The challenges of effectively monitoring influences on mental, emotional, and behavioral (MEB) health and development, outcomes for children and youth, and related information are significant. This Appendix supplements the recommendations offered in Chapter 11 with exploration of three areas in which monitoring can be strengthened: effective measurement of key indicators, surveillance and screening, and use of big data.
EFFECTIVE MEASUREMENT OF KEY INDICATORS
The measurement of indicators useful for effectively monitoring MEB health and development among children and youth poses several challenges. One is that not all of the tools used to measure indicators for adults work well with populations of children and adolescents. Development is most fluid during childhood and adolescence, so variables may change swiftly. Children are more sensitive than adults to environmental and social influences because of rapid changes in their physiology and neurodevelopment. Assessments and reporting are often done by a parent or other proxy rather than through self-report, as is done with many adult outcome metrics. Because most children are relatively healthy, many measures have a “ceiling effect” if they do not take into account long-term developmental resilience and vulnerability. And children suffer from different morbidities than adults, which may be reflected in their developmental status.
Another challenge is that the purpose of indicators of healthy development varies by the level at which they are used. Individual measures of development are useful for assessing the trajectory of a specific child’s development in ongoing surveillance, such as in primary care practice or school, and should be linked with specific promotion, prevention, or treatment services for children and their families. Community-level measures, such as child development surveys at the school or health system level, are most useful for improvement efforts in neighborhoods or by educational, social, and health services.
A related issue is that there are no well-defined indicators that are universally shared for many important factors and outcomes of interest. Even
when the indicators and their purposes are well defined, the collection of data on these indicators may not be feasible in some scenarios. For example, a lack of personnel, time, or funding may prevent a school from having the ability to collect and report on indicators of students’ healthy development accurately and adequately.
SURVEILLANCE AND SCREENING
Surveillance (purposeful observation by a skilled professional) and screening (formal data gathering using a standardized tool) are important methods for identifying problems and opportunities in individuals and populations. Both can be carried out in universal, selective, and indicated modes. Targeting venues that serve all children, such as schools and health care, will create efficiencies for broad application of surveillance and screening.
The 2009 National Research Council and Institute of Medicine report (National Research Council and Institute of Medicine, 2009) includes a chapter on screening for prevention, which is organized around adaptations of World Health Organization guidelines for screening in health care to identify risks to healthy MEB development or for detection of prodromal, concerning behaviors. In the intervening decade, greater attention has been paid to screening and surveillance. Prominent screening programs to date have targeted early identification of MEB health conditions, such as autism spectrum disorder in preschool-age children (Zwaigenbaum et al., 2015) and depression in adolescents (Siu and U.S. Preventive Services Task Force, 2016). Screening for risks of behavioral disorders—for example, screening parents and youth for recollection of adverse childhood experiences—has also received increasing attention in the past decade (Briggs et al., 2014; Finkelhor et al., 2013), as has surveillance for adverse experiences of young children (Bethell, Simpson, and Solloway, 2017).
Venues for these surveillance and screening activities include health care settings but also child care settings, preschools, and schools (Dowdy, Ritchey, and Kamphaus, 2010). For example, as discussed in Chapter 11, population-based screening of 5-year-olds in schools in British Columbia has provided feedback to schools and communities about the status of physical, social, and behavioral dimensions of development in their local environment (Guhn et al., 2016). Screening at the community level has been embedded in home visitation. For example, home visitors screen for postpartum depression, providing an opportunity for early treatment of mothers with the rationale that parenting capabilities will be enhanced (Ammerman et al., 2010). See Box B-1 for several examples of existing screening programs.
Since 2009, there has also been a focus on surveillance to identify the need for interventions to mitigate adverse consequences of social determinants in health care (Garg and Dworkin, 2016). Teachers may conduct surveillance for symptoms of attention deficit-hyperactivity disorder and other behavioral disorders, as well as social determinants of a child’s well-being. The American Academy of Pediatrics Bright Futures guidelines (Hagan, Shaw, and Duncan, 2017) recommend (in their fourth iteration) surveillance questions during well-child visits for such family risk factors as food insecurity, living situation, child care, excessive screen time, interpersonal violence, and household tobacco/alcohol/substance use, as well as such protective factors as reading to the infant or child, school success, providing opportunity for physical activity, and healthy nutrition. This level of surveillance is recommended as a universal component of practice, as impediments to healthy MEB development occur at all family socioeconomic levels. Evidence suggests that screening for social determinants of health in pediatric practice can result in allocation of greater community resources for families with need, compared with usual care (Garg et
Guidelines for Selecting and Implementing Screening Programs
The setting or context for screening should include capabilities for providing feedback to parents or the child (when old enough). Ideally, feedback would occur in real time, at the point of encounter. The setting should also provide or be linked to resources for following up on screening results that are concerning, with more detailed assessment and intervention as indicated. For many families, referral to another point of service may be overwhelming. For this reason, programs that can identify needs through screening and respond to those needs in a comprehensive fashion within the same setting are in a more advantageous position to gain family acceptance and compliance with intervention plans (Jaycox et al., 2009).
