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Section 4: Key Elements of the National Statistical Picture

Chapter 19. Estimates of Mental and Emotional Problems, Functional Impairments, and Associated Disability Outcomes for the U.S. Child Population in Households

Lisa J. Colpe, Ph.D., MPH

National Center for Health Statistics

Introduction

Estimating the prevalence of psychiatric disorders in youth has been a topic of intense interest in developmental epidemiology for several decades. Historically, difficulties in measurement have revolved around changing criteria that have accompanied the evolution of the Diagnostic and Statistical Manual from DSM–II, to DSM–III, DSM–III–R, and now DSM–IV (with DSM–V on the horizon). More recently, measurement issues have been affected by Public Law 102-321, the Alcohol, Drug Abuse and Mental Health Administration Reorganization Act (1992), of which Title II establishes a block grant for community mental health services for children with severe emotional disturbance (SED). This law required the Center for Mental Health Services (CMHS) to establish the definitions for the term SED. The resulting definition of SED requires children to have a psychiatric diagnosis (excluding V codes, substance abuse, and developmental disorders occurring in the absence of another diagnosable disorder) and substantial impairment in family, school, or community activities. Adding an impairment indicator was meant to distinguish between children with psychiatric disorders that significantly affected their ability to function in their environment and those having only mild impairments. According to these criteria, youth can be divided into four categories: (1) Children without diagnosis or functional impairment, (2) children with functional impairment but no diagnosis, (3) children with diagnosis but no functional impairment, and (4) children with diagnosis and functional impairment. These categories form a structure for analyzing population-based health survey information.

This chapter presents data from the National Health Interview Survey on Disability (NHIS-D; conducted in 1994–96) that describes the U.S. population of children with reported mental, emotional, and behavioral problems and functional limitations as well as associated consequences found in limitaion of school activities, school days missed, reported health status, and service utilization. Children were first divided into two major groups: a Disability Group containing youth identified as having reported mental/emotional problems and functional limitations; and a Reference Group composed of youth who were not identified as having problems/limitations. Then, using the structure set by SED criteria, the Disability Group was subclassified into three mutually exclusive categories of functional limitation only (FL Only); mental, emotional, or behavioral problem only (M/E Only); and mental, emotional, behavioral problem and functional limitation (M/E + FL). First, total prevalence of children in the Disability Group is reported, followed by a graphical representation of FL Only, M/E Only, and M/E+ FL distributions within the Disability Group. Second, the Disability Group is compared to the Reference Group by examining population distributions among sociodemographic characteristics. Third, demographic characteristics of children within each of the Disability Group subclassifications are presented. Fourth, the Disability Group is compared to the Reference Group according to disability outcomes of school activity limitation, number of school days missed, and health status. Finally, service utilization of the Disability Group is presented.

Data and Methods

Data Source: The NHIS is an annual household survey that collects detailed health information from the civilian, noninstitutionalized population of the United States. It is conducted by National Center for Health Statistics, Centers for Disease Control and Prevention. The NHIS-D is a survey that was designed specifically to collect data that could be used to understand disability and to provide baseline statistics regarding the prevalence and effects of disabling conditions. In order to accomplish its goal of collecting comprehensive information, the NHIS-D was designed to be administered over 2 years, with each year consisting of two phases of data collection. Phase I gathered information about all members of the sample households. This questionnaire collected basic data on disability that was then used as a screening device to determine eligibility for the Phase II questionnaire, which collected finer details about disability with regard to function, family impact, and use of services. Phase I data were collected in 1994 and 1995; Phase II data were collected 1 year after each Phase I survey (National Center for Health Statistics, 1997, 1998). Thus, the data collection period for the NHIS-D spanned from 1994 to 1996. Combined, Phase I data were collected on 205,560 persons; 41, 100 of the sample were school-age children. Respondents: Information about children was gathered by using responders who were adults who were most familiar with the health of the child. A total of 91 percent of the respondents were parents. This study is limited to children between the (school) ages of 5 and 17. Children reported to have mental retardation or Down's Syndrome were not included in this analysis.

