indirectly act as prevention interventions. Health care providers should be encouraged and educated about FAS. Clinicians should be trained to question women in an appropriate manner about their drinking and contraceptive histories. If a woman drinks alcohol and has other risk factors for FAS, health care providers should deliver selective or indicated prevention interventions, and this requires training and preparation. Clinicians should be prepared not just to question women about their alcohol abuse, but to discuss all aspects of alcohol use. This could serve to advise women who deny an alcohol abuse problem and to reassure those who might have had very minimal exposure before pregnancy was recognized. This might alleviate guilt in some women who don't understand the magnitude of exposure associated with fetal risk.

While it is easiest to identify alcohol-related problems among those who are most severely affected, the challenge for primary health care providers is to identify affected individuals early in their involvement and to intervene in a timely and meaningful manner. The importance of screening for problem use of

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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alcohol and the role of the primary health care professional in prevention, brief office interventions, and referrals for formal treatment cannot be overemphasized.

The primary health care provider can play an important role in the identification of alcohol-related problems in women. Obstetrician gynecologists and other primary health practitioners who provide health care to women often serve as counselors for questions and concerns related to women's general health and reproduction, and have opportunities to advise women about the potential risks of alcohol use. Annual routine health visits and pre- and postnatal visits provide multiple opportunities to discuss alcohol and the effects of alcohol consumption on health. Routine questions about and assessment of alcohol intake give women opportunities to ask questions about drinking during pregnancy and provide health care providers with opportunities to give advice and address the health of women whose alcohol use may put them at risk for adverse outcomes, especially during pregnancy. Such questioning is recommended as standard procedure in preconceptional and prenatal care.

Screening Instruments

The purpose of screening is to identify health problems or risks in time for intervention to prevent serious consequences such as FAS. Several screening tools are available to help identify women who potentially have alcohol abuse problems. Someone who is likely to be an alcohol abuser as indicated by screening should undergo a more thorough assessment of her alcohol use. Relevant information would include, for example, quantity, frequency, and pattern of alcohol use, and level of dependence.

Several authors recommend the use of the CAGE test (see Box 7-4). The

BOX 7-4
CAGE Test

C Have you ever felt you ought to Cut Down on your drinking?

A Have people ever Annoyed you by criticizing your drinking?

G Have you ever felt bad or Guilty about your drinking?

E Have you ever had a drink first thing in the morning to steady your nerves or get rid of a hangover (Eye-Opener)?

The CAGE test is a screening tool for identifying risk drinkers. Each positive answer is scored as 1 point. 2 or more points is considered as evidence of possible risk drinking.

SOURCE: Ewing JA. Detecting alcoholism: The CAGE questionnaire. Journal of the American Medical Association 1984:252;1905-1907.

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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BOX 7-5
T-ACE Test

T How many drinks does it take to make you feel high (Tolerance)?

A Have people ever Annoyed you by criticizing your drinking?

C Have you ever felt you ought to Cut Down on your drinking?

E Have you ever had a drink first thing in the morning to steady your nerves or get rid of a hangover (Eye-Opener)?

The T-ACE test is a screening tool for identifying risk drinkers. The Tolerance question is scored as 2 points if the respondent reports needing more than two drinks to get high. The other questions are scored as 1 point each for a positive answer. Scores of 2 or more are considered evidence of risk drinking.

SOURCE: Sokol RJ, Martier SS, Ager JW. The T-ACE questions: practical prenatal detection of risk-drinking. American Journal of Obstetrics and Gynecology 1989; 160:863-868; discussion, pp. 868-870.

BOX 7-6
TWEAK Test

T Tolerance: How many drinks can you hold?

W Have close friends or relatives Worried or complained about your drinking in the past year?

E Eye-Opener: Do you sometimes take a drink in the morning when you first get up?

A Amnesia: Has a friend or family member ever told you about things you said or did while you were drinking that you could not remember?

K (C) Do you sometimes feel the need to Cut Down on your drinking?

A 7-point scale is used to score the test. The Tolerance question scores 2 points if the responding reports the ability to hold more than five drinks without falling asleep or passing out. A positive response to the Worry question scores 2 points, and a positive response to the last three questions scores 1 point each. A total of 2 or more points indicates the respondent is likely to be a risk drinker.

SOURCE: Russell M. New assessment tools for risk drinking during pregnancy. Alcohol Health and Research World 1994; 18:55-61.

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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CAGE is an easily remembered mnemonic representing four brief questions that can be incorporated into routine practice (Ewing, 1984). The CAGE questions have proven useful in screening for alcoholism. The questions focus on cutting down on drinking, annoyance at criticism by others about drinking, guilty feelings about drinking or something done while drinking, and the use of an eye-opener. Although a positive response to the CAGE questions is not diagnostic of alcohol use disorders, answering yes to two or more questions is highly suspicious and warrants further evaluation. These steps are discussed under indicated prevention.

Another common screening test for alcoholism in adults is the Michigan Alcoholism Screening Test (MAST), a series of 25 questions, many drawn from earlier alcoholism surveys (Selzer, 1971). Alcohol screening tests such as the MAST and the CAGE, although not designed to screen pregnant women, have served as sources of items for other questionnaires that have been found useful in screening for at-risk drinking during pregnancy.

A variant of the CAGE, referred to as the T-ACE (see Box 7-5) substitutes tolerance for the question on guilt (How many drinks does it take to make you feel high?). The sensitivity of this simple four question screening test in gravid women who admitted to having had a drink of alcohol was such that it was able to detect 7 out of 10 women who drank enough to constitute an embryonic fetal risk. Another brief screening test, the TWEAK, has been found to be somewhat more sensitive but less specific in identifying women who are risk drinkers (Russell, 1994; see Box 7-6). It combines questions from the MAST, CAGE, and T-ACE tests that have been found to be most effective in identifying high-risk women drinkers (Russell, 1994).

Biomarkers

Given the limits of self-reports of alcohol use in many circumstances, an efficient, nonintrusive, valid, and inexpensive biologic marker of alcohol use would be an important tool for alcohol treatment research. Moreover, the availability of biomarkers might lead to earlier interventions for preventing FAS, serve as an indicator for evaluating FAS prevention outcomes, help identify instances of maternal under-reporting of alcohol use, and facilitate research on possible dose-response relations between alcohol exposure and adverse health effects, including FAS, ARBD, and ARND.

Although research continues to search for an ideal biomarker of alcohol exposure, no satisfactory laboratory test currently exists. Other issues concerning the applicability of biomarkers to women who drink during pregnancy, for example how to reach many of the women who give birth to FAS infants, need to be considered. Furthermore, suggesting such screening may pose difficulties for the relationship between the physician and the pregnant woman making further prenatal care less likely. This is vitally important given their lack of prenatal care

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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and usual entrance into the health care system at a late stage of pregnancy. A biomarker for alcohol abuse would not be a substitute for a health care provider's verbal assessment of alcohol use by at-risk women. Such interaction can sometimes be the first step in developing a supportive relationship that could be crucial to the woman's progress in achieving abstinence or, at least, moderation. Biomarkers can be very useful for research purposes. For example, they could help establish dose-response relations for prenatal alcohol exposure and adverse fetal outcome and could help delineate effects of alcohol from other confounders.

