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Preventing Mental, Emotional, and Behavioral Disorders Among Young People: Progress and Possibilities 8 Screening for Prevention Broadly defined, prevention screening is a two-part process that first identifies risk factors or early phenotypic features (behaviors, biomarkers) whose presence in individuals makes the development of psychological or behavioral problems more likely, and then segments the relevant subset of the population to receive a unique preventive intervention. As outlined in Figure 8-1, screening can be carried out at the community level, focused on population-based risks (for universal prevention efforts, e.g., training of clerks to check for underage alcohol sales); at group or individual levels (for selective prevention efforts, e.g., screening for the risk factor, maternal depression, when children receive care in the emergency room); or at individuals based on their unique behaviors or biomarkers that may be prodromal features of mental, emotional, and behavioral (MEB) disorders (for indicated prevention efforts, e.g., screening for risk factors when a child’s grades in school fall unexpectedly). Screening for community-level and group- or individual-level risks is based on identification of risk exposures. Indicated prevention requires screening for individual characteristics. There is a long list of possible community-level exposures that represent risks. Examples include poverty, violence and other neighborhood stressors, lack of safe schools, and lack of access to health care. High-risk exposures for subsets of the population include maternal depression, separation of parents as a result of divorce or a death of one of the parents, physical or sexual maltreatment, any events that lead to placement of a child in foster care, and catastrophic events, such as suicide of a classmate. Individual characteristics are also numerous and can include behaviors or
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Preventing Mental, Emotional, and Behavioral Disorders Among Young People: Progress and Possibilities FIGURE 8-1 Schema of opportunities for screening and prevention. symptoms that do not yet qualify for a Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSM-IV) diagnosis; chronic disease and other functional impairments, such as neurodevelopmental disabilities; and genetic, environmental exposure, or other biological predisposing factors (see also Chapter 4). Screening at any of these levels will identify youth, individually or collectively, who should be candidates for preventive interventions, assessment, and (if indicated) specific treatment. Screening should be easily and quickly performed, affordable, and reasonably accurate as a detection tool. There are a number of screening measures and approaches related to MEB disorders that meet these criteria (Stancin and Mizell Palermo, 1997). However, for a number of reasons discussed in this chapter, screening for risks and behaviors or biomarkers associated with a higher likelihood of future MEB disorders has not been widely adopted. The idea of screening for risk factors is considerably different than screening for specific disorders, as is carried out in newborn screening for metabolic disorders that need immediate treatment, such as phenylketonuria. Nevertheless, identification of elevated risks can guide public investments and mobilize communities to pursue needed resources to reduce these risks. While individual risks and behaviors or biomarkers can be identified and receive attention through such settings as primary health care and the school system, there are few specifically identified systems for screening and follow-up at the community or group risk levels. One exception is the Communities That Care approach (see Chapter 11), which has a protocol for helping communities profile their community-level risk and
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Preventing Mental, Emotional, and Behavioral Disorders Among Young People: Progress and Possibilities protective factors to aid in selecting an intervention or interventions for implementation. This chapter outlines criteria for assessing the applicability of screening for selective and indicated preventive interventions, building on criteria published by the World Health Organization (WHO). It also addresses issues related to each of the three levels of screening—community, group, and individual. The chapter closes with conclusions and recommendations on where the field should move to further consider screening in the context of prevention. Although screening approaches have been used in a research context to identify potential participants in indicated preventive interventions, the focus here is on prevention in real-world environments. CRITERIA FOR SELECTIVE AND INDICATED PREVENTION SCREENING Fifty years ago, WHO established guidelines to use in determining the public health applicability of screening (Wilson and Jungner, 1968). The 10 basic principles, in various forms, are used today to assess applicability of biomarkers or other diagnostic information for presymptomatic detection of serious disorders. However, the WHO criteria were developed from the perspective of early detection of disease, with the goal of providing treatment before the disorder becomes symptomatic. For prevention, one of the goals of screening should be to identify communities, groups, or individuals exposed to risks or experiencing early symptoms that increase the potential that they will have negative emotional or behavioral outcomes and take action prior to there being a diagnosable disorder. Successful screening and preventive interventions can reduce diagnosable disorders that require treatment. Thus, considering screening in the context of prevention requires a shift in thinking and adaptation of some of the WHO criteria. For example, mental health screening targets both risk factors and early behaviors or biomarkers that predict MEB disorders. Table 8-1 presents a revised set of criteria that are likely to lead to successful prevention through screening at the individual level. We discuss below the extent to which the amended criteria are met. The MEB disorders to be prevented through identification of this risk factor should be a serious threat to mental health or increase the likelihood of substance abuse or delinquent or violent behavior. MEB disorders among young people result in significant personal and family suffering and substantial societal costs associated with service use and lost productivity (see Chapter 9). Available data on the prevalence of MEB disorders suggest that one in five or six young people is currently experiencing a significant disorder (see Chapter 2), and there are strong links between childhood and
