Fatimah Sri Ayu Bijak Lestari Assagaf 3
Fatimah Sri Ayu Bijak Lestari Assagaf 3
Fatimah Sri Ayu Bijak Lestari Assagaf 3
Author manuscript
J Behav Health. Author manuscript; available in PMC 2021 August 18.
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Abstract
We analyzed data for 6,458 children with chronic conditions. The most prevalent diagnoses were
mood disorders (8.6%), attention deficit hyperactivity disorder (ADHD; 7.4%), conduct disorders
(6.1%), and anxiety disorders (4.8%). Adjusted odds of having a mental health diagnosis increased
with age for mood disorders and anxiety disorders and decreased with age for ADHD and conduct
disorders. When compared with females, males had lower odds of being diagnosed with mood and
anxiety disorders and higher odds of being diagnosed with ADHD and conduct disorders. Blacks
had lower odds of being diagnosed with anxiety, mood disorders, and ADHD than children in
the other racial category. Hispanics had lower odds of being diagnosed with ADHD than children
in the other racial category. Racial/ethnic minorities were less likely to have a mental health
diagnosis than children in the other race/ethnicity category, which suggests under identification of
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Keywords
mental health diagnosis in children; children with chronic medical conditions; behavioral health
disparities; race and mental health diagnosis
This is an open access article under the terms of the Creative Commons Attribution NonCommercial ShareAlike 4.0 (https://
creativecommons.org/licenses/by-nc-sa/4.0/).
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✉
Contact Anne Elizabeth Glassgow [email protected] University of Illinois at Chicago, Department of Pediatrics, College of
Medicine, Clinical Sciences Building, 840 S. Wood Street, Suite 1301, Chicago, IL, 60612, USA.
Authors’ contributions: All authors have substantially contributed to the preparation of the manuscript, reviewed, and provided
permission for submission to Social Work and Public Health, and agree to be accountable for all aspects of the work. Drs. Glassgow,
Kim, and Ms. Wilder conceptualized, designed, prepared and analyzed the data, and drafted the initial manuscript. Drs. Caskey and
Van Voorhees contributed to the conceptualization of the manuscript and assisted with writing portions of the drafts. Mr. Munoz
prepared the dataset and provided guidance on manuscript preparation. All authors critically reviewed and edited the manuscript
drafts.
Ethics approval and consent to participate: The University of Illinois at Chicago Institutional Review Board approved this study
(protocol #2017–0604).
Consent for publication: The authors consent for the submitted manuscript to be published.
Availability of data and material: The dataset generated and analysis for this study are not publicly available due patient privacy but
are available from the corresponding author on reasonable request.
Competing interests: The authors have no competing interests to disclose.
Glassgow et al. Page 2
Introduction
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Mental health disorders among children are a serious public health concern in the United
States (U.S.) [1]. According to surveillance estimates from the Centers for Disease Control
and Prevention Morbidity and Mortality Weekly Report (MMWR), from 2005–2011the
annual prevalence rate of mental health disorders was between 13%−20% in children
(persons aged <18 years) in the U.S. [2]. The annual prevalence of mental health disorders
in children is steadily rising in the U.S. with an annual estimated cost of $247 billion
[3]. Mental health disorders in children can have a profound and serious impact on peer
and family relationships, educational attainment, and behavior [2]. Half of all mental
health disorders develop before the age of 14 years; and childhood mental health disorders
increase the risk of adult chronic medical conditions, continuing mental health problems,
and decreased productivity and employment [4]. Mental health disorders, along with a
combination of other factors such as substance use and access to lethal means, are also
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associated with suicide, which is the second leading cause of death among children and
young adults aged 10 to 34 years [5].