Studies will need to continue to explore the validity and efficiency of possible tests, examine the specific impact of pregnancy in addition to gender, as well as the impact of other confounding variables including nutrition, age, parity, smoking, other substance abuse, and preexisting illnesses and conditions. The validity of biomarkers is based on both a test's degree of sensitivity and specificity of an exposure. Sensitivity represents a test's ability to identify correctly those who have been exposed or who have the disease, while the specificity of a test identifies correctly those who have not been exposed or who do not have the disease (Mausner and Kramer, 1985).

To date, several laboratory tests, including blood alcohol levels, creatine phosphokinase, D-glucaric acid, urinary dolichol, and erythrocyte d-aminolevulinic acid dehydrase, are being explored as possible markers. Some may indicate recent alcohol exposure, other chronic alcohol exposure, and other liver damage, the latter finding suggesting possible chronic alcohol abuse. Overall, however, the clinical usefulness of these markers thus far have been less than promising.

The breath analyzer measures alcohol in the breath and has become the "gold standard" for detecting recent consumption of alcohol. However, blood alcohol levels are only reliable when blood is tested within the first 24 hours of the ingestion and are of limited value in diagnosing chronic alcohol abuse. Creatine phosphokinase (CPK) is an enzyme found in large quantities in the brain and in skeletal and cardiac muscle, but is absent from the liver. Fifty percent of all alcoholics appear to have elevated levels of CPK. Unlike many markers, therefore, CPK can be elevated with or without liver disease since it is not an index of liver function. However, due to confounding variables among alcoholics, CPK is considered both insensitive and nonspecific for diagnosing chronic alcohol abuse and alcoholism. D-Glucaric acid is the end product of glucuronic acid metabolism. When alcohol is ingested, the alcohol becomes a catalyst inducing the enzymes involved in the synthesis of D-glucaric acid allowing urinary D-glucaric acid levels to be used as screening tests for alcohol abuse. Unfortunately, discrepancies have been reported which would limit the validity of this test (Mihas and Tavassoli, 1992).

Urinary dolichol and erythrocyte d-aminolevulinic acid dehydrase tests are still under investigation as possible biomarkers for alcohol exposure. Although urinary dolichol has been found to be an indicator of alcohol abuse among chronic

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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alcoholics and in their offspring, dolichol levels can be confounded by age, Alzheimer's disease, and metastatic cancers, thus decreasing the sensitivity and specificity of the test. Erythrocyte d-aminolevulinic (ALA) acid dehydrase is an enzyme involved in heme biosynthesis that has been found to be lowered in over 90% of alcoholics. Erythrocyte ALA dehydrase activity does remain depressed for approximately 1 week in alcoholics after withdrawal from alcohol but only for 24 hours in nonalcoholics. As a result, laborious (and therefore expensive) methodology and the time-dependent nature of the test have hampered its use in clinical settings as an appropriate test for alcohol abuse (Mihas and Tavassoli, 1992).

Several promising markers for detecting alcohol consumption and abuse include gamma glutamyl transferase (GGT), aspartate aminotransferase (AST), alanine aminotransferase (ALT), alkaline phosphatase (AP), mean corpuscular volume (MCV), acetaldehyde adducts, and carbohydrate-deficient transferrin (CDT). These are described in more detail here. Studies indicate that several of these tests, particularly in combination, show sensitivity and specificity. Several have been analyzed for gender differences and the effect of pregnancy and one has been analyzed for its relation to fetal outcome.

Gamma glutamyl transferase GGT is a cell-membrane bound glycoprotein that catalyzes the transfer of the gamma-glutamyl moiety of glutathione to the various peptide acceptors. GGT is found in various tissues throughout the body including the liver, kidney, spleen, pancreas, brain, and heart (Mihas and Tavassoli, 1992). Although the mechanism by which serum GGT is heightened from chronic alcohol consumption has yet to be defined, GGT has become a widely used laboratory screening test for alcohol abuse and alcoholism because of its proven sensitivity (39-78%) and specificity (11-50%) in detecting alcoholic liver disease (Gjerde et al., 1988; Stibler et al., 1979). However, the validity of the test may be hampered by the fact that elevated GGT serum levels occur in both alcoholic and nonalcoholic liver disease, as well as in individuals taking drugs that induce hepatic enzymes (Mihas and Tavassoli, 1992).

Aminotransferases Aspartate aminotransferase (AST) or glutamate oxaloacetate transaminase and its correlate, alanine aminotransferase (ALT), represent the most frequently measured enzymes for liver disease and the most sensitive indicators of hepatocyte necrosis. Serum AST becomes elevated as result of abnormal hepatocellular membrane permeability and leakage and has been found in patients with all forms of liver disease. However, since toxic effects of alcohol may also manifest itself in other organs besides the liver, the incidence of elevated serum AST varies significantly among alcoholics and has a sensitivity value of 31-64%, as well as an extremely low specificity since it will be elevated with liver disease of any kind. As a result, AST is viewed as an unreliable marker when used alone. Mitochondrial AST has, however, proven to be effective in

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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recognizing alcoholic liver disease because the mitochondrial toxicity of alcohol occurs before liver cell necrosis takes place (Mihas and Tavassoli, 1992). On the other hand, the mitochondrial correlate of ALT, alanine aminotransferase, however, has not proven to be a useful marker of chronic alcoholism or of alcoholic liver disease with a sensitivity range of 37-47% and low specificity (Gjerde et al., 1988; Stibler et al., 1979). In theory, the ratio of ALT to AST may be of some use.

Alkaline Phosphatase Alkaline phosphatase (AP) is an enzyme that hydrolyzes organic phosphate esters in an alkaline environment creating an organic radical and inorganic phosphate. Present in most organs of the body, AP's elevation in liver disease due primarily to cholestatic disorders does not allow for distinction between intrahepatic and extrahepatic sources. The ratio of AP to GGT has been used as a rather sensitive marker of excessive consumption of alcohol, but the incomplete understanding of its biosynthesis has limited its value in diagnosing patients (Mihas and Tavassoli, 1992).

Mean Corpuscular Volume Many alcoholic patients have an elevated erythrocyte mean corpuscular volume (MCV) and mean red cell hemoglobin, as well as the presence of macrocytosis. The elevations are attributed to the direct effect of alcohol on developing erythroblasts and indirectly to the presence of folate deficiency. Simultaneously, macrocytosis will occur and persist until all alcohol consumption has stopped. Alone, the sensitivity of MCV is 26-71% and the specificity is 20-74% and has been found to detect only 30-40% of subjects with an alcohol problem. However, MCV, combined with other laboratory tests such as GGT and AP, appears to improve one's ability to detect chronic alcohol abusers (Harouki et al., 1983; Stibler et al., 1979).