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Preventing Mental, Emotional, and Behavioral Disorders Among Young People: Progress and Possibilities TABLE 8-1 Adaptation of World Health Organization Criteria to Prevention World Health Organization Criteria Adaptation for Selective and Indicated Prevention The condition should be an important health problem. The MEB disorders to be prevented through identification of this risk factor should be a serious threat to mental health or increase the likelihood of substance abuse or delinquent or violent behavior. The natural history of the disease should be adequately understood. The antecedent history of the disorder and its developmental link to target risk factors should be adequately described. There should be a treatment for the condition. There should be an effective intervention to address the identified risks or early symptoms and signs of the MEB disorder. Early preventive intervention should lead to better outcomes than a treatment after onset. Facilities for diagnosis and treatment should be available. Facilities or settings for screening and intervention should be available. There should be a latent stage of the disease. There should be identifiable risk or protective factors or a latent stage of the disorder to be addressed by prevention. There should be a test or examination for the condition. There should be validated screening tools or interview techniques to identify risks or early symptoms. Tools should have acceptable accuracy when compared with formal assessments. The test should be acceptable to the population. Screening approaches and guidelines should be acceptable to the population and not cause labeling. There should be an agreed policy on whom to treat. There should be agreed-on guidelines for whom to refer for assessment, prevention services, or treatment. The total cost of finding a case should be economically balanced in relation to medical expenditure as a whole. The cost of finding a case should be affordable, cost-effective, and reimbursable. Case-finding should be a continuous process, not just a “once and for all” project. Screening can be population-based or targeted to at-risk groups or individuals. It should be longitudinally implemented, as risks and early signs or markers of MEB disorders may develop over time.
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Preventing Mental, Emotional, and Behavioral Disorders Among Young People: Progress and Possibilities adolescent risk factors and specific MEB disorders. For example, parental depression greatly increases the likelihood of a child’s being depressed; similarly, the risk of schizophrenia or other major mental disorders is much higher among those with parents or siblings who have the disorder (see Chapter 4). The antecedent history of the disorder and its developmental link to target risk factors should be adequately described. Although the origins of most MEB disorders and problems are still incompletely understood, the temporal relationship between early behavioral phenotypes and DSM-IV diagnosable conditions has been documented extensively. There are valuable models of how antecedent risk factors relate to the onset of these disorders. The taxonomy of these disorders, although less precise than physical disorders, has also been standardized using DSM criteria. Perhaps most importantly for this discussion, many risk factors for MEB disorders are measurable with scientifically verified assessment tools, facilitating the linkage of their recognition to the onset of later MEB disorder outcomes. While protective factors are less thoroughly documented than are risk factors, they can be recognized in some cases and associated with mental health outcomes. There should be an effective intervention to address the identified risks or early symptoms and signs of the MEB disorder. Early preventive intervention should lead to better outcomes than treatment after onset. We note first that there are treatments available for most MEB disorders. However, the effectiveness of these treatments is highly variable. However, if these disorders can be prevented or delayed, a much larger benefit can be obtained than through early treatment. Parental concern about young children’s behavior is a strong risk factor for later emergence of MEB disorders meeting DSM-IV criteria (Perrin and Stancin, 2002). There is some evidence that reduction of risk or presymptomatic intervention prevents, delays, or modifies disorder symptoms. As discussed in Chapter 7, recognition of the risk for depression has led to interventions that reduce the incidence of the full-blown disorder. Interventions for families struggling with divorce have been protective for downstream MEB disorders in the children (see Box 6-9). School or community-wide interventions following a catastrophic event appear to reduce the occurrence of posttraumatic stress disorder (PTSD) in young people (Layne, Saltzman, et al., 2008). Many more such examples could be cited and undoubtedly will surface in the future. The ability to screen for adverse events or conditions has led to effective early interventions in several but not all situations. Prodromal identification of behaviors or biomarkers for schizophrenia could provide an intervention advantage; studies are suggestive but not yet
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Preventing Mental, Emotional, and Behavioral Disorders Among Young People: Progress and Possibilities conclusive that this screening improves clinical outcomes (see Chapter 7). Abused and neglected children are more likely to be abusive and neglectful when they become parents (an intergenerational risk factor) (Noll, Trickett, et al., 2009). It is potentially important to recognize, but there are limited studies that document effectiveness of a specific intervention for children or adolescents known to be abused that reduces their abusive behaviors as they mature. The rationale for screening is strong; however, a robust evidence base must be assembled to demonstrate where investment in broad screening efforts is effective and cost-efficient. In particular, studies should address identification of types of risks that can lead to mobilization of community resources to address risk. For some disorders, effective prevention strategies are available. Before implementing an individual screening strategy, it would be important to compare its impact with that of a universal strategy. For the prevention of conduct disorder, youth can be identified through screening of teachers and parents for those exhibiting aggressive behavior (Perrin and Stancin, 2002). A number of individual-level interventions are available, ranging from behavioral reinforcement with a mental health professional to long-term intervention, as used in the Fast Track project (see Box 6-9). Alternatively, universal preventive interventions have been shown to have lasting impact on those with the highest levels of aggressive behavior early on (Kellam, Brown, et al., 2008), and they do not encounter the kinds of stigma or labeling that occur from individual-level interventions. Where multiple levels of preventive intervention are available, universal interventions may serve as an informal screening mechanism, with those who do not respond to the intervention being identified for more targeted approaches based on elevated risk. We note that screening should target not only young people, but also their extended family members and caretakers as well as peers and community environments, including norms and policies, for example, around substance use. Home visitation has been one useful strategy for screening of relevant figures and experiences in a child’s life. For example, postpartum depression was detected in more than 40 percent of socioeconomically disadvantaged mothers by home visitation (Stevens, Ammerman, et al., 2002). Situational stresses, such as death of a parent, affect all family members (Melhem, Walker, et al., 2008). Screening for parental mental disorders, such as depression, PTSD, domestic violence, and substance use, is key to designing interventions to reduce children’s risk and has been recommended for primary care (Whitaker, Orgol, and Kahn, 2006) as well as emergency room (Grupp-Phelan, Wade, et al., 2007) settings. Preventing behavior problems in young children requires family-oriented strategies that address the needs of both parents and their children.