Definitions Mental/Emotional Problem

The presence of mental/ emotional problems was operationalized using two questions from the Phase I portion of the NHIS-D: "Does your child have a problem or delay in mental/cognitive development?" and "Does your child have a problem/delay in emotional/behavioral development?" Children with a yes response to one or both of these questions were placed in the Disability Group.

Functional Limitation
Functional limitation was defined using four variables from Phase I.

"Does your child have significant problems at school with paying attention in class?"

"Does your child have significant problems at school with controlling behavior?"

"Does your child have significant problems at school with communicating with others?"

and

"Because of a physical, mental, or emotional problem, does your child now have any difficulty playing or getting along with others his/her age?"

Children who have difficulty getting along with others because of a physical problem were controlled for by including only those who had also been identified as having a mental/emotional problem.

Children with a yes response to one or more of these questions were placed in the Disability Group.

Disability Outcomes

Disability Outcomes are defined by limitations in school activities, number of school days missed in the past 2 weeks, and a global rating of health status. The Limitation in School activities variable has four response categories ranging from No Limits to Unable to Attend/Limited Attendance in School. Number of School Days missed in the past 2 weeks has a range of 0–10, which was divided into categories of 0 days missed, 1 day missed, and 2 or more days missed. Health Status is measured along a five-level scale that ranges from Excellent to Poor health.

Service Utilization

Information about service usage was collected in Phase I and Phase II. Twelve types of services are grouped into four categories. The first category, "Now Sees a Mental Health Provider," is measured using a single item asked of all children in Phase I, "Does your child now go to a counselor, psychiatrist, psychologist, or social worker on a regular basis?" The remaining 11 types of services come from questions in Phase II and are asked only of children in the Disability Group. The reference period for receiving these services is 1 year (i.e., Did your child receive _____ services in the past 12 months?). Three categories were created: Therapeutic Services (physical therapy, occupational therapy, speech therapy, and recreational therapy); Home-Based Medical Services (visiting nurse, personal care assistant, interpreter, physician home visit, and transportation services); and Social Services (social work services and independent living assistance).

Demographic Variables

Demographic characteristics of sex, age, race/ethnicity, family structure, poverty status, and Metropolitan Statistical Area (MSA) were examined. The identified 5-to 17-year-old age range was divided into 2-year age groups except for the 17-year-old category, which represents 1 year. Two variables provided information for Race/Ethnicity classifications. First, a Hispanic ethnicity variable was used to identify Hispanic children, and then a race variable was used to classify all non-Hispanic children into white, non-Hispanic; black, non-Hispanic; and other, non-Hispanic categories. Thus, persons who reported Hispanic ethnicity and white race were classified as Hispanic, while those who reported they were not of Hispanic ethnicity but were white race were classified as white, non-Hispanic, and so on. Family structure covers four categories: two-parent families, mother-only families, families that have a mother and another adult living in the home, and 'other' category, which encompasses the rest of the possible configurations such as father-only families, families with grandparents acting as parents, and foster families. The Poverty Status variable was calculated using family income and family size information along with the appropriate poverty levels derived from the 1994 and 1995 U.S. Census Bureau Current Population Survey. For this analysis, four poverty indicator categories were generated: (1) below 100 percent poverty (representing the very poor); (2) 100 percent– 199 percent poverty (representing the near poor); (3) 200 percent+ poverty level (representing the not poor); and (4) Unknown (representing the percentage of the population that did not supply any income information). MSA is a variable created by the NHIS to describe the type of areas respondents live in. It is divided into three categories: MSA-Central City, MSA not Central City (i.e., suburbs), and Not MSA (i.e., rural or small-town areas).

Results Prevalence and Distribution of the Disability Group

Figure 1 shows that 8.2 percent or 4.1 million children in the civilian, noninstitutionalized population of the United States have a reported mental/emotional problem and/or functional limitation (the Disability Group). Figure 2 illustrates that within this Disability Group, 54.3 percent (2.2 million) have FL Only, 12.9 percent (529,000) have M/E Only, and 32.8 percent (1.3 million) report M/E + FL.