Acetaldehyde adducts Acetaldehyde adducts form in the liver during chronic exposure to alcohol due to the activity of ethanol dehydrogenase and a microsomal ethanol oxidizing system. Currently, further tests are needed to assess the validity and usefulness of acetaldehyde adducts as a marker of chronic alcohol abuse and alcoholism. Blood acetate levels examine the byproduct, acetate, of alcohol oxidation which does not become metabolized in the liver. As the body attempts to eliminate alcohol from its system, a metabolic tolerance to alcohol occurs in the blood (Mihas and Tavassoli, 1992). The acetaldehyde adducts are measured usually in whole blood (WBAA) or as hemoglobin adducts (HbAA). With a sensitivity of 65% and a specificity of 92%, the test surpasses gamma glutamyl transferase (GGT) values making the blood acetate levels one of the leading biomarkers to detect early alcoholism (Korri et al., 1985).

A recent study demonstrated significant differences in WBAA levels between the general population and people who don't drink and between the general population and subjects enrolled in an outpatient alcohol treatment program

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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(Halvorsen et al., 1993a). Another study compared HbAA levels with results from the Self-Administered Alcoholism Screening Test (SAAST) in people who were abstinent, self-defined social drinkers, and people reporting for treatment for alcoholism (Peterson et al., 1990). Both analyses could distinguish the alcoholic group from the abstinent group and from the social drinkers. There was no difference between the abstinent group and the social drinkers. Although both measures correlated with each other, the SAAST seemed to be the more sensitive test.

Males have higher WBAA levels than women (Halvorsen et al., 1993b) and this gender difference is seen in the general population and in populations that don't drink (Halvorsen et al., 1993a). HbAA levels also increase with age, and this correlation is stronger for women than men.

HbAA levels have been studied in pregnant women who were followed until delivery (Niemala et al., 1991). The offspring were assessed and of 19 alcohol abusing women, 8 had infants diagnosed as having "fetal alcohol effects." HbAA levels were elevated in 68 percent of women who had alcohol-affected babies but only in 28 percent of the mothers who abused alcohol while pregnant but gave birth to non-affected babies.

Carbohydrate-deficient Transferrin Transferrin acts as the major iron transport of protein in the biological fluids of all vertebrates. Reduced contents of sialic acid cause an increase in the amount of higher isoelectric points than normal. These characteristics are readily detectable through separation by charge. Carbohydrate-deficient transferrin (CDT) for example is deficient in the terminal trisaccharide and can be distinguished its from transferrin by isoelectric point (Mihas and Tavassoli, 1992).

During subacute heavy alcohol consumption, CDT, a deglycosylated form of the liver synthesized protein transferrin, is produced and can be detected using conventional anion exchanger and radioimmunoassay technology. CDT levels do not return to normal for 2 to 3 weeks and thus is a marker of present or recent alcohol abuse, and occurs irrespective of liver disease. Following extensive testing and comparison with other biomarkers, CDT has proved to be one of the most sensitive and specific markers for chronic alcoholism with values ranging from 83-90% and 99-100% respectively (Stibler et al., 1979; Storey et al., 1987). It has been found that consumption of as little as 20 g/day of alcohol can be detected through CDT (Mihas and Tavassoli, 1992). These studies have indicated that this marker may be a more sensitive and specific indicator of alcohol abuse than the more established GGT (Anton and Moak, 1994).

In many studies, CDT has been described as being more specific and sensitive than GGT. However, both CDT and GGT have been found to discriminate between the sexes indicating a lower specificity in women for both tests. For years, studies have shown that GGT is normally lower in females than males, and that an elevated GGT level correlated with an increase in alcohol consumption,

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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but at greater levels in men compared to women. CDT was also found to have a lower sensitivity among women than in men (Anton and Moak, 1994).

It is imperative to understand the gender differences for these tests as more and more women present for and enter treatment. The seriousness of the consequences from alcohol abuse by women directly impacts their own health, as well as the health of their fetuses, during pregnancy. As a result, several studies, including one by Anton and Moak (1994), indicated that when GGT is combined with CDT, the sensitivity for detecting heavy alcohol consumption is improved among women, without losing specificity. Studies have also examined the possibility of confounding variables among women including the use of oral contraceptives and being pregnant or of menopausal status. Examining only CDT levels, these studies did not reveal that the above variables significantly influence CDT levels. However, it has been suggested that pregnancy decreases CDT, an effect opposite to alcohol consumption. Related studies, however, indicate that intake of estrogen or progesterone is likely to increase CDT levels and bias the results. Iron deficiency anemia, a quite prevalent condition in many women secondary to menstrual loss and pregnancy, may increase the total transferrin present (Anton and Moak, 1994). However, further studies are needed to explore this relationship and the impact of detecting alcohol abuse among women and especially among pregnant women. Without thorough investigation of the impact of pregnancy upon these tests it is impossible to make specific recommendations at this time for use in prenatal clinic.

Brief Interventions and Referral

Assessing risk during pregnancy through screening is an essential step toward educating pregnant women about the potential dangers of such behaviors. Once a problem has been identified, the health provider must make an appropriate intervention or treatment referral. Options range from brief interventions offered during the office visit to referral to a treatment specialist or a treatment program. The strength of the intervention should be proportional to the risk. In a stepped-care approach, intervention begins with the least intensive level of treatment for all affected individuals (e.g., brief interventions), with the provision of increasingly intensive levels of intervention (e.g., day treatment or hospitalization) for those who do not respond to lower treatment levels or who show evidence of alcohol dependence.

Justification to support the utility of health guidance and early intervention to prevent or treat alcohol abuse, comes from the belief that health messages provided by physicians, as sources of credible information, can affect behavioral change in alcohol use. Health messages offered by primary health care providers reinforce information already received from mass media or other group settings. Reinforcement of these messages in various settings has a greater effect on behavioral

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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change than do prevention interventions delivered by only one source. Lessons learned from smoking cessation intervention are a good example of this.

Effective brief interventions typically include an initial evaluation after which the patient is given structured feedback about her situation. This provides the patient with the opportunity to reflect in detail upon her present situation. Brief interventions also emphasize the patient's responsibility for change. A third common element is giving clear advice to the patient to make a change with a specific goal such as total abstinence, elimination of hazardous use, or seeking treatment. Alternatively, the patient can be presented with a menu of alternative strategies for changing alcohol or other drug use. Although providing advice is important, the patient must ultimately make the decision to change her alcohol use. Effective brief interventions also typically emphasize the empathic nature of the health care provider-patient relationships and seek to reinforce the patient's self-efficacy or optimism.

Interventions for alcohol problems should provide a patient with the necessary information, skills, and support to help her overcome barriers and utilize resources in order to change her behavior. Overtly directive and confrontational styles tend to evoke high levels of patient resistance, whereas a more empathic style is associated with less resistance and better long-term change (Miller and Rollnick, 1991).

The incorporation of simple screening tests and, where appropriate, brief interventions and referral for treatment, into the routine history taking of patients is advocated for all primary health care providers and can help in early identification of women with potential drinking problems. Brief interventions or referral to professionals trained in assessing and treating women who abuse alcohol may be the first steps toward recovery for some patients.

Professional Education

Although routine screening for alcohol use may be a desirable goal, much will have to change before it becomes a reality. Numerous studies show that physicians are uncomfortable with, and report a need for additional training in screening and management of alcohol-related problems. Educational programs should help primary care practitioners develop the clinical skills to assess and manage patients with alcohol problems. At a minimum, curricular time should be devoted to alcohol-related issues in medical schools, residency training programs, and continuing medical education courses (Adger et al., 1990).