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Preventing Mental, Emotional, and Behavioral Disorders Among Young People: Progress and Possibilities Facilities or settings for screening and intervention should be available. Screening for risks or for precursors of MEB disorders is not limited by the availability of screening settings. Three settings appear to have particular advantages: (1) primary medical care, (2) schools, and (3) preschools or day care. However, none has become a site for the routine screening of children. Primary Care. A number of screening tools have been proposed for use in the medical office (Perrin and Stancin, 2002). One of the best indicators of risk for emergence of MEB disorders in the future is the presence of parental or caretaker concern about a particular child’s behavior. The office visit can screen for risk by routinely inquiring about parental concern. Computerized screening has demonstrated enhanced recognition of behavioral problems in the office setting (Stevens, Kelleher, et al., 2008). There are several barriers to widespread adoption of medical office screening for risks or behavioral indicators of future MEB disorder (Perrin and Stancin, 2002). First, most physicians, including pediatricians and their office staff, have not been trained to include screening in their routine well child or sick child visits (see Chapter 12). Second, good systems frequently are not in place to further assess children who are identified as being at risk. Many pediatric or family medicine offices are neither prepared to take necessary steps, nor are they linked to behavioral care capabilities (psychiatry, psychology, social work expertise) for follow-up of the screening outcomes. Third, in most medical office settings, neither public nor private payers will reimburse for behavioral screening. Early and Periodic Screening, Diagnostic, and Treatment (EPSDT), a Medicaid program, has been used largely to promote developmental screening. For a number of reasons, the intent of the program to include behavioral screening has not been fully realized; the EPSDT screening tools in nearly half the states do not address behavioral health issues at all (Semansky, Koyanagi, and Vandivort-Warren, 2003). States use a variety of tools with variable coverage of mental health and substance abuse issues (Judge David L. Bazelon Center for Mental Health Law, 2009). The state of Massachusetts, as the result of a court decision, has mandated behavioral screening for all children enrolled in Medicaid at each physician visit, starting in January 2008. Physicians’ practices are reimbursed $12 for each screening session, so compensation is not a barrier. The effectiveness of the screening and outcomes of children at risk in this program are as yet unmeasured. Assuring Better Child Health and Development (ABCD) is a program funded by the Commonwealth Fund and administered by the National Academy of State Health Policy. It has created two state health consortia, the second of which (ABCD II) employs standardized, validated screening tools to assess the mental development of young children and to provide follow-up services for those at risk. The successes of this program provide
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Preventing Mental, Emotional, and Behavioral Disorders Among Young People: Progress and Possibilities BOX 8-1 Assuring Better Child Health and Development Initiative The Assuring Better Child Health and Development (ABCD) Initiative is a program funded by the Commonwealth Fund and administered by the National Academy for State Health Policy. It is designed to strengthen the capacity of states to deliver early child development services to low-income children and their families through their Medicaid programs. Two state consortia were formed under the ABCD initiative. The first, ABCD I, created in 2000, provided grants to four states (North Carolina, Utah, Vermont, and Washington) to develop or expand service delivery and financing strategies aimed at enhancing healthy child development, including efforts to strengthen developmental screening, surveillance, and assessment efforts. The second, ABCD II, formed in 2004, is aimed at strengthening primary health care services and systems that support the healthy mental development of young children from birth to age 3 in five states (California, Illinois, Iowa, Minnesota, and Utah). The initiative was carried out primarily through a small number of pilot programs in clinical practice settings. Many of the states also included an effort to identify and address systematic policy barriers, including clarifying or amending state Medicaid policies. In an effort to improve the identification of children at risk for or with social or emotional development delays, the ABCD II consortium states each identified standardized, validated screening tools and encouraged pediatric primary care providers to use them as a routine part of their regular delivery of care. Each state sought tools that would accurately identify children who may need behavioral developmental care and follow-up services, be inexpensive and rapid to administer, and provide information that could lead to action. The final selections included the Ages and States Questionnaire® (ASQ), the Ages and Stages Questionnaire®: Social-Emotional (ASQ:SE), the Brief Infant-Toddler Social and Emotional Assessment (BITSEA), the Child Development Review, the Infant Development Inventory, the Parents’ Evaluation of Developmental Status (PEDS), and the Temperament and Atypical Behavior Scale (TABS). Most are designed to elicit information from encouragement that the primary medical care setting can effectively identify children who can benefit from early attention (see Box 8-1). Initial lessons from implementation of this program in Iowa have been made available (Silow-Carroll, 2008), but evaluation of the program is still in progress. Other efforts to screen for MEB disorders in the primary care setting include (1) routinely questioning adolescents about symptoms suggesting depression (ACGME, Adolescent Medicine Training Program Requirements), (2) surveillance (ongoing observation) and screening young children for behaviors suggestive of autism (Johnson, Myers, and the American Academy of Pediatrics Council on Children with Disabilities, 2007), and (3) screening for suicidal ideation (Institute of Medicine, 2002). All of these efforts span
