According to these analyses, the overall prevalence of mental health disorders among children and adolescents is ~15%, whether by parent or youth report (note that not all diagnoses were included in these samples [eg, oppositional defiant disorder, Tourette syndrome, autism, etc], so rates including these conditions would likely be higher, perhaps at the generally acknowledged levels of 20%).28
In contrast, the prevalence of more severe indicators ranged from 6.7% for parent reports to 9.9% for youth reports, which yields rates that more closely approximate the efforts by the Center for Mental Health Services to identify the prevalence of “severe emotional disorder.” However, the high levels of children with significant behavioral or mental health problems who were not receiving any services in the previous 6 months are alarming, particularly because the action signs were intended to identify those with an undisputed (face-valid) medical necessity for evaluation and possible services.
These statistics reveal a sobering problem: among children with severe types of problems of greatest concern to all focus groups, most are not being seen by any type of provider, neither health care nor educational. These findings, sadly, are not new. Even for the ADHD indicator, a presumably overdiagnosed disorder, of the 1% of children who had hyperactivity so severe that it put them at physical risk or resulted in school failure, only one-third had received an assessment or had been in care in the previous 6 months. Most dramatically, for action signs related to purported abnormal behaviors such as aggression, children are almost never in services, as shown by our data. Thus, among children who are viewed by stakeholders as having severe types of behavioral health problems, lack of services was extremely high, which is an important new but uniform finding across all 4 of the methodologically rigorous data sets.
The credibility and face validity of the proposed action signs was apparent in the analyses of action signs according to diagnosis (). On the whole, the action signs mapped onto specific DSM diagnoses 52% to 75% (positive predictive value) of the time and onto the reality that the overwhelming majority of these children do not receive any health care services for their problems. The replication of analyses with the Great Smoky Mountains Study revealed the validity of our findings independent of the DISC instrument.
By way of caution, it should be noted that, by design, the action signs have low sensitivity to most diagnoses, which is easily seen when one views and the prevalence rates for any disorder (15.2% and 15.2%, parent and child report, respectively) and compares them to the lower rates for any action sign in (6.7% and 9.9%, parent and child report, respectively). Thus, the sensitivities of the any-action-sign metric against the any-disorder variable is low (0.31 and 0.34, parent and child, respectively), whereas the specificities are high (0.98 and 0.95, respectively). As a consequence, if one were to use the action signs as some type of screener, two-thirds of the children with DSM disorders would be missed. On the other hand, the action signs might be useful for educational and broad public service messaging, because they were deliberately designed to avoid risk for harm by overidentifying children or alarming parents. It is important to note that despite their low sensitivities, 70% to 80% of the children the action signs do identify have not received relevant services in the previous 6 months, which indicates that the action signs do seem to effectively identify severely ill children, most of whom have unmet need.
Overall, the action signs identified approximately equal numbers of boys and girls, although specific action-sign rates varied according to gender (eg, substantially greater rates for the anxiety-problem action signs in 7- to 11-year-old girls than boys or the twofold-greater rates of extreme hyperactivity in 12- to 17-year-old boys than girls). It should be noted that the prevalence of action signs seemed to increase with age (from 6% to 8% in the younger age groups to 8% to 12% in older children and adolescents). The difference might reflect a real variation in rates of severe, action-sign–type problems in children versus adolescents, or it might signify a need to identify profiles that better identify younger children. Unfortunately, among children younger than 7 years, we are unaware of any representative data in the United States that could be used to develop and test action signs in this age group, so we could not address this potential problem in this report.
This project has broad clinical, service, and policy applications. Scientifically valid, easily understood, and readily accessible action signs might facilitate children's pathways to referral and receipt of needed services and warrant further study and application if we are to close the mental health services gap for children with severe emotional and behavioral difficulties.53,54
Although new, effective treatments are increasingly available, such treatments will not reach children in need without informed parents and well-educated primary care providers, teachers, and others who are armed with efficient and easily applied means of identifying which children need these services.
Although the action signs might serve as effective educational and communication tools for facilitating awareness among parents, teachers, youth, and health care professionals about children's mental health needs, additional studies are needed to ensure that parents and teachers understand them; to determine if they “take action” in appropriate fashion when a child manifests an action sign; and that children and families are bridged effectively over the mental health services gap. Additional studies should also conduct independent evaluations of impairment associated with the various action signs to firmly establish whether they do, in fact, identify more severely impaired children.
We noted that children and adolescents might have other problems and/or significant impairment in functioning not adequately defined by these action signs. For example, should “cutting” be included in some future action signs? Likewise, epidemiologic data sets in which symptoms in very young children were assessed were not available for our analysis, which resulted in significant gaps in our understanding about appropriate action signs in this younger age group. In addition, the full spectrum of diagnoses (autism, Tourette syndrome, enuresis/encopresis, milder cases of ADHD, oppositional defiant disorder, etc) were not included or captured by the current action signs, in part because the DISC does not address conditions such as autism and in part because the SC chose to focus on common and severely impairing conditions.
Finally, we noted that a number of important variables (such as ethnicity, family income) were not available from all 4 data sets, so we could not determine if these variables were related to different levels of action signs. Further analyses of other data sets with a broader array of potential moderating variables could yield additional information about how such factors might affect the distribution of action signs across different population groups. Available evidence suggests that these variables can exert significant effects, particularly in relation to access to and utilization of care and, by extension, unmet needs for services.54,55
Despite these caveats, the action signs reported here do seem to characterize children across major gender and age groups who have relatively common yet credible behavioral health problems that, more often than not, are not being addressed. Applying action signs to a variety of settings could have a significant impact on early identification and access to services for many underidentified children. However, more research is needed to ensure the ultimate usefulness and broad-scale applicability of the action signs and to determine if they can serve as effective tools for educating the public to better recognize and respond to children's needs for behavioral health services. If appropriately coupled with other efforts to actually improve our diagnostic and treatment services for these children via guidelines and toolkits, substantial progress in children's behavior health outcomes might soon be possible.