Physicians and other health professionals in training need to develop a sense of responsibility and optimism toward their patients' alcohol or other substance abuse and confidence in their clinical skills related to caring for patients with these problems. Practitioners will develop these qualities only if they have adequate clinical exposure to patients who abuse alcohol (Bradley and Larson, 1994).

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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An FAS curriculum developed by the National Organization on Fetal Alcohol Syndrome (NOFAS) and the Center on Alcoholism, Substance Abuse, and Addictions at the University of New Mexico was pilot tested at the university's medical school in Albuquerque in 1992, and an adapted version has been in use there ever since. In addition, Georgetown University Medical School has offered the course for two years, and Northwestern University Medical School began offering it in 1995. The class includes both lecture and clinical activities. The goal is to provide a core knowledge of FAS, to teach recognition of FAS, and to improve skills both in detecting pregnant women's use of alcohol or other drugs and in counseling women about such use. Students are tested for relevant knowledge before and after the unit. Each school tailors the course to its own curriculum. The Northwestern program, for example, has been adapted in keeping with its problem-based learning approach. NOFAS hopes to extend use of the curriculum to additional medical schools as well as to nursing schools and nurse-midwife programs.

The national Residency Review Committee for Obstetrics and Gynecology now requires that residency programs include instruction on behavioral medicine and psychosocial problems, including substance abuse. The March of Dimes Birth Defects Foundation has produced a curriculum on substance abuse in pregnancy for use in such residency programs. It was developed in 1991 by the Greater New York March of Dimes and has been tested at a number of medical schools in New York City. The program is intended to improve the identification, care, and treatment of chemically dependent pregnant women and their children. It includes units on diagnosis of alcohol or other substance abuse, intervention and referral for such abuse, and relevant legal and ethical issues. The March of Dimes plans to publish the material and circulate it to residency programs in obstetrics and gynecology throughout the country.

Empirical Evaluation

There are studies showing that women who drink moderately or heavily are amenable to interventions offered in conjunction with prenatal care. Researchers at the Boston City Hospital Prenatal Clinic showed that counseling about drinking during pregnancy at routine prenatal visits led to decreases in alcohol use during pregnancy (Rosett et al., 1981a,b). The program offered counseling to women who were classified as heavy drinkers (5 or 6 drinks on some occasions and at least 45 drinks per month) and was oriented toward positive messages—stressing the increased likelihood of a healthy baby if the woman quit or decreased drinking, and improving the woman's self-esteem. Of 39 women who were counseled 3 or more times, over half were able to abstain or significantly moderate consumption of alcohol before the third trimester. Far fewer of the offspring born to the women who abstained or moderated their alcohol exposure were at or below the tenth percentile for growth measures than infants born to

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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women who continued to drink heavily throughout pregnancy. This program was seminal in showing that pregnant women who abuse alcohol could successfully be counseled to reduce their abuse and improve infant outcome.

In a research project at Grady Memorial Hospital in Atlanta, women who applied for prenatal care during a 33-month period in the early 1980s were asked about alcohol use (Smith et al., 1987). Most of these women were in their second trimester. All women were counseled about the negative effects of alcohol, tobacco, and other drug use on their infants and were advised to stop using these substances. Women troubled by the information or identified as having significant substance abuse problems were referred for supportive counseling. One-third of the women who received intervention stopped drinking for the duration of their pregnancy. Compared with those who stopped drinking, women who drank throughout pregnancy reported having started drinking at a younger age, were more likely to report heavy drinking on the part of their parents and siblings (especially their female relatives), had more evidence of alcohol-related physical problems, and were more likely to qualify for a diagnosis of alcohol dependence based on the third edition of the Diagnostic and Statistical Manual (DSM-III) (American Psychiatric Association [APA], 1980). These data and others suggest that interventions during pregnancy can lead some women to stop drinking. However, there are no clear data to predict who will respond to such interventions and who will continue to drink. Such information could be useful in targeting interventions.

A pregnant woman who scores positive on a brief screening and has other risk factors should be educated about FAS. This education should be more specific or more involved than that delivered routinely to every pregnant woman. Following a more detailed assessment of risk, interventions should be planned. These interventions will range, as appropriate, from brief interventions to intensive inpatient treatment for alcohol dependence. Epidemiologic literature shows that most women cut down on their drinking during pregnancy (CDC, 1995b). Whether this is secondary to a brief intervention by a health care provider is not known. Pregnancy is known to be an opportune time for many health interventions—women are more open to changes in their lives to help increase the likelihood of a healthy pregnancy (Cefalo and Moos, 1995; IOM, 1995; Mullen and Glenday, 1990).

Whether such interventions would decrease the incidence of FAS, ARBD, or ARND is not clear, since women who drink only moderately and who easily quit or cut down might not be those who would have gone on to have an FAS child, because their consumption levels or patterns are not sufficient to cause FAS. It is difficult to test this in controlled studies because the number of women needed in a study to identify a change in FAS rate would be quite large, and such a study would be very expensive. Whether decreasing consumption in moderate drinkers would decrease problems is not clear; some studies show better birth outcomes in women who stopped drinking during pregnancy compared with those who drank

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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heavily throughout pregnancy (Smith et al., 1987). Infants of women who continued to drink had a higher frequency of intrauterine growth retardation and neurobehavioral and morphological alterations (Coles et al., 1985, 1987; Smith et al., 1986). Many showed evidence of neonatal withdrawal syndrome as well (Coles et al., 1984). Follow-up showed a greater prevalence of developmental delays for those children whose mothers continued to drink throughout pregnancy (Brown et al., 1991; Coles et al., 1991).

INDICATED PREVENTION INTERVENTIONS

Indicated prevention interventions are targeted to high-risk individuals who are identified as having minimal but detectable signs or symptoms foreshadowing a condition or who have biological markers indicating predisposition (IOM, 1994). Studies show that a small proportion of women within some communities give birth to most of the FAS children (May et al., 1983). At present, the only biologic marker to identify an individual woman at high risk for giving birth to an FAS baby is having already given birth to an FAS child (May, in press). There is no prenatal test of fetal damage from alcohol that could be used to indicate a mother who should be aggressively treated to prevent further damage to the child.

The committee therefore considers the target for indicated prevention interventions to be a woman who abuses alcohol, including engaging in occasional binge drinking, while pregnant or at risk for being pregnant, particularly a pregnant or preconceptional woman who drinks alcohol and has already given birth to a child with FAS, ARBD, or ARND. As with selective interventions, the committee would also include interventions aimed at the partner, significant friends, or family members of a woman who fits the profile just described. Although other frameworks for describing prevention activities draw a line between prevention activities and treatment, indicated prevention of FAS includes treatment for alcohol abuse in a pregnant woman or for a woman highly likely to become pregnant. Thus, discussions about alcohol treatment for pregnant women and treatment outcome research are included in this chapter on prevention.