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Preventing Mental, Emotional, and Behavioral Disorders Among Young People: Progress and Possibilities parents rather than through clinician observation, requiring minimal staff time to administer. Clinicians felt these tools also helped parents learn about child development, identify concerns, and organize questions prior to an appointment. ABCD II found that to ensure young children’s healthy mental development and to successfully change provider practices, it was necessary not only to improve screening of young children for potential social and emotional development problems but also to help families and clinicians access resources for appropriate follow-up services. Thus, the states also undertook efforts to identify existing resources for assessment and treatment, remove policy barriers to accessing those services, and facilitate referrals. All five ABCD II states were able to increase screening in selected practices, and most states also increased the percentage of children referred for services, including assessment, secondary developmental surveillance, child psychologist evaluation, rehabilitation, early intervention, and school services. There was no consistent measurement of follow-up services received after referral, and child outcomes as a result of screening and referral were not assessed. The states also initiated policy changes that improved program coverage, reimbursement, and system performance; worked with physician practices to test and spread practice innovations; and relied on key partnerships with other state agencies and provider organizations. Building on this work as well as other advances in the field, the ABCD Screening Academy was established in 2007. It provides technical assistance to help implement practices and policies designed to increase the use of developmental screening tools as part of the standard practice of well-child care delivered by primary care providers. SOURCES: Pelletier and Abrams (2003); Kaye, May, and Abrams (2006); Kaye and Rosenthal (2008). the boundary between screening for risk or early indicators and diagnostic efforts. Nevertheless, they offer the potential to intervene early and, in some cases, to prevent fully developed MEB disorders. Schools. Universal screening to identify students at risk for school failure or psychological or behavioral problems is increasingly recognized as an important professional practice (Burns and Hoagwood, 2002; Glover and Albers, 2007; Levitt, Saka, et al., 2007). For example, both the President’s Commission on Excellence in Special Education and the No Child Left Behind Act of 2001 (NCLB) (see U.S. Office of Special Education Programs and NCLB, U.S. Department of Education) have strongly endorsed this approach. In its current 2004 reauthorization, up to 15 percent of the funds
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Preventing Mental, Emotional, and Behavioral Disorders Among Young People: Progress and Possibilities available through the Individuals with Disabilities Education Act can be used for early screening, intervention, and prevention to reduce referrals to special education and related services. In a 2002 report on minority and gifted students in special education, the National Research Council recommended that states adopt a universal screening and multitiered intervention strategy in addressing the needs of these school populations, in part to provide services before special education services are needed (see National Research Council, 2002). Finally, the U.S. Public Health Service (2000) recommended that early indicators of mental health problems be identified in existing preschool, child care, education, health, welfare, juvenile justice, and substance abuse treatment systems. School-based screening also has its opponents. Among the objections raised are (1) teachers’ concern that their discretion will be reduced (Elliott, Huai, and Roach, 2007); (2) the extra work involved (Levitt, Saka, et al., 2007); (3) potential stigmatization of students who are identified (Levitt, Saka, et al., 2007); (4) questions about the validity of discrepant rates of disorders related to gender, race/ethnicity, and economic status (Barbarin, 2007); and (5) related parental concerns about labeling and consent. Thus, universal screening procedures, especially those involving multiple stages, must be brief, technically adequate, valid across racial, ethnic, and socioeconomic groups, and produce valued outcomes in order to be acceptable in educational environments. Moreover, they should be accompanied by appropriate safeguards to address and obviate concerns. For example, parents should be contacted in advance whenever such screening initiatives are being planned and provided with transparent and detailed information about their purpose and methods and how results will be used. The wishes of parents who object to their child’s inclusion in such efforts should be respected. The goals and design of these initiatives should be targeted to relatively narrow and specific purposes, for example, (1) improving school success for struggling students, (2) preventing bullying and student harassment, (3) improving teacher and peer relationships, (4) increasing school safety and security, or (5) learning to regulate and control behavior. The ultimate justification for school-based screening is that it can contribute to preventing the development of psychological and behavioral problems, which interfere with school performance. There is evidence that screening can identify young people who are at risk for the development of these problems. For example the Systematic Screening for Behavior Disorders (SSBD) program is a validated, universal screening system to identify school-related externalizing or internalizing behavior problems for students of elementary school age (Walker and Severson, 1990). It consists of three integrated screening stages: teacher nominations of students with internalizing and externalizing problems, teacher ratings of the three highest children on each
