Overlooked and Underserved: “Action Signs” for Identifying Children With Unmet Mental Health Needs

Despite the presence of well-established diagnostic criteria for children's mental disorders for >20 years,1–3 parents and teachers often fail to recognize the presence of possible mental health problems in children. Estimates by the US Surgeon General4 have revealed that most children with mental disorders do not receive treatment,5,6 even with well-recognized conditions such as attention-deficit/hyperactivity disorder (ADHD). Recognition of children's mental health needs depends on the awareness and actions of key adults.5,6 However, failure to recognize children's mental health needs is not only a problem among laypersons but also among education, welfare, juvenile justice, and health care professionals.7,8 Underidentification is of particular concern in schools9–13 and primary care,4,14–20 where virtually all children are seen and where identification should be feasible. However, only 1 in 4 children with a mental disorder is identified by the primary care doctor.21 In fact, the best predictor of a primary care clinician (PCC) identifying a child's mental health problem is whether parents draw the PCC's attention to the issues rather than any PCC-initiated procedure.22 Evidence suggests that PCCs are more comfortable in identifying and managing attention disorders, whereas identification, treatment, and referral for other disorders lag.23 Communication is complicated by difficulties distinguishing symptomatic from normal behaviors. Symptom lists are often used to help parents and others identify children with mental health needs, but such lists might not be of assistance if the parent, teacher, or physician reasons (correctly) that “every child has some of these symptoms some of the time.” In addition, the time and administrative burdens needed to screen for mental health problems within primary care practices seem to be major deterrents to their use.23–25 Attempts to remedy this situation have involved computer-assisted25 and symptom-specific22 screening procedures, but these methods also involve time or expense and might be biased toward a single area of functioning (eg, depression screeners). Better ways to communicate about children's mental health needs must be developed, in terms easily understood by persons of different backgrounds, cultures, and education levels. Ideally, these simpler communication methods should apply the “lessons learned” from studies of decision-making and our understanding of the limitations of human capacities to make complex judgments under uncertainty (eg, to refer or not refer a child for evaluation).26,27 For example, many cognitive operations are required for parents to (1) determine which, if any, symptoms their child might have from a long list, (2) evaluate the significance of any symptoms in terms of what the parents know about the child, (3) ponder whether the problems are severe enough to bring them to their doctor's attention, and (4) actually schedule a visit. By way of contrast, the cognitive present/not-present determinations of a single well-described criterion, such as a single symptom profile or “warning sign,” greatly simplify the cognitive operations, might reduce uncertainty in decision-making, and facilitate parents and others to obtain a health care evaluation when a child is in distress. The idea of creating warning signs for health problems is not new. In 1971, President Nixon declared a “war on cancer” with enactment of the National Cancer Act.28 Seven warning signs were developed as a communication tool for early intervention.26,27 These warning signs were designed to be easily understood so that those with a potential cancer warning sign would realize that a checkup is required. Any single warning sign was meant to trigger an action (ie, seeing one's doctor for an evaluation). Invoking the need to develop a similar strategy for child mental health, the US Surgeon General29–31 called for researchers to find more effective means for public communications about the types of children's behaviors that warrant professional attention. This need was further underscored by the President's New Freedom Commission on Mental Health.32–35 To meet the Surgeon General's challenge, federal officials determined that brief, common-sense descriptions of child mental health problems might be useful if they (1) validly characterize children with mental health problems, (2) are cast in language readily understood by the public, and (3) are accepted by the public as credible indicators of a child's need for a health evaluation. The value of such descriptions would then be for their use as communication/education tools and public messages (ie, as “warning” or “action” signs) to educate and mobilize the public to identify and refer appropriate children for health care evaluations. Thus, officials from the National Institute of Mental Health and the Center for Mental Health Services supported a contract to empirically determine if certain behavior/symptom profiles might be developed as action signs for public communication and educational objectives. Under federal guidance, we established a steering committee (SC) (that consisted of child mental health epidemiologists, parent/advocacy representatives, and policy experts [see author list]), the goal of which was to develop these warning signs. The SC met regularly (by telephone and in person) to define the goals and methods of the project. The following project objectives were set. To identify brief, easily understood symptom profiles of children with significant behavioral health problems from extant epidemiologic data sets. Because of well-known variations in mental disorder prevalence based on the level of impairment required to meet diagnostic criteria, and given the SC's wish to avoid identifying children without significant problems as having a warning sign (ie, false-positives), the SC focused on symptom profiles for severely ill children for whom a medical evaluation would be deemed medically necessary and noncontroversial, even to those who are skeptical. To determine if these descriptors characterize children with common yet severe behavioral problems and who are not receiving any health care for these problems (eg, unmet need). This second objective was critical, because if the descriptors only identified children who were already receiving health care services, they would not serve the purpose of identifying children with severe yet unrecognized problems. SC members set the goal that the action signs should identify ∼5% to 7% of the community population,35 erring on the side of low sensitivity and high specificity. To ensure that the descriptors map onto recognized, impairing psychiatric diagnoses with positive predictive values of ≥50%. To translate the profiles into common-sense language that can be readily understood by the public and ultimate users. To work with major national professional and advocacy organizations to officially endorse/adopt the warning signs for further dissemination. Here we present the methods and findings from these 5 goals of our warning-sign development. Please note that, from this point forward, we refer to the warning signs as “action signs” on the basis of recommendations of the SC and multiple focus groups, which indicated that the latter term would be more useful and less likely to be stigmatizing.