Demographic Characteristics of the Disability Group and the Reference Group

Table 1a shows the demographic characteristics of children in the Disability Group and the Reference Group. In this table, estimated numbers of children in each demographic category are listed first, followed by the population distributions and standard errors within each level of the demographic categories. This allows for comparison of the Disability Group to a standard nondisabled population.

In general, a greater proportion of boys are found in the Disability Group, and an age curve that peaks at 9 to 10 years old is evident. There is a higher proportion of black, non-Hispanic children in the Disability Group as well as children from families that do not contain two parents, with a particularly high proportion coming from single-parent (mother) families. Children in the Disability Group are disproportionately represented in the "less than 100 percent poverty" level, with a less, but still no-table, difference in the 100–199 percent poverty range. Among the MSA categories, a greater proportion of the Disability Group is found in the Central City category.

Demographic Variations Within the Disability Group

Table 1b displays the Disability Group broken into the subclassifications FL Only, M/E Only, and M/ E + FL. Again, estimates of the number of children falling into each demographic category are listed in the first column with population distributions listed in the second column. The focus of this table is the within-group variation among the three sub-classifications. Since this table presents only data on the Disability Group (8.3 percent of the total 5-to 17-year-old population), the numbers within each cell are much smaller, especially in the M/E Only subclassification. Cells that do not meet standards for precision are noted. The data show that boys are concentrated in FL Only and M/E + FL. Among the age categories, the proportions peak at 9–10 years old in the FL Only and M/E Only subgroups; however, proportions in M/E + FL are highest at 11 and 12 years. Within the Race/Ethnicity variable, a greater proportion of white, non-Hispanic children are in M/E+ FL while a slightly higher proportion of black, non-Hispanic children are in FL Only. Other notable within-group variations are found in the Mother Only Family Structure category, where children are more heavily distributed in the M/E and the M/E+ FL groups. Among households living in poverty, a greater proportion of children are found in the M/E Only group; children from near-poverty households are more heavily distributed in the M/E+ FL; and children who are not living in poverty are more likely to be found in FL Only. Finally, among children living in Central City areas, a higher proportion is found in M/E+ FL.

Disability Outcomes

Table 2 presents data that allow comparisons of the Disability Group to the Reference Group on Disability Outcomes. Within the Disability Group 40 percent of the population is distributed among the three types of limitation categories, with the highest concentration in the "Attends or needs special school/classes" category. Comparatively, less than 5 percent of the Reference Group has a limitation in school activity. Similarly, children in the Disability Group missed more days of school than children in the Reference Group. Large differences between the groups are seen on the Health Status variable with 7.4 percent of children in the Disability group categorized as having Fair to Poor Health, while 2.1 percent of the Reference Group are so classified.

Service Utilization

Table 3 shows that 19.2 percent of children in the Disability Group are currently seeing a mental health provider (counselor, psychiatrist, psychologist or social worker) on a regular basis compared to 1.1 percent of the Reference Group that receives this service. Using a reference period of the past year, 10.8 percent of the Disability Group received Therapy Services, while 3.8 percent received Home Health Services and 5.8 percent received Social Services.

Discussion

Using the data from the NHIS-D, a household health survey, four categories were constructed following the structure set by SED criteria. In lieu of rigorous diagnostic information, children having reported mental/emotional/behavioral problems and/or having significant difficulty in an identified functional area were examined. While the data from the NHIS-D do not accommodate calculating national estimates of children with psychiatric diagnosis, Goodman (1999) has found that asking parents a single question about the presence of mental/emotional/behavioral problems captures a significant portion of the clinical psychiatric population.

Disability Group Identification

We found that 8.3 percent of children in the civilian, noninstitutionalized U.S. population were identified by the Disability Group criteria as having a mental/emotional problem and/or functional limitation. In this study, FL Only is the largest Disability Groupsubclassification, accounting for over half of the Disability Group. In order to identify the group of children with functional impairments only, the Functional limitation variables were included as identifying criteria for the Disability Group. Theoretically, children experiencing significant problems with attention, behavior, or communicating in school are likely to be at greater risk for having a mental/emotional disorder than children who don't have these problems, because most children exhibit behavioral symptoms of psychiatric disorder before actually being diagnosed. Thus, the FL Only sub-group may be considered a population that is at risk for mental/emotional disorders. It is important to note that the functional limitation variables available in the NHIS-D are not exhaustive and include only limitations that affect school functioning and disturbances in social interaction. While school encompasses a large portion of a youth's hours, many problems may negatively impact family and/or community life more than school life; thus functional limitations are likely underrepresented here.