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Preventing Mental, Emotional, and Behavioral Disorders Among Young People: Progress and Possibilities list, and direct observation of students whose scores on the teacher ratings exceed normative cutoffs. SSBD has a national normative base of over 4,400 cases representing schools in eight states distributed across the United States. The two behavioral observation codes in Stage 3 were normed on 1,300 cases drawn from these same participating schools. Elliott and Busse (2004) reported that SSBD reliably differentiated students having and not having behavioral disorders. Walker, Seeley, and colleagues (in press) reported a randomized control trial in which SSBD was used to identify the 2 percent of primary grade children who were most aggressive. They identified 200 students (70 percent of whom were Hispanic) in two cohorts and provided an evidence-based intervention involving both parenting skills training and a classroom intervention. The intervention resulted in significant improvements in symptoms, function, and academic domains. Preschool and Day Care. A large proportion of children in the United States regularly attend day care, nursery school, or an alternative out-of-the-home setting prior to age 5. Identification of risk or early indicators of MEB disorders in these settings provides for early detection and the opportunity for preventive interventions. A significant number of children arrive in kindergarten without the self-regulatory skills to function productively in the classroom (Rimm-Kaufman, Pianta, and Cox, 2000) or are expelled from preschool due to behavioral issues (Gilliam, 2005; Gilliam and Shahar, 2006). Although Head Start has adopted standards mandating mental health assessment and intervention for social-emotional problems of enrolled children (Head Start Quality Research Consortium, 2003), it is unclear if they have been fully implemented. Although numerous screening tools are available, there is no single, widely accepted easy-to-use instrument. Barbarin (2007) recently developed a simple tool aimed at identifying children at risk of early onset social-emotional difficulties designed to address barriers to screening in the preschool context. There are promising indications that mental health consultation in preschool settings can improve behavioral outcomes (Perry, Dunne, et al., 2008). McDermott, Mamum, and colleagues (2008) found that screening children ages 2-4 with a standardized questionnaire for irregular eating patterns identified those more likely to have behavioral problems. Children with a chronic illness in the preschool setting are at risk for depressive symptoms and impairment in several social domains (Curtis and Luby, 2008). However, broad implementation of screening for mental, emotional, and behavioral issues linked with prevention programs has not occurred. Reimbursement, the availability of trained staff, and the ability to provide follow-up services impede screening in this setting as well. Federal agencies and knowledgeable professional
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Preventing Mental, Emotional, and Behavioral Disorders Among Young People: Progress and Possibilities organizations should address this opportunity singly but, more importantly, in a partnership mode. Community. Communities and neighborhoods can respond to the emotional and behavioral needs of their youth, aided by information about community-level risks and the prevalence of specific problems and disorders. Mechanisms are available for community self-assessment, for example, Healthy Cities/Healthy Communities, and Communities That Care Programs. Survey and administrative data will be needed to allow communities to move forward on this front, in particular to identify individuals and groups within the community who are most in need of intervention and support. Successful strategies will include partnerships among schools, primary care settings, the mental health professions, community agencies, and local government. Community-based programs, such as home visitation, have incorporated behavioral screening into their interventions (Olds, Memphis Study). The Ages and Stages Questionnaire-SE, which can be used for children ages 6 months to 5 years, has been adopted by several home visiting programs. The Child Behavior Check List and the Infant Toddler Social-Emotional Assessment have also been used for home-based screening by visitors. There should be identifiable risk or protective factors or a latent stage of the disorder to be addressed by prevention. Chapter 4 summarized published work on identification and application of knowledge concerning risk and protective factors for MEB disorders. The literature is now replete with results of randomized controlled studies that support the contention that interventions directed to these factors, whether at the community, family, school, or individual level, result in some level of protection against the emergence of MEB disorders. Many disorders display prodromal symptoms well in advance of diagnosable conditions. There should be validated screening tools or interview techniques to identify risks or early symptoms. Clinical judgment in medical care identifies fewer than 50 percent of children who have serious emotional and behavioral disturbances (Glascoe, 2000). This percentage is likely to be smaller for identification of risk factors or early behavioral problems. Numerous tools and procedures are available that can be used to systematically screen for individual mental, emotional, and behavioral risks or early behavioral symptoms in such settings as primary medical care (see Box 8-1; Perrin and Stancin, 2002; Kemper and Kelleher, 1996), emergency rooms (Grupp-Phelan, Wade, et al., 2007), schools (Barbarin, 2007; Aseltine and DeMartino, 2004; Walker, Severson, and Seeley, 2007), and colleges (McCabe, 2008). Tools are available to screen for a variety of risks, including purging in young adolescent girls (Field, Javaras, et al.,