Screening should use validated tools and acceptable processes for the population undergoing needs assessment. The tool should be developmentally and educationally appropriate. For example, picture response options can be helpful for younger children. Brief, rather than lengthy, surveys are usually preferable, particularly for screens that are administered repetitively over time. Paper surveys have been popular in the past, but online screening at kiosks has proven to be efficient and accepted by most families, and has the advantage of collecting data and providing feedback to the family within the context of a single visit. Online screening also allows for easy reporting of group or population data and can be used for purposes of health services improvement or research (with deidentified data). The environment for entering information should be private and free from distraction to the extent possible. Universal screening has the advantage of avoiding or lessening stigmatization of individuals or families.
Well-trained screening personnel should support this function. Individuals who can professionally explain the rationale for screening, the process for completion of screening, and follow-up steps can enhance consistent participation by parents and/or children and the quality of screening input. Longitudinal screening has advantages over one-time screens in terms of assessing consistency of responses, as well as being able to track trajectories.
Guidelines for determining who is to be screened, how often screening should occur, who interacts with parents and/or children concerning the screening process, and how the results of screening will be managed should be in place and understood by all personnel involved. Quality improvement of screening programs in health care has augmented outcomes remarkably (Beers et al., 2017).
Screening in School Settings
Screening to identify students who have MEB health needs has long been carried out in school settings (Dowdy, Ritchey, and Kamphaus, 2010). In the context of a school’s multitiered system of support, universal and indicated screening can be used to detect the mental health needs of individual students or
even of the student body for both prevention and treatment (Walker, 2010). Instruments such as the Behavior Assessment System for Children-2 Behavioral and Emotional Screening System (Kamphaus and Reynolds, 2007) can be used in schools to assess for risk of emotional and behavioral problems. School surveys that focus on positive youth development, such as the California Healthy Kids Survey-Social and Emotional Health Survey, are also available (You et al., 2014). Another emerging area for monitoring in schools is assessment of the organizational school climate, which has been shown to be associated with students’ self-esteem, mental health, bullying, and such outcomes as absenteeism and suspensions (Bear et al., 2011; Thapa, 2013). The rapidly increasing prevalence of anxiety problems treated in college counseling services (Center for Collegiate Mental Health, 2017) has prompted offerings of screening for this disorder, which might be considered in middle and high school settings.
Screening in Health Care Settings
A report from the American Academy of Pediatrics addresses the growing need to screen for behavioral and emotional problems or health in child primary care settings, as well as for changes in health care practice and systems to respond to this need (Weitzman and Wegner, 2015). The benefits of screening programs may extend beyond those originally targeted. For example, screening for maternal depression has been characterized as an opening to address the social determinants of a child’s health (Schor, 2018). The recognition of anxiety and depression in a large proportion of parents of children with disabling and life-threatening chronic health disorders has led to recommendations for parent screening (Quittner et al., 2016). For example, the Cystic Fibrosis Foundation recommends that CF Care Center personnel annually offer the Generalized Anxiety Disorder 7-Item scale and Patient Health Questionnaire-9 screening tools to parents and encourages the use of the Psychosocial Assessment Tool (Kazak et al., 2015) to identify family psychosocial risks. A related effort has been the experimental screening of children with chronic diseases and their families for school attendance and academic barriers, with the goal of improving school success for these children as an important resilience factor (Filigno et al., 2017). Screening of children for behavioral health problems and risks in the emergency room has been successful and may be important when families are disconnected from primary care systems (Williams, Ho, and Grupp-Phelan, 2011).
Screening Concerns and Barriers
Family concerns about screening programs include labeling and potential stigmatization of children, which has been of particular concern in communities already burdened by racial, social, and economic disadvantage. Universal screening might mitigate some of this concern. Another concern is the inability of programs and systems to respond effectively to needs identified by screening.