Children with mental health disorders are more likely to suffer from chronic medical
conditions, such as asthma, diabetes, and epilepsy, compared with children without mental
health disorders [6–9]. However, surveillance of mental health disorders among children
with chronic medical conditions is limited, and the literature has substantial methodological
limitations [2]. For example, many studies have relied on secondary data analyses of
national surveys (e.g., National Survey of Children with Special Health Care Needs), of
caregiver reports of mental health symptoms and problems (e.g., feels anxious or depressed,
and other similar caregiver indicators of mental health problems) rather than clinical
assessment using diagnostic criteria [2]. Reports of mental health symptoms in children
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vary based on the individual who is reporting and the measure used in the evaluation
[2,9]. Evidence suggests that parents are more likely to report externalizing mental health
symptoms (e.g., hyperactivity or aggression) than to report internalizing mental health
symptoms (e.g., feelings of sadness, worry, hopelessness), which might introduce bias in
estimates of mental health symptoms [9,10]. Documenting the prevalence of mental health
disorders among children with chronic medical conditions is critical for providers so that
they can identify children at higher risk for mental health disorders, provide screening,
diagnosis, and subsequent treatment. In addition, early identification can prevent further
problems in this at-risk group of children, including poor health, mental health, and social
outcomes. Prevalence estimates also inform the development of mental health policies and
resource allocation [9,11].
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We analyzed data from the Coordinated Health Care for Complex Kids (CHECK)
program in Chicago to examine the prevalence of mental health diagnoses among publicly
insured children with chronic medical conditions. The current study had two goals: 1)
to describe the distribution of the most common mental health diagnoses among children
with chronic medical conditions who are enrolled in CHECK, and 2) to examine how
the presence of mental health diagnoses may differ by age, race/ethnicity, and type of
chronic medical condition (asthma, diabetes, sickle cell disease, epilepsy, and other chronic
medical conditions). This study adds to the literature by examining children with mental
health disorders that were diagnosed by clinicians using the International Classification of
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Methods
Study Sample
Data for this study were from CHECK, a $19.8 million demonstration project funded by the
Centers for Medicare and Medicaid Innovation Center [12]. The CHECK program provided
comprehensive services (care coordination, oral health, provider support, technology
systems, legal services, and behavioral health) to address the social determinants of health of
publicly insured children with chronic medical conditions. The CHECK intervention model
is described in detail elsewhere [12–17],.
The data for this study were collected from December 1, 2014 through September 1, 2017.
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Children were identified for CHECK program eligibility based on Medicaid claims data
that included their medical diagnosis, age, and Medicaid eligibility. The CHECK program is
located at the University of Illinois at Chicago, which has a primary service area that covers
approximately 2 million people including the poorest communities in Chicago, IL [18].
Our analytic sample included children between age 5–18 who were enrolled in Medicaid
and had a diagnosis of asthma, diabetes mellitus, sickle cell disease, and/or epilepsy (target
diagnoses). The CHECK program targeted these chronic conditions because of the high
prevalence of asthma and the high medical needs and costs associated with the other
conditions. Many of the CHECK participants had more than one of the chronic conditions
and may also have had other conditions such as obesity, food allergies, and hypertension.
For the purposes of this study, we analyzed the chronic conditions targeted by the CHECK
program. The CHECK program did not target children with mental health diagnoses for
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enrollment. The University of Illinois at Chicago Institutional Review Board approved this
study (protocol #2017–0604).
Measures
Mental health diagnoses were extracted using ICD codes from Medicaid claims data. We
developed a list of codes a priori and then screened for identification of these codes.
We limited our analyses to the four most prevalent mental health diagnostic categories
among the sample; (1) mood disorders [F30-F39], (2) attention deficit hyperactivity disorder
(ADHD) [F90], (3) anxiety disorders [F40-F48], and (4) conduct disorders [F91]). Conduct
disorders included oppositional defiant disorder (F91.3). Mental health diagnoses were
not mutually exclusive, children with any combination of the four most prevalent mental
health diagnostic categories were included. The covariates, age, sex, and chronic medical
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condition, were extracted from medical claims data. Age was categorized as 5–8, 9–13, and
14–18. Sex was dichotomized female or male. Chronic medical condition was categorized
as asthma, diabetes, sickle cell disease, epilepsy, or other. Race/ethnicity was categorized as
Black, Hispanic, or other. Because a large proportion of children’s race/ethnicity variable
was missing (10.9%), race/ethnicity was imputed using the multiple imputation method.
Missing race/ethnicity was predicted from the distribution of observed data iteratively [19]
with improved degrees of freedom for multivariate significance tests obtained from multiple
imputed datasets [20,21]. The variable was estimated 40 times, which allows a reasonable
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level of power falloff, less than 5%, that is acceptable considering the fact that our dataset
has a relatively large sample size [22]. Census tract level sociodemographic variables were
used for the multiple imputation including: % Black, % White, % Hispanics, % of females
with less than high school education, and % of children with asthma and diabetes. A total of
705 cases were imputed.