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Preventing Mental, Emotional, and Behavioral Disorders Among Young People: Progress and Possibilities 2008), trauma (Cohen, Kelleher, and Mannarino, 2008), maternal depression (Grupp-Phelan, Wade, et al., 2007), suicide (Aseltine and DeMartino, 2004), and drug abuse (McCabe, 2008), to name a few. The large number of tools available reflects the spectrum of problems and developmental stages to be screened, as well as perhaps the lack of standardization of approaches in this field. The sensitivity (the ability to accurately identify individuals at risk) and specificity (the ability to accurately identify those not at risk) of available screening tools are important considerations (Meisels and Atkins-Burnett, 2005; Glascoe, 2000). On one hand, a high false-positive rate compounds the problem of stigmatization of potentially healthy children. On the other hand, an excessive false-negative rate will preclude many children in need from being identified and getting the early intervention services needed to keep them healthy. Most of the instruments reviewed have sensitivities and specificities in the 70-90 percent range, which is acceptable for screening. Positive and negative predictive values (the probability of disease among those with a positive test and the probability of no disease among those with a negative test, respectively) are usually not reported in these analyses. The committee did not systematically review the evidence related to all screening tools but was struck by the breadth of available tools. Adaptation of screening tools for specific ethnic/cultural groups may be required. Psychometric properties are not always demonstrated for these groups (Pignone, Gaynes, et al., 2002). Children from culturally or linguistically distinct backgrounds may respond differently than majority youth not only to the screening instrument, but also to the screening process itself (Snowden and Yamada, 2005). In addition, behaviors and emotions that tools identify as dysfunctional may be adaptive in the sociocultural and physical environments of some ethnic minority children and families (Canino and Spurlock, 1994; Dubrow and Garbarino, 1989). Although race and ethnicity are often confounded with socioeconomic status, and socioeconomic status is the stronger predictor of MEB disorders, efforts to increase the cultural relevance, including the linguistic acceptability, of screening tools warrant attention. Screening guidelines should be acceptable to the population and not cause labeling. Historically, the U.S. public has favored the opportunity to gain knowledge of potentially adverse medical situations or outcomes so that action can be taken to avoid the consequences. For example, all states have newborn screening programs in place, many of which test for 20, 30, or even more serious disorders. However, circumstances related to prevention of MEB disorders may frame this point of view differently. Some people do not want to acknowledge or think about mental illness. When screening results have the potential to adversely label or stigmatize young
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Preventing Mental, Emotional, and Behavioral Disorders Among Young People: Progress and Possibilities people, whether healthy or dysfunctional, even if there is a small chance that this may occur, some families are reluctant to allow their children to participate in screening efforts. Males with a genotype resulting in low MAOA activity who are maltreated in childhood have a strong chance (85 percent) of developing antisocial behavior (Caspi, McClay, et al., 2002). Screening early in life with genetic testing would appear to be advantageous in that preventive interventions are available that focus on cultivating strong family systems. However, screening could be stigmatizing for black males, who are frequently stereotyped and more likely to be harshly punished compared with their counterparts (U.S. Public Health Service, 2001a). There has been public and organized opposition to screening programs, such as Teen Screen,1 a national mental health and suicide risk screening program (Lenzer, 2004). This dilemma represents a barrier for screening programs for MEB disorders. Stigma has been recognized as a barrier to screening and mental health services in many settings, including schools. The President’s New Freedom Commission called for a national campaign to reduce the stigma of seeking mental health care and the delivery of universal preventive interventions, especially in schools (Mills, Stephan, et al., 2006). Stigma has been characterized as public, self, and label avoidance. General approaches to changing stigma include protest, education, and exposure (public) as well as fostering group identity, cognitive rehabilitation, and disclosure for self-stigma and label avoidance (Corrigan and Wassel, 2008). Positive Attitudes Toward Learning in Schools (PALS) is one organized effort to reduce stigma that emphasizes families as partners with schools and the use of community consultants (Atkins, Graczyk, et al., 2003; Atkins, Frazier, et al., 2006). Other approaches have embraced the term “mental health” as a positive concept in their communication with the public in an attempt to avoid stigma. Several states have adopted antistigma programs, including advertisements (New Mexico) and a Youth Speakers Bureau (Ohio). The magnitude of the impact of stigma and antistigma efforts on prevention programs for MEB disorders remains to be determined. A survey of adult attitudes of children’s mental health problems found that among adults able to differentiate depression and attention deficit hyperactivity disorder (ADHD) from “daily troubles,” a significant percentage rejected the label of mental illness (13 and 19 percent for depression and ADHD, respectively) (Pescosolido, Jensen, et al., 2008). Existing stigma reduction efforts have not been widely supported, probably contributing to the persistence of this barrier. Routine screening for mental, emotional, and behavioral problems may help alleviate concerns about stigma and labeling. 1 See http://www.teenscreen.org.