A first step in these prevention interventions is to identify the target. Brief screening tools for identifying high-risk women drinkers were described in the previous section. Women who score positive on such a screening tool should be given further assessment and consideration of a range of interventions ranging from brief interventions to formal treatment to encourage them to stop drinking. In cases where alcohol dependence, as described in DSM-IV, is diagnosed, referral for formal treatment should be made immediately. If brief interventions are indicated and on follow-up the woman continues to abuse alcohol, more intensive and targeted interventions including referral for formal alcohol abuse treatment should be called into play immediately. Women who abuse alcohol during pregnancy provide special challenges and thus far have been immune to most efforts to get them to stop or significantly reduce their drinking on their own. The

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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committee identified little controlled research into the most effective ways to treat pregnant women who abuse alcohol.

Indicated prevention can also be promoted through intensive professional education (Bowen and Sammons, 1988; Davis and Frost, 1984; Little et al., 1981). Recognition by professionals engaged in human services of maternal drinking and of risky practices might be effective in FAS prevention efforts. It is important to educate professionals in addition to obstetrician gynecologists, because many women who have FAS babies have woefully inadequate or nonexistent prenatal care and often do not seek obstetric services until delivery. Therefore, any health care provider who comes in contact with women who abuse alcohol should consider brief intervention therapies and referral to more formal alcohol abuse treatment, if appropriate, and counsel her regarding the risks of prenatal alcohol exposure. Women of reproductive age who abuse alcohol should also be offered referral and access to birth control information and services. Since prenatal alcohol damage involves two major behaviors, conception and alcohol consumption, separating the two behaviors is preventive for FAS (Masis and May, 1991). All forms of birth control, from short term to permanent, need to be offered and available to at-risk females and partners alike. In recent years, some FAS prevention projects of the Centers for Disease Control and Prevention (CDC) include contraception as part of the package of prevention services being studied. There are no data, yet, to show whether education and availability of contraception as part of a comprehensive FAS prevention program will decrease FAS, ARBD, or ARND.

Women Who Have Given Birth to a Child with FAS, ARBD, or ARND

The type and intensity of a preventive intervention should be appropriate to the risk involved; thus, intensive actions should be considered for a woman who has given birth to a diagnosed FAS child. In these cases, because of possible stigmatization of the mother or the child, as discussed in other sections of this report, diagnoses should be assigned conservatively by qualified dysmorphologists or other clinicians skilled in the diagnosis of FAS. Diagnostic criteria put forth in this report should be used for assessment purposes. However, once a verified case of FAS has been identified, intensive measures must be taken to reduce the impairment and disability that might accumulate with successive pregnancies and constitute a heavy burden on society and on the woman's health and well-being.

FAS studies consistently report that women who have had one definite FAS child, and who continue to drink, have progressively more severely affected children with subsequent pregnancies (Abel, 1988; Davis and Lipson, 1984; May et al., 1983). Subsequent pregnancies with similar levels of alcohol consumption generally produce more severely affected children, because both parity and age contribute to the extent of damage (Abel and Sokol, 1986; May et al., 1983). The

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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contribution of age might, in part, be related to length of time of alcohol abuse and the consequent liver damage. Intervention is best accomplished by assisting the mother (and, if possible, her partner) to change her substance use patterns, childbearing behavior, or both.

Some new research in this area might shed light on how best to do this. There are currently at least two controlled research projects comparing intensive versus standard education interventions. The project at Wayne State University includes women who had given birth to a child who did not necessarily have FAS, but who had admitted to drinking at high risk levels during that pregnancy; another, at University of Washington, involves women who have given birth to a child with FAS. These projects are new, and no results are available yet. However, it is not clear that the women in the first project are those who would give birth to an FAS baby and that widespread use of this type of intervention strategy would decrease FAS. If further research indicates more definitively prenatal effects of alcohol exposure at levels less than that which causes FAS, ARBD, or ARND, then decreases in drinking of any sort would be a valuable goal of prevention intervention for birth defects.

There have been some attempts at forced treatment and incarceration of pregnant woman who abuse illegal substances, particularly crack cocaine. These measures raise complicated ethical and legal questions. Mandated incarceration might decrease exposure of a particular fetus to alcohol (although alcohol and other drugs frequently are available in jails) and, therefore, decrease the risk of FAS or the severity of damage already incurred. However, there is evidence of unintended consequences with negative implications for prenatal care and birth outcome that make these actions problematic solutions to a medical and public health problem. Women who abuse illegal substances and who know that contact with health care systems might reveal this drug use and lead to incarceration or to removal of children from their care generally do not stop abusing, they simply do not seek medical care (Blume, in press; Geshan, 1993). Because alcohol is a legal substance, there have been fewer attempts at using such measures with women at risk for FAS. At least one Native American community has used tribal laws to allow for the enforced incarceration of pregnant women at very high risk for FAS. Treating a medical problem within the criminal justice system is unpalatable to the committee and viewed as highly unlikely to be effective. Mandated treatment for alcohol abuse in a therapeutic environment is a very different situation that has been debated for possible merits and many problems (Chavkin, 1991). At the simplest level, care that does not exist cannot be mandated. Many authors have documented the lack of treatment slots for pregnant women. Both the American Medical Association and the College of Obstetricians and Gynecologists oppose this approach.

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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Treatment of Alcohol Abuse and Dependence in Pregnant Women

For the comparatively small group of women who continue to abuse alcohol during pregnancy, formal treatment of alcohol dependence may be needed. There are a number of descriptions of comprehensive clinical treatment for pregnant alcohol-dependent women (Finkelstein, 1993; Jessup and Green, 1987; Rosett and Weiner, 1981a). The treatment programs described are typically broad, multimodal interventions that are intended to address the complex problems exhibited by this population. Thus, recommended treatments usually encompass medical and obstetric services, as well as alcohol and drug abuse services in the form of individual or group counseling, family therapy, referral to self-help groups, education about alcohol effects, parenting skills training, and case management. As mentioned earlier in this report, however, systematic data collection on characteristics of women who abuse alcohol during pregnancy has been rare. Thus, treatment programs for pregnant alcohol abusers have been based primarily on the availability of services and on clinical judgment, and in the relative absence of empirical data that could inform the conceptualization and development of treatments targeted to address the specific problems of this population.

Moreover, there are no data from randomized clinical trials evaluating treatment programs specifically for pregnant alcohol abusing women. Thus, the treatment packages or program components for pregnant alcohol abusers that have been described or implemented have not been evaluated specifically for (1) their ability to attract and retain pregnant women, (2) the impact of treatment programs or specific program components on maternal drinking behavior and related outcomes, or (3) the impact of these programs on infant outcomes. Similarly, there are no data from controlled trials on the optimal setting for such interventions (e.g., obstetrics-gynecology versus substance abuse treatment settings); the optimal intensity of treatment programs (e.g., hospital versus outpatient); the optimal duration of treatment; comparative effectiveness of alternate treatment approaches; and the relative efficacy of mixed- or single-gender programs.

Another barrier to evaluating the effectiveness of alcohol treatment for pregnant women is the paucity of appropriate services. For example, Chavkin and Kandall (1990) reported that 54 percent of drug treatment programs surveyed in New York City refused to accept pregnant women. Although several programs have been described and there have been a number of recent federal and state efforts to provide or expand treatment services for alcohol- and drug-abusing women, treatment programs may not be readily available to many of the women at risk.