Data analysis
Data were analyzed using Stata® 15 (Stata Corporation LP, College Station, TX, USA).
Univariate analyses were performed to describe the distribution within the sample. Bivariate
analyses were conducted to identify variables that were significantly associated with mental
health diagnoses. Logistic regression adjusting for age, sex, race/ethnicity, and chronic
medical condition was used to examine predictors of a diagnosis of a mental health
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diagnosis. Adjusted predicted probabilities were calculated post estimation for age groups
stratified by race/ethnicity. An alpha of 0.05 was used to determine significance for all
statistical comparisons.
Results
The sample included 6,458 children (Table 1) and contained more males (57.1%) than
females (42.9%). There were fairly equal numbers of children within the three age
categories, with 32.2% of children aged 5–8, 35.3% aged 9–13, and 32.5% aged 14–18.
About 94% of the children were racial and ethnic minorities. The most common chronic
medical condition was asthma (73.9%) followed by chronic conditions in the “other”
category (16.7%), diabetes (4.8%), epilepsy (3.2 %), and sickle cell disease (1.5%). Overall,
15.4% of children had one or more mental health diagnoses. The most prevalent diagnoses
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were mood disorders (8.6%), followed by ADHD (7.4%), conduct disorders (6.1%), and
anxiety disorders (4.8%). Of the sample, 5.5 % had only one reported mental health
diagnosis, 6.1% had two, and 6.0% had three or more.
In the bivariate analyses (Table 2), mood disorders, ADHD and anxiety disorders
were significantly associated with age, sex, and race/ethnicity. Conduct disorders were
significantly associated with age and sex, but not with race/ethnicity categories (Table 2).
Diabetes was associated with mood and anxiety disorders, sickle cell disease was associated
with ADHD, anxiety disorder, and conduct disorders, and other chronic conditions was
associated with conduct disorders. The multivariable analyses (Table 3) show that the
adjusted odds of diagnoses increased with age for all four mental health diagnostic
categories. Males had lower odds of being diagnosed with mood and anxiety disorders
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and higher odds of being diagnosed with ADHD and conduct disorders when compared with
females. Blacks had lower odds of being diagnosed with anxiety and mood disorders and
ADHD than children in the other race/ethnicity category. Hispanics had lower odds of being
diagnosed with ADHD compared with children in the other race/ethnicity category. Children
with asthma had higher odds of being diagnosed with mood, anxiety, conduct disorders
and ADHD compared with children in the other chronic condition category. Children with
epilepsy had significantly higher odds of being diagnosed with anxiety disorders, ADHD,
and conduct disorders. The predicted probability of diagnosis was significantly associated
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with child’s age (Figure 1). Diagnosis of mood and anxiety disorders and conduct disorders
increased with age. For ADHD, the probability of diagnosis increased from age category
5–8 to age category 9–13 and then decreased after age 14. The probability of receiving a
diagnosis of an anxiety or mood disorder was lower for Blacks than for Hispanics and for
children in the other race/ethnic category. The probability of being diagnosed with ADHD
was significantly higher for children in the other race/ethnicity category than Blacks and
Hispanics. However, the probability of being diagnosed with conduct disorders was similar
for Blacks and children in the other race/ethnic category and lower in Hispanics.
Discussion
Our study found higher rates of mental health diagnoses among children with chronic
medical conditions when compared with national estimates of children without chronic
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medical conditions [2]. Also, compared with findings from the MMWR, we found that
children in our cohort had higher rates of mood disorders (8.6% v. 2.1–6.7%), anxiety
disorders (4.8% v. 0.7–3%), and conduct disorders (6.1% v. 2.1–3.5%), and similar rates of
ADHD (7.4% v. 6.8–8.6%) [2]. One study found that after controlling for sociodemographic
and healthcare variables, children with at least one chronic medical condition were 62%
more likely to have a mental health diagnosis compared with children without chronic
medical conditions [23]. Consistent with our findings, children with asthma, epilepsy, and
diabetes have been found to have higher rates of mental health diagnoses than children
without these conditions [8]. We also found that age and sex were significantly associated
with all four the of the mental health diagnoses. Similar to national estimates, prevalence
of mood, anxiety, and conduct disorders increased with age and children age 8 and younger
and 15 and older were less likely to be diagnosed with ADHD compared with children
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age 9–14 [2]. Consistent with existing studies, males were less likely to be diagnosed with
internalizing disorders (e.g., mood and anxiety disorders) and more likely to be diagnosed
with externalizing disorders (e.g., ADHD and conduct disorders) compared with females
[24].