Accounting for 32 percent of the Disability Group, the M/E+ FL group has both types of prob-lems, and may more closely mirror a severely emotionally disturbed population; however, since the impairment questions are not directly linked to the mental, emotional, behavioral problem questions, this group may have an M/E problem that manifests itself in a functional limitation, or an M/E problem and a separate functional impairment.

The M/E Only subclassification yielded the smallest proportion (12. 9 percent) of the Disability Group. Children identified as having M/E Only do not exhibit any of the functional impairments identified. This group represents children who have a mild M/E problem only.

Given the definitional parameters of the identified Disability Group, the 8.3 percent prevalence estimate is likely to be lower than estimates established using full-spectrum diagnostic and functional impairment measures. Indeed, child psychiatric epidemiology literature suggests that the prevalence of SED is between 9 percent and 19 percent, depending on criteria used to establish diagnosis and functional limitation and the reference period (i.e., 3 months, versus 6 months or 1 year) (Friedman, Kutash, & Duchnowski, 1996).

The Disability Group as a whole is predominately male, the data illustrating that mental/emotional problems experienced by girls are less likely to be accompanied by the functional limitations identified here. This pattern is also seen in the literature: 60 percent to 79 percent of the youth population that receive mental-health-related services are male (Freidman et al., 1996). It is not certain whether girls are less troubled than boys, if boys tend to exhibit more disruptive behavior and therefore are more readily identified, or if questions used to measure the impact of mental/emotional problems on girls' functional levels are amiss. If the last were true, it would help to explain why the tides turn once children become adults and women are more likely to be identified as having mental/emotional problems.

The 7-to 10-year-old category carries a larger proportion of children in the Disability Group with proportions leveling off after 11 years old, becoming similar to the proportions in reference population. This age curve may reflect that the problems/limitations children develop during latency years do not always persist into the teenage years. Followup studies indicate that less than half of children (27 percent to 43.5 percent) with mental/emotional disorders still have disorders 4 years later (Ferdinand, Verlhulst, & Wiznitzer, 1995; Offord et al., 1992), but that persistence increases with multiple diagnoses (Costello, 1999).

The age spectrum within the disability subclassifications shows an interesting pattern. While children arrive at school with proportionally fewer identified problems and/or limitations, this quickly changes. Functional limitations begin to emerge rather rapidly (ages 7 to 10), coexistent functional limits and mental/emotional problems follow suit (7 to 12 years), and identification of mental/emotional problems without functional limitation peaks at 9 to 10 years. Thus, these data reflect that children who have an M/E problem along with functional limitation tended to be identified earlier than children with M/E only.

Within the Disability Group emerges distinct patterns among race/ethnicity, family structure, poverty, and MSA. Viewed separately, higher proportions can be seen in black non-Hispanic youth, children from single-parent (mother) families, children from families living in poverty and near poverty, and children living in the central city. What is not clear from these data are the interaction effects of these demographics: that is, which variables, when controlled for by all the others, have significant value as an independent risk factor for mental/emotional problems and/or functional limitation. Poverty alone has been identified as a powerful risk factor, so much so that an algorithm for making state SED estimates includes an adjustment by State income levels (Friedman et al., 1996). Further investigation of these interaction effects is planned.

The impact or burden of having a disability is often measured according to its interference in normal life. From the NHIS-D, information about school limitations, number of days lost from school, and overall health status was used to describe the burden imposed by the disabilities highlighted. Costello (1999) points out that standard measures of disability such as these may not be the most appropriate to measure impact of mental/emotional disturbances as they are designed to capture outcome from medical illness, not mental/emotional illness. The impact of child mental disability is best measured in ways that quantify effects on families such as inability to work/reduced hours of work secondary to having to care for the child, family friction, and social isolation. Despite the potential to miss some facets of impact, findings indicate that children in the Disability Group attend or need more special education services and miss more days of school and are ascribed poorer health status than the Reference Group. With the exception of seeing a mental health provider and receiving social services, the other therapeutic and home health services may be more of a physical disability services measure. About one-fifth of the children in the Disability Group reported seeing a mental health professional, while only 10 percent or fewer were receiving the other services outlined.