Treatment Outcome Research on Alcohol Abuse in Women

The lack of data on effectiveness of treatment for pregnant women who

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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abuse alcohol parallels the need for more data on the effectiveness of treatment for women who abuse alcohol in general. Most alcohol treatment outcome studies have been done with predominantly male samples. Vanicelli (1984) reported that in 530 treatment evaluation studies conducted between 1952 and 1980, only 7 percent of the subjects were women. A more recent review (Toneatto et al., 1992) of 108 treatment outcome studies states that many studies that could report outcome by gender do not do so; among those that have, there is no consistent evidence pointing to gender differences in outcome. Given the low number of women in most treatment outcome studies, it is unlikely that such studies would have the power to detect significant differences in outcome by gender. The low number of women included in most treatment outcome studies also limits the generalizability of findings to other samples of substance-abusing women. Furthermore, in cases where gender differences in treatment outcome are found, it is often unclear whether those differences are due to gender or are more directly associated with other prognostic factors that may vary with gender (e.g., SES, psychiatric disorders, marital status, age of onset).

Several important questions regarding treatment effectiveness for substance abusing women have not been addressed. There is at this time no strong evidence of gender differences in the determinants of treatment seeking, treatment retention, or outcome (IOM, 1990; McLellan et al., 1994); of modalities that may be better for women than for men; or of relative relapse in female versus male substance abusers. Research has not evaluated whether the multicomponent package approaches commonly recommended for substance-abusing women are more effective than unimodal approaches, although one controlled trial has suggested better outcomes for women in a single-gender program than in a mixed-gender program (Dahlgren and Willander, 1989). It should be noted that treatment content, duration, and intensity have not been well specified in many of these studies (e.g., through specification of treatments and monitoring of treatment implementation). It has therefore been difficult to evaluate systematically whether particular types of treatment, or treatment components, may be better for women than men.

Given a lack of strong evidence of the differential effectiveness of treatment for women and men at this time, treatment approaches that have been demonstrated to be effective for broad clinical populations could also be effective for women at risk for delivering infants with FAS, ARBD, or ARND. However, the effectiveness of approaches that have been evaluated primarily in nonfemale samples for women drinkers or women at risk for delivering infants with FAS, ARBD, or ARND should not be assumed. It should also be noted that at present there is no single treatment with demonstrated superiority of effectiveness for alcohol abuse (IOM, 1990; Miller and Hester, 1986). This implies the need for research on the applicability to pregnant alcohol abusers of a range of treatments with demonstrated effectiveness in the general clinical population. Strategies that have empirical support among clinical samples of alcohol-abusing individuals

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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and may warrant evaluation as treatment for women at risk of delivering infants with FAS, ARBD, or ARND are reviewed briefly below, in order of intensity of treatment services. A model of treatment for pregnant women whose drinking puts them at risk for delivering an FAS infant may be stepped care, in which programs include a broad range of treatment intensities, from brief outpatient treatment to intensive residential treatment.

As discussed earlier, there is good evidence for the effectiveness of relatively low-cost, brief treatment approaches (Holder et al., 1991; IOM, 1990), such as motivational interviewing (Miller and Rollnick, 1991), for the treatment of alcohol abuse and dependence. These approaches attempt to mobilize the individual's own motivational resources to reduce or eliminate drinking. A feature that may make these approaches particularly appealing as a first-line intervention for women at risk of delivering FAS or ARBD infants is that they can be delivered in medical settings, where some women at risk may present (reviewed in Babor, 1994).

Cognitive-behavioral interventions, grounded in social learning theory, seek to impart generalizable coping skills that can be applied to reduce drinking and related problems. These approaches may be particularly promising for pregnant substance-abusing women in that they are geared to many of the problems noted among this population, including the use of alcohol and drugs in response to stress, lack of assertiveness and self-esteem, and links between psychiatric problems and substance use (IOM, 1990; Kadden et al., 1989).

Behavioral strategies, particularly those that seek to reinforce abstinence with positive incentives (e.g., Higgins et al., 1993, 1994; Stitzer et al., 1993) and those that address broad social problems (e.g., the community reinforcement approach), have been shown to be effective in retaining patients and reducing substance use in general clinical populations. Because these treatments can be tailored to target clearly defined outcomes (e.g., reductions in drinking, compliance with prenatal care), they could be adapted and evaluated among women at risk for delivering FAS infants.

Other, more intensive approaches, which have received little empirical evaluation but which have intuitive appeal for this population, should be evaluated. For example, although self-help groups, particularly Alcoholics Anonymous (AA), have been perceived as male oriented, evidence suggests that women may be more likely than men to attend self-help groups (Humphrey et al., 1991). The high level of social support provided in self-help groups and the recent development of specialized women's groups may make this a good option for pregnant women who abuse alcohol.

The most intensive level of care, that is, inpatient, residential, and day-treatment programs will be indicated for a proportion of pregnant alcohol-abusing women, particularly those with severe or refractory alcohol dependence, inadequate personal or financial resources, or severe comorbid psychopathology. These programs offer more structured and stable environments in which indicated

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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medical and substance abuse treatment, as well as evaluation of related psychosocial problems, can be instituted. As noted, these important resources are still rare.

Addressing Barriers to Research

The lack of controlled trials of treatments for pregnant women at risk for delivering FAS infants highlights the many challenges involved in conducting this type of research. However, these challenges can be met, and systematic controlled evaluation of treatments for pregnant substance-abusing women is not impossible (Carroll et al., 1995) and should be pursued. Ideally, systematic evaluation of well-specified treatment programs for pregnant alcohol abusers should be undertaken for the many specialized programs now being implemented; this should then be followed by randomized controlled trials that rigorously evaluate the most promising approaches. Program evaluations and controlled trials should include methodological features that are increasingly standard in alcohol treatment efficacy research, including careful description of the study sample on clinically important dimensions, use of standardized assessment instruments to characterize the study sample and evaluate outcomes, careful specification of all aspects of study treatments in manuals, and clear definition of target outcomes.

Methodological and ethical issues involved in program evaluation and clinical trials of treatment for pregnant substance-abusing women are complex for many reasons. First, clinical research involving controlled or comparison designs requires careful consideration of ethical issues, particularly control conditions, because it would be unethical in most cases to randomize pregnant, treatment-seeking women to no-treatment conditions. However, it would be possible to compare well-defined multimodal approaches to minimal ''standard" treatments, to study the components of treatment packages, and to evaluate the benefit of adding single innovative interventions to existing treatments. Second, investigators must carefully work through issues of confidentiality and protection of the women who agree to participate, as well as of their children. Third, as acknowledged earlier, the number of women at risk for delivering FAS infants is low; the number involved at any one time in a treatment program who are willing to participate in a randomized trial is likely to be even lower. Researchers interested in evaluating programs will thus be faced with the need to develop novel and active recruitment strategies and to consider the evaluation of women at risk in several sites. Because of the likely limitations on sample size, it may be necessary to report effect sizes rather than traditional measures of statistical significance.