The CHECK cohort is comprised of children with chronic medical conditions who are
predominantly racial/ethnic minorities and enrolled in public health insurance. The cohort
represents a particularly vulnerable and marginalized group of children, and we argue
that the disparity in the higher mental health diagnostic rates between the cohort and the
general population is due to the compounding effects of having a chronic medical condition,
living in poverty, and the experiences of being a racial/ethnic minority. Children with
chronic medical conditions and their families experience additional social, psychological,
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and financial stress that impact children’s development, their social and academic outcomes,
and their functioning [25]. Likewise, living in poverty can impede children’s healthy
development and lead to multiple adverse outcomes throughout the life course, including
poor mental health [26, 27],. The intersection of poverty and racial/ethnic minority status
is a complex interaction that produces disparities in financial and psychosocial resources,
exposure to environmental risks, and differential access to health and behavioral health care
[4]. Indeed, disparities in access to mental health care persists across time for racial/ethnic
minorities [26,28].
The environment is an important predictor of the prevalence and course of mental health
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disorders [26]. Children in this cohort reside in highly disadvantaged areas of Chicago,
IL with high rates of violence and disorganization [18]. These structural conditions shape
children’s lives and opportunities and have lasting social, physical, and mental health
consequences [26]. Structural factors, including neighborhood living conditions, such as
racial residential segregation, concentrated disadvantage, and violence play an important
role in producing and maintaining health and behavioral health disparities [4]. Racial/ethnic
minority children are disproportionately exposed and impacted by adverse factors such
as trauma, stress, pollution, poor housing, violence, and bullying that produce harmful
mental health outcomes [26,29]. In general, exposure to toxic stress and adverse childhood
experiences are well-documented determinants of mental health problems and disorders
[6,26],. Our findings warrant additional research to develop and test interventions that
incorporate a multilevel approach to address the mental health of children with chronic
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We found that Blacks had lower odds of diagnosis of mood and anxiety disorders and
ADHD than children in the other racial/ethnic category. Hispanics had lower odds of
diagnosis of ADHD compared with children in the other racial/ethnic category. This
difference in prevalence suggests a further disadvantage for racial/ethnic minority children if
they have a mental health disorder but may not have been diagnosed with it. Previous studies
also have found lower rates of diagnosis of ADHD in minority children compared with
White children; moreover, confounding factors, such as poverty and limited access to care,
have not explained the disparity in diagnosis and treatment, which seems to suggest that
the disparity is related primarily to the children’s status as a racial/ethnic minority [6,30].
The lower rate of mental health diagnoses among racial/ethnic minority children compared
with children who are non-minority children may reflect the lack of access to mental health
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services in Chicago, particularly in the most disadvantaged areas where minorities reside
[31]. State mental health funding has dramatically decreased in Illinois between 2011–2017
which are the years before and during enrollment in CHECK [31]. For example, between
2009 and 2012 Illinois made a $187 million cut to mental health spending which was the
fourth-largest decrease nationally [30] (Advocates, 2015). Then, at the city-level in 2012,
the Chicago Department of Public Health consolidated 12 city mental health centers to six
which may have further limited access to care [31].
Black children in the cohort were equally diagnosed with conduct disorders compared
with children in the other racial/ethnic category. Children with conduct disorders display
a pervasive pattern of behavior that is characterized by violating the rights of others,
societal norms, and/or rules [32]. Often, children with conduct disorders engage in verbal
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and physical aggression towards others, bullying, cruelty towards animals, destruction of
property, and severe rule violations across a variety of settings [32]. Among children aged
3–17 years, 8.1% of Blacks, 4.2% of Whites, and 3.9% of Hispanics report ever receiving
a behavioral or conduct problem diagnosis and/or conduct problems have been reported
by parents [2]. Available data of the lifetime prevalence of conduct disorders is 6.9% for
Hispanics, 4.9% for Blacks, and 5.0% for Whites [33]. Multiple studies have documented
that this diagnosis a strong predictor of later antisocial and criminal behavior and a multitude
of other problematic issues such as co-occurring mental health diagnoses, substance abuse,
legal problems, academic, and occupational problems [34–37],. Some researchers have
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argued that diagnostic bias contributes to over diagnosis of conduct disorders in minority
children who then often face poorer mental health and juvenile justice outcomes than their
White counterparts [38,39].