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Preventing Mental, Emotional, and Behavioral Disorders Among Young People: Progress and Possibilities Other ethical issues enter into screening considerations. Screening in the absence of available preventive or early treatment services is a formula for frustration and serves to heighten the potential for emotionally isolating the identified child. Accordingly, in the committee’s view, screening is warranted if follow-up intervention is available and accessible that could protect against risk factors becoming predictive factors. If follow-up intervention is not available, the community will have to weigh other potential benefits, such as community awareness and the potential leveraging of resources against the potential issues raised. The committee also concludes that in cases of individual- or group-level screening, all families should be able to make an informed choice about the participation of their child in screening activities, including being provided information on the goals, methods, and intended use of collected information. Ensuring that families are fully informed, however, is an enormous task. Screening as a pathway to better mental health will succeed only if all the attendant ethical issues are managed transparently. The most important element of screening programs going forward may be education of the public concerning the benefits of screening, including avoidance of risks and the importance of early interventions. Public acceptance of screening for risks or early emotional and behavioral problems also becomes a factor in arranging for reimbursement of screening efforts. Costs of newborn screening are borne by the state as the result of legislation. This is not the case for screening related to mental, emotional, and behavioral health. A recent expert forum convened by the Substance Abuse and Mental Health Services Administration (SAMHSA) identified lack of reimbursement incentives for screening and preventive mental health services as one of seven primary mental health barriers (Kautz, Mauch, and Smith, 2008). Economic issues also play a role in decisions about school-based screening because of reimbursement constraints, tight budgets, and reduced staffing in many districts. The future of prevention screening rests in part on public policy decisions. There should be agreed-on guidelines for whom to refer for assessment, prevention services, or treatment. Validated screening tools have cut points or thresholds for concern that would make a child eligible for preventive services or treatment. The first step, following a positive screen, should be the performance of a more detailed psychological assessment to verify the screening results and to determine the nature and the severity of the risk or emotional or behavioral problem. This may take the form of more extensive psychological testing or a psychiatric interview (Perrin and Stancin, 2002). Too often, delay or lack of availability of psychological or psychiatric consultation becomes a barrier for timely assessment and creation of an action plan for the child or adolescent. Lack of training and
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Preventing Mental, Emotional, and Behavioral Disorders Among Young People: Progress and Possibilities failure of the health care reimbursement system to compensate primary care providers for behavioral care has been an impediment to expansion of an engaged workforce. Greater capacity for behavioral evaluation and care is an unaddressed need in the United States. Training and support for individuals and programs that provide behavioral care, whether in the health care, social service, or education system, is a high-priority need. Another barrier is the nature of many of the risk factors, such as poverty, violence, and other neighborhood-related stressors. Modifying these risk factors requires community action, which does not respond in a timely fashion to the needs of individual children. Interventions for population-wide risk factors often fall back on individually focused efforts that identify or build on protective factors, such as parental or other caregiver support in the home. Partnerships with schools can also address risk and protective factors from the individual or group perspective, for example, interventions for exposure to aggressive behaviors (Wilson and Lipsey, 2007). The cost of finding a case should be affordable, cost-effective, and reimbursable. As suggested from the discussion above, screening in the primary health care system can be carried out and reimbursed, as demonstrated by the program for Medicaid children mandated by the courts in the state of Massachusetts. A study of the costs of both developmental and behavioral screening for preschool-age children in a general pediatric practice estimated a per member, per month cost of $4 to $7, depending on the screening objectives and methods (Dobrez, LoSasso, et al., 2001). If effectiveness of screening for, detecting, and preventing cases of MEB disorders can be demonstrated, it is likely that screening in the primary health care setting will be cost-effective. Walker, Severson, and Seeley (2007) report positive outcomes associated with use of a behavioral screening tool paired with family and classroom interventions. No data were found for the cost of screening in school systems. It appears that the biggest economic barrier is not cost, but arriving at societal decisions about who will pay for screening and what the mechanisms for reimbursement of the cost will be. Screening can be population-based or targeted to at-risk groups or individuals. It should be longitudinally implemented, as risks and early signs or markers of evidence-based disorders may develop over time. Contrary to the experience with newborn screening for specific diseases, for which markers are not time-sensitive, risks and early signs or symptoms of MEB disorders may appear or be introduced over time. Therefore, screening for risk factors or the antecedents of these disorders is an ongoing process. The age at which screening should be initiated and the frequency with which it should be repeated have not been subjected to systematic study. These determinations will require judgments based on, among multiple factors,