Perhaps the greatest concern at this time is the ability to support and sustain screening programs financially. In health care, screening is generally not a reimbursable service, by either private or public payers. The Centers for Medicare & Medicaid Services has approved payments for maternal depression screening in well-child care, but payment is dependent on state decisions to provide these payments. Most states currently do not reimburse this activity. Some child health care screening may be included in Early and Periodic Screening, Diagnosis, and Treatment service payments, but most activity in this program targets assessment of physical development. The Patient Protection and Affordable Care Act included a stipulation that payment for child health care recommendations be included in the Bright Futures guidelines, but implementation of payments never materialized. Recommendations of the United States Preventive Services Task Force (USPSTF) are a basis for reimbursement, but recommendations are limited to health care settings, and have not addressed most efforts to foster healthy MEB development or prevent adverse influences on MEB development. The USPSTF has issued statements that the evidence regarding efforts to screen for and/or prevent alcohol misuse, autism, child maltreatment, adolescent depression, illicit drug use, speech and language delays, and suicide risk is inconclusive. Only education to prevent initiation of tobacco use in children and adolescents and screening for adolescent depression are recommended. For these reasons, creating a strong evidence base for MEB health promotion and risk prevention interventions in children is urgent.
Although schools have been viewed as ideal venues for screening and MEB risk interventions, public school systems are evaluated based on students’ academic performance and other factors, and not on their students’ MEB outcomes. Screening or surveillance for MEB risks and early behavioral disorders are not widespread in schools, but examples include the Tulane Early Childhood Collaborative and the Early Learning Development Instrument, in which measurement leads to mobilization of resources and engagement with diverse stakeholders in child development.
Many states now conduct annual assessments of adolescents’ behaviors, including both problem and, to a lesser extent, prosocial behaviors. The Youth Risk Behavior Surveillance monitors some MEB-related adolescent behaviors. One example of county-level surveillance of social determinants of health is the Los Angeles Department of Public Health’s Community Health Assessment survey, a population-based random telephone survey of children and adults in the county’s households, including institutionalized and homeless individuals with cell phone access, which is provided in multiple languages. Surveillance at the county level includes characterizations of children (school readiness, television viewing, access to mental health services, teen and parent substance use, physical health), parenting (parent support, child care, breastfeeding), households (employment, food insecurity), and neighborhoods (sense of belonging, crime, access to parks, concerns about climate change, air quality). (See Los Angeles County Department of Public Health, 2017, for more information.)
Nevertheless, there is not currently consistent measurement of child and adolescent development across the United States. In areas in which youth are routinely assessed, such as the Monitoring the Future survey or Youth Risk Behavior Survey, the data provide a valuable tool for policy makers and investigators.
Most research in social and behavioral sciences has involved the generation of data to answer particular questions, but data that have been generated for other purposes may contain elements that are applicable and can be repurposed to answer questions in the social and behavioral realms. Increasingly, large volumes of data collected by electronic systems, often referred to as “big data,” are available for research purposes and such data may play a crucial role in the development of a national monitoring system for children’s MEB health.
Data sources that may be useful in efforts to address social and behavioral issues include those that are local (e.g., social services, school system, health care system), statewide, or national. Data sources might include administrative data, aggregated individual child or family data, census data, tax records, juvenile justice records, and national surveys. Data from social media and other Internet activity, if collected with sufficient privacy protections, may also be informative. Another example is electronic medical record data related to social determinants of health, for example, in narrative social worker notes, which could be mined using natural language processing to identify risks and other patterns (Pestian et al., 2016, 2017). Analyzing large data sources may be particularly useful for generating hypotheses. Scientists from disciplines including social and behavioral science fields can collaborate to define project objectives, and consider varied perspectives on ways to harvest useful information from new data sources (Mathematica, 2018).
Communities concerned with healthy development lack readily available tools for measuring salient attributes, and also lack resources or systems for collecting, analyzing, and reporting data on child development. Investments in shared infrastructure for data management will be essential. Hospitals, schools, and social service organizations such as United Way may be most skilled in data collection and management.
Continued investment in measurement science for children is critical. Assessment tools developed in laboratories play an important role but support will be needed as well for emerging frontiers and challenges, including digital monitoring of children and their development; the development of algorithms for processing large amounts of monitoring data and other tools for detecting patterns, connections, and other pertinent information; the integration of records across service sectors that care for children; and the continued development of safeguards to ensure confidentiality and privacy in coordinated records. As system processing improves, some measures and monitoring devices may be useful for both individual tracking of the developmental status of children over time and,
when aggregated, community- and societal-level tracking. Recognition of the importance of developmental indicators for children and youth is growing; examples including the Vital Signs project of the National Academy of Medicine and the 500 Cities project of the Centers for Disease Control and Prevention and the Robert Wood Johnson Foundation illustrate the valuable role they can play.
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