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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MAINTENANCE AND AFTERCARE

Equally important to getting a pregnant woman who abuses alcohol to stop drinking is to keep her abuse under control after delivery. This will serve not only as prevention of FAS in future pregnancies, but also to improve the health and well-being of the mother, the newborn child, and any other children in the family. The literature in recent years suggests that an effective way to help alcohol-abusing women who had FAS children is through intensive case management (Bacon, 1988; Davis and Frost, 1984; Masis and May, 1991; Rosett and Weiner, 1981b; Weiner et al., 1989). Continuation of care into the post-partum period achieves or facilitates many goals. For example, this can eliminate the presence of alcohol in breast milk. It is standard medical advice that women who are breast-feeding not drink, which could further expose the infant to alcohol. Case management of women who have had one or more FAS children can help protect against further FAS children; help maintain better health status; coordinate substance abuse care throughout various institutions and agencies; and tailor care to specific social and medical needs of the woman, her family, and her children. Case management involves all members of the extended family and should include enlisting the positive action of the male partner. Children benefit from such efforts, too. Often children of FAS-producing mothers are in foster placement because of neglect or abuse. A major motivator for maintenance and aftercare is to improve the social and health status of the mother so that she can regain or retain custody of her children. Case management is also vital for FAS children. These children need a variety of services such as special education, special medical procedures, living assistance, behavioral therapy, and physical therapy. Many of these services will be needed throughout life (Dorris, 1989; Streissguth et al., 1986; Streissguth et al., 1991). This subject is discussed in Chapter 8.

An example of a case management approach is the Birth to Three Project in Seattle (Streissguth et al., 1993). Using existing services within a community, advocates work actively with each client to develop goals important to the woman herself. Postpartum women recruited into the program are those considered at the highest risk based on abuse of alcohol or other drugs during pregnancy, little or no prenatal care, and a lack of successful involvement with social service agencies. Important issues addressed initially include stable housing, substance abuse treatment with follow-up, health care, legal problems, and child custody. Longer-term issues include vocational and educational training, parenting skills, and social competence. The program was estimated to be very cost-effective.

PROGRAM EVALUATION

Prevention and treatment programs in all areas of substance abuse are infrequently evaluated, and rigorous evaluation is rare. For example, the Pregnant and

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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Post Partum Women and Their Infants (PPWI) program, administered by Substance Abuse and Mental Health Service Administration (SAMHSA) with funds contributed also by the Maternal and Child Health Bureau (MCHB) of Health Resources and Services Administration (HRSA), sponsored 147 demonstration-type programs for substance-abusing pregnant or postpartum women (National Center for Education in Maternal and Child Health, 1993). The types of interventions used in these programs were common sense approaches that seem, on consideration, to be reasonable. However, the program evaluation components are typically weak. For example, only half of the projects in existence in fiscal year 1993 had any type of evaluation. Most of these were pre- and posttest assessments of knowledge, attitudes, and beliefs. Of those, only half had a comparison group. Of those with a comparison group, a common comparison was with women who refused to participate in the program. Obviously, these programs provide important services to women in need but contribute little to a firm understanding of whether a program of interventions is effective at improving maternal and infant outcome or not.

Setting up an FAS prevention initiative with programmatic goals and objectives will facilitate evaluation of programs with multiple outcome measures, e.g., maternal outcome such as reducing alcohol consumption and infant outcome such as birth weight or FAS symptoms. Many prevention activities are evaluated for process outcomes only. In these cases, FAS is not the outcome measure. Rather, process evaluations focus on the number of women who enroll in the program, how many complete the program, and the like. The outcome measure of prime importance, however, would be changes in the incidence of FAS. Establishing the baseline prevalence of FAS in a community is the ideal first step in directly assessing the outcome of prevention efforts (May and Hymbaugh, 1983; May et al., 1983; Plaisier, 1989). This is a difficult outcome measure to use for several reasons. First, FAS is not very common. As described in Chapters 4 and 5, FAS is frequently difficult to diagnose except by highly trained persons. Thus, only large prevention programs with solid financial resources to include assessment by trained medical personnel would be able to detect changes in FAS incidence.

Therefore, proxy measures must frequently be used. As described in Chapter 5, proxy measures of infant outcome could be used. These might include the components most recognizable or easy to measure of the FAS diagnosis, such as head circumference or birth weight. Measuring knowledge gain and retention (Little et al., 1981, 1983; May and Hymbaugh, 1989), opinion and attitude changes, and surveys of behavior change all are possible proxy measures of success or failure in maternal outcome. However, they frequently represent measures of success with that part of the population at least risk for FAS, the moderate or minimal drinkers. For those at high risk, changes in relevant behavior are the most reasonable proxy measures. Thus, levels of drinking during

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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pregnancy must be assessed reliably and routinely. Research is needed to suggest the most sensitive and cost-effective proxy measures of FAS for these purposes.

PUBLIC HEALTH SERVICE-FUNDED RESEARCH

The National Institute of Alcohol Abuse and Alcoholism (NIAAA) funds or has funded several projects that would provide fundamental information necessary for the design of prevention intervention projects (e.g., on health beliefs and knowledge about alcohol use in pregnancy, the impact of alcohol warning labels, the development of laboratory tests to detect alcohol abuse). Many of the projects funded through the NIAAA alcohol and pregnancy program are more basic studies using animal models or human in vitro methods. The importance and utility of these clinical and animal studies is explained throughout the report. The mainstays of clinical research projects have been the long-term follow-up studies of alcohol exposure during pregnancy (i.e., the Cleveland, Pittsburgh, Seattle, Detroit, and Atlanta projects referred to repeatedly in the text of this report). These projects have provided much important information used for diagnosis and for the epidemiologic study of the effects of less than heavy alcohol consumption. Identifying women who have given birth to a child affected by alcohol, even if not affected by FAS, ARBD, or ARND, is an important component of indicated prevention efforts.

Other programs within NIAAA provide or could provide information potentially relevant to FAS prevention. For example, many of the prevention and treatment projects aimed at alcohol abuse in general, and epidemiological studies of women in the general population, might provide information translatable to pregnant women. Most of the prevention and treatment projects, however, as pointed out in the previous section, do not currently focus on pregnant women or even on women. Nevertheless, NIAAA-funded research has elucidated fundamentals of alcohol abuse prevention and treatment in general, and some projects funded in the future could focus on or at least include women and pregnant women.

Several of the CDC state-based prevention projects are involved in what the committee would consider universal prevention activities. The Colorado project is embarking on developing statewide media campaigns about FAS. The Alaska project is identifying statewide information and awareness needs about FAS and is working to identify how prepared health care providers feel about discussing alcohol issues with patients, including their comfort level with referring those in need for treatment. FAS workers in Oklahoma are developing and implementing education programs about FAS targeted to health care providers. The project in South Dakota, which is conducted in conjunction with the Indian Health Service, is working to change community attitudes toward drinking during pregnancy. There are currently no firm data from any of these projects with which to ascertain

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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their effectiveness—data that are crucial for decisionmakers who need to prioritize their increasingly sparse public health prevention resources.