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Preventing Mental, Emotional, and Behavioral Disorders Among Young People: Progress and Possibilities the environment in which youth are raised, the family structure, and direct observation or reports of the child or adolescent behavior. Furthermore, once an intervention to reduce risk is initiated, screening must continue to assess benefits, and the need for repeated screening imposes a burden, both in terms of workforce and economic demands, on present systems of surveillance. This dimension of screening for MEB disorders deserves additional consideration and analysis. Screening Versus Assessment Research has demonstrated that some groups of young people are at great risk for emotional or behavioral disorders because they have entered a service system, such as criminal justice or child welfare, or because of their particular life circumstances. Children in foster care, children of depressed or alcohol- or drug-dependent parents, incarcerated children, children with chronic health conditions, children exposed to trauma or violence, or runaway youth all are at heightened risk of emotional or behavioral disorders. In the foster care system, given the known elevated risk, all young people are typically screened or accessed for MEB disorders (Child Welfare League of America, 2007; Stahmer, Leslie, et al., 2005). CONCLUSIONS AND RECOMMENDATIONS One of the criteria for assessing the applicability of screening is the availability of facilities to conduct the screening and provide an intervention. The vast majority of young people attend school, see a primary care physician, or both. These settings are likely to be viewed as less stigmatizing than other service environments. Conclusion: Schools and primary care settings offer an important opportunity for screening to detect risks and early symptoms of mental, emotional, and behavioral problems among young people. Multiple screening instruments are available for a variety of ages, settings, and behavioral risks. For many reasons, these instruments are not uniformly used. Schools and primary care settings may also be able to readily identify high-risk groups, such as children in divorced families or children in foster care. Conclusion: A variety of screening instruments and approaches are available, but there is no consensus on the use of these instruments. Although potential screening settings and tools are available, an overarching principle in determining the applicability of screening should be
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Preventing Mental, Emotional, and Behavioral Disorders Among Young People: Progress and Possibilities the availability of an intervention when a risk has been identified. Multiple approaches are available, but few have been tested in conjunction with screening in real-world environments. Recommendation 8-1: Research funders should support a rigorous research agenda to develop and test community-based partnership models involving systems such as education (including preschool), primary care, and behavioral health to screen for risks and early mental, emotional, and behavioral problems and assess implementation of evidence-based preventive responses to identified needs. The effectiveness of screening in primary care and emergency departments could be improved if mental health and substance abuse professional organizations were to work with the various professional organizations, such as the American Academy of Pediatrics, the National Association of Pediatric Nurse Practitioners, and the emergency physicians’ groups, to develop a consensus on the best instruments for screening for specific behavioral health issues. Policy makers, providers, advocates, and researchers could then provide technical assistance to ensure the use of these tools and evaluate their impact on screening children for behavioral health issues (Semansky et al., 2003). Many of these screening tools are designed to elicit information from parents rather than through clinician observation, requiring minimal staff time to administer. Literacy and language competence must be addressed when using this approach. Similarly, screening and preventive interventions are more likely to be acceptable and used in a community if members of the community, including parents, are involved in the design of these approaches (see also Chapter 11). Parental involvement in identification of risk, selection of screening tools, and development of follow-up protocols may help address concerns about stigma and labeling. Similarly, involvement by a range of community providers can help ensure that resources are targeted to identified community needs. There is clear evidence that certain groups of young people face an increased likelihood of negative mental, emotional, and behavioral developmental outcomes. As a result, interventions aimed at assessing and treating these young people have been put in place. Opportunities also exist to provide preventive interventions for groups at known risk. Conclusion: Some groups of young people, such as children in foster care, children in juvenile detention facilities, and children of depressed parents, are known to have a greatly elevated risk for MEB disorders. Targeted screening or in some cases full assessment of individuals in
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Preventing Mental, Emotional, and Behavioral Disorders Among Young People: Progress and Possibilities these groups to identify potential preventive services or treatment needs are warranted. Identifying and addressing groups or communities with elevated risk can serve a preventive function complementary to identification of individuals at risk. This screening level uses public health principles and may be particularly cost effective. Conclusion: Screening for community- and group-level risk factors as well as individual-level screening for symptoms is an important public health function. Community-level screening in the United States has largely been limited to communities assessing their own strengths and needs (e.g. Communities That Care; see Box 11-1) rather than using known risk factors to identify specific communities with elevated needs. For example, although there is substantial documentation that factors such as poverty place young people in communities with these characteristics at greater risk for negative emotional and behavioral outcomes, few programs have targeted resources to these communities to address community-level risks. Recommendation 8-2: The U.S. Departments of Health and Human Services, Education, and Justice should develop strategies to identify communities with significant community-level risk factors and target resources to these communities. Although this would be a novel approach in the United States, there are models available from the United Kingdom that could guide these efforts. Since 2000, the United Kingdom has a system for identifying areas with high need for intervention using the Indices of Multiple Deprivation. The index is based on the idea that certain areas can be characterized as deprived on the basis of the proportion of people in the area experiencing various manifestations of deprivation. The indices include seven domains: income deprivation; employment deprivation; health deprivation and disability; education, skills, and training deprivation; barriers to housing and services; living environment deprivation; and crime. These are measured using 38 indicators based on census and other publicly available data (Noble, McLennan, and Whitworth, 2009). Areas identified with high levels of deprivation are targeted for additional local and national-level resources. In addition to permitting precise focus on areas with high multiple deprivations, this approach provides the ability to track change using the same criteria. The committee was not aware of any outcomes data on this approach, however.
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