Limitations

This is a secondary analysis of data from a household survey on disability. The format used here was based on the classification structure for SED; however, it departs from true SED in several important ways. First, presence of a mental/emotional problem is established via parent report, not by clinical diagnosis as required by SED criteria. Next, impairment is quantified within only one domain and is not causally linked to the mental/emotional problem variables. For SED, impairment can be noted in multiple domains such as home, school, and/or community and the impairment must have some association with the given diagnosis. The fact that parents are asked if their child has a significant impairment in attention, behavior, or communication at school likely weeds out many children who would be considered to have mild difficulties; however, these data do not allow further inquiry as to the nature of these problems, nor to the presence of a clinical disorder.

Conclusions

The largest value of this analysis lies in its ability to compare a population of children who have mental/emotional and/ or functional problems with a reference population that does not have such problems. The sample is representative of the U.S. non-institutionalized, civilian population, meaning the results are generalizable to the United States as opposed to applying only to a specific community or study site that has not used a probability sampling technique. While proportional distributions alone cannot establish characteristics as risk factors, the proportions reported here mirror others' findings that boys and children living in poverty are more likely to be identified as having a mental/emotional disturbance. One contribution this analysis may make is in its discovery that a disproportionate number of 7-and 8-year-old children were identified by the disability variables. Many epidemiological studies focus on the 9-to 17-year-old population. Future studies may want to consider extending their sample to include younger children.

The refinement of structured diagnostic tools and measures of impairment is currently under way within psychiatric epidemiology. Survey methodology is also expanding and making full use of technological advances and questionnaire design techniques to enhance the validity and reliability of the data it collects. Future surveys of child mental health will benefit from these collective advances and will be a rich data source for research and policymaking communities.

References

Alcohol, Drug Abuse and Mental Health Administration Reorganization Act, PL 102-321, Title 42, U.S.C. § 201 et seq. (1992, July 10). U.S.Statutes at Large, 106, 323.

Costello, E. J. (1999). Commentary on "Prevalence and impact of parent-reported disabling mental health conditions among U.S. children." Journal of the American Academy of Child and Adolescent Psychiatry, 38, 610–613.

Ferdinand, R., Verhulst, F., & Wiznitzer, M. Continuity and change of self-reported problem behaviors from adolescence into young adulthood. Journal of the American Academy of Child and Adolescent Psychiatry, 34, 680–690.

Friedman, R. M., Kutash, K., & Duchnowski, A. (1996). The population of concern: Defining the issues. In B. Stroul (Ed.), Children's Mental Health, Creating Systems of Change (pp. 69–96). Baltimore, MD: Brookes.

Goodman, R. (1999). The extended version of the Strengths and Difficulties Questionnaire as a guide to child psychiatric caseness and consequent burden. Journal of Child Psychology and Psychiatry, 40, 791–801.

National Center for Health Statistics. (1997). Data File Documentation, National Health Interview Survey of Disability, Phase I and Phase II, 1994 (machine-readable data file and documentation). Hyattsville, MD: National Center for Health Statistics.

National Center for Health Statistics. (1998). Data File Documentation, National Health Interview Survey of Disability, Phase I and Phase II, 1994 (machine-readable data file and documentation). Hyattsville, MD: National Center for Health Statistics.

Offord, D., Boyle, M., Racine, Y., Fleming, J., Cadman, D., Blum, H., Byrne, C., Links, P., Lipman, E., MacMillan, H., Rae-Grant, N., Sanford, M., Szatmari, P., Thomas, H., & Woodward, C. (1992). Outcome prognosis and risk in a longitudinal follow-up study. Journal of the American Academy of Child and Adolescent Psychiatry, 31, 916–923.

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