Several of the CDC state and university projects involve activities that the committee would consider selective interventions. Many (e.g., Colorado, Kansas, and South Dakota) are explicitly working on identification of women at risk for substance abuse. The projects in Georgia, Colorado, and Oklahoma include the development of training materials for professionals to identify women at high risk for FAS. Two demonstration projects in Missouri offer alcohol education to high-risk women (i.e., women encountered in the Division of Family Services Alternate Care Program). The Missouri project will also offer family planning services to women in substance abuse treatment programs. The University of Cincinnati project is using a randomized controlled methodology comparing standard care versus intensive, prenatal intervention with pregnant drinkers. The outcome measures in this project will include maternal and infant characteristics.

The committee identified at least two CDC FAS prevention projects that are involved in gathering fundamental information relevant for what the committee defines as indicated prevention programs. The Alaska project is examining the social, medical, and reproductive histories of women who have given birth to at least one FAS child. The data could then be used as a framework for developing interventions aimed at these highest-risk mothers. The state-based program in Washington also includes efforts to identify characteristics of the biological mothers of FAS children and to identify, locate, track, and follow-up the biological mothers of children identified in the University of Washington FAS clinic.

SUMMARY

The detailed prevention measures described above represent a progression through a spectrum. Universal prevention is used to promote general knowledge and social conditions that serve to reduce substance abuse and to promote healthy pregnancy practices. Selective prevention targets groups that include people at risk. Indicated prevention is applied to individuals identified as at risk for adverse outcomes. The effects of heavy and persistent alcohol abuse on pregnancy are already established. If a woman or couple has diagnosed problems of alcohol or substance abuse, specific steps, indicated prevention action, must be taken to break the causal chain and to adapt to the needs and problems created by the maternal behavior. Such treatment steps for the mother are preventive for FAS.

The women who drink most heavily are the least likely to lower their alcohol consumption on their own during pregnancy, and they compromise their own welfare as well as the well-being of the larger community (May, 1991). Women who continue to participate in substance abuse and risky pregnancy practices, despite attempts at motivation and empathic approaches to change, are candidates for very intensive treatment.

At advanced stages of heavy drinking and alcohol abuse, a woman may no

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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longer be able to control her own health status (due to social, economic, medical, and psychological barriers). For such a woman, treatment for alcohol abuse as a means to prevent FAS could also be a means to enhance her ability to reduce her disability and to reenter a state of health, healthy behavior, and mainstream society. Many women who drink heavily are ostracized, which may discourage their entry into treatment or reentry to mainstream society (Blume, in press; May et al., 1983). The indicated level of prevention, alcohol treatment, and maintenance, when facilitated by well-trained case managers, can provide such a vehicle. If one wants to reduce the prevalence of FAS in a short period of time, using case-managers to institute indicated prevention, treatment, and aftercare might effect such change (Masis and May, 1991).

Recent studies show that while approximately 20 percent of all women continue to drink during pregnancy, most women reduce their consumption during pregnancy. Furthermore, women who abuse alcohol are a small subset of drinking women (Grant et al., 1994; Serdula et al., 1991). Therefore, indicated prevention, treatment, and aftercare are considered necessary only for a small proportion of the population.

RECOMMENDATIONS

The committee recommends that until such time as clear dose-response relationships are established, pregnant women and those about to become pregnant be counseled to avoid alcohol consumption throughout pregnancy.

The committee recommends greatly increased attention among sponsors of prevention initiatives, independent of the target population, to evaluating the effectiveness of programs implemented. This recommendation applies to all levels of prevention interventions.

The committee recommends that research efforts include comparisons of prevention methods at all levels in order to provide information to policy makers about relative costs and benefits.

Indicated prevention interventions:

The committee recommends that a high priority be placed on research efforts to design, implement, and evaluate prevention interventions that can effectively guide pregnant women who drink heavily to alcohol treatment. Research or programs should also include:

 

implementation of appropriate screening tools, including biomarkers of alcohol exposure, to identify women who are drinking moderate to heavy amounts of alcohol during pregnancy;

 

assessment of methods to involve women's partners and family members in interventions to decrease or stop drinking;

 

incorporation of comprehensive reproductive counseling and contraceptive

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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services in prevention and treatment programs for substance-abusing women;

 

assessment of the effectiveness and economic benefits of protocols for case management and follow-up of women, and of their families, who have given birth to a child affected by fetal alcohol exposure;

 

development of training programs for professionals in the identification of heavy drinking, and referral to appropriate regional centers or prevention services;

 

use of multiple outcome measures to assess the effectiveness of prevention initiatives; and

 

basic research in animal models to elucidate further the mechanisms of alcohol teratogenesis, which might lead to pharmacologic or other strategies for amelioration of the effects of alcohol exposure in utero.

Selective prevention interventions:

The committee recommends increased research efforts to design, implement, and evaluate selective prevention interventions to decrease risks of FAS, ARND, and ARBD through programs aimed toward women who are pregnant or may become pregnant, and who drink alcohol. Designing such interventions will be aided by further research assessing the contribution of personal and socio-environmental risk and protective factors that affect levels of drinking by women during pregnancy.

Where the utility of specific intervention programs has been established, the committee recommends broad implementation of successful prevention interventions. Programs developed or studied should include the following:

 

specific demographic groups that have been demonstrated to be at higher risk for FAS, ARBD, and ARND, as well as those who exhibit risk factors associated with moderate to heavy alcohol consumption during pregnancy; and

 

implementation of prevention efforts in a wide range of communities and media;

Universal prevention interventions:

The committee recommends that although data are insufficient regarding the effectiveness of universal prevention interventions, such interventions should be continued to raise awareness about the risks of FAS, ARBD, and ARND. However, the most important approach to universal prevention is probably the development of a medical environment in which concepts of the risk of FAS, ARBD, and ARND are incorporated into routine health care. Further education efforts to reach children and adults about FAS, ARBD, and ARND through health educational curricula and other means are recommended.

Suggested Citation:"7 Prevention of Fetal Alcohol Syndrome." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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It sounds simple: Women who drink while pregnant may give birth to children with defects, so women should not drink during pregnancy. Yet in the 20 years since it was first described in the medical literature, fetal alcohol syndrome (FAS) has proved to be a stubborn problem, with consequences as serious as those of the more widely publicized "crack babies."

This volume discusses FAS and other possibly alcohol-related effects from two broad perspectives: diagnosis and surveillance, and prevention and treatment. In addition, it includes several real-life vignettes of FAS children.

The committee examines fundamental concepts for setting diagnostic criteria in general, reviews and updates the diagnostic criteria for FAS and related conditions, and explores current research findings and problems associated with FAS epidemiology and surveillance.

In addition, the book describes an integrated multidisciplinary approach to research on the prevention and treatment of FAS. The committee:

  • Discusses levels of preventive intervention.
  • Reviews available data about women and alcohol abuse and treatment among pregnant women.
  • Explores the psychological and behavioral consequences of FAS at different ages.
  • Examines the current state of knowledge about medical and therapeutic interventions, education efforts, and family support programs.

This volume will be of special interest to physicians, nurses, mental health practitioners, school and public health officials, policymakers, researchers, educators, and anyone else involved in serving families and children, especially in high risk populations.

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