Our study had several limitations. One of the limitations of our study was missing race/
ethnicity data. Medical claims data do not include race/ethnicity. The race/ethnicity data
we used were collected by CHECK field-staff members who conducted assessments with
families and entered the data into the medical record. We also received race/ethnicity data
from schools. To address the missing race/ethnicity data, we imputed the data using the
STATA multiple imputation method [40]. All other variables (i.e., age, sex, chronic medical
condition) were obtained from the medical claims.
It is likely that mental health disorders were underestimated in our population. First,
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previous studies have found that many children are not screened for mental health disorders
[1,26]. This is likely to be the case in our population. As a result, many of the children who
were not identified and diagnosed in our sample could still have mental health disorders.
Second, our study focused only on diagnosed mental health disorders. It is estimated
that sub-threshold mental health disorders affect a large proportion of the population, [4].
Consequently, it is possible that our findings might have been different if we had the means
to collect and include sub-threshold mental health disorders. Finally, medical claims data
may include coding errors or missing documentation. .
Another limitation is the potential for misdiagnosis, which occurs in the information
gathering from the informant (e.g., child and parent) and/or influences on the clinician
diagnosing the child [41]. Many clinicians have not received training in diagnosing mental
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health disorders, therefore it is possible that children may have been inaccurately diagnosed
(e.g., misclassified). Moreover, clinicians rely on clusters of defined feelings, thoughts,
and behaviors described in the ICD to diagnosis mental health disorders, which requires
clinical judgement. Clinicians’ judgement in diagnosing patients is affected by their training,
heuristics, and biases [41]. Finally, evidence suggests that intentional over diagnosis of
mental health disorders is a common practice because access to and reimbursement for
treatment requires patients to have a documented mental health disorder. The study was
limited to the data available about children and their families. All children were publically
insured, however, most likely there was a range of socioeconomic factors and conditions
that influence family’s experiences and access to care. Finally, this study examined data
from children in the CHECK program who have chronic medical conditions, are enrolled
in Medicaid, and reside in Chicago. As such, the results may not be generalizable to other
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children without chronic medical conditions, who are not publicly insured, and/or reside
outside of Chicago.
Our study advances knowledge about the prevalence of mental health diagnoses among
children with chronic medical conditions, documents the magnitude of the needs of
this cohort, and contributes to the growing literature documenting pediatric comorbidity
of chronic medical conditions and mental health diagnoses. We analyzed data from a
large cohort to ascertain prevalence estimates based on clinician diagnosed mental health
disorders. Understanding the prevalence of mental health diagnoses among children with
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chronic conditions is vital for planning and allocating resources for comprehensive health
and mental health care delivery services, including pediatric universal mental health
screening [42].
Our findings document the high prevalence of mental health diagnoses among children with
chronic conditions and also raises awareness among clinicians and policymakers about the
need for models of care delivery that integrate health and behavioral health care coordination
and management. Although we report a higher prevalence of mental health diagnoses in our
large cohort of children with chronic medical conditions compared with national estimates
of children without chronic medical conditions, it is likely that the true prevalence of mental
health diagnoses among this group of children may be even higher. Other studies have
shown the children who were racial and ethnic minorities were less likely to have a mental
health diagnosis when compared with White children, which suggests under identification
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Acknowledgements
The authors thank Michael Gerges, Kenneth Rasinski, and Alan Schwartz for their critical review of this manuscript
and Richard T. Campbell for his statistical expertise and guidance. The authors also would like to acknowledge
Teena Purohit, Griffin Wright, Katherine Wright, Aaron Van Til, and Amanda Zhang for their assistance with the
literature review.
Funding:
This publication was made possible by Grant Number 1C1CMS331342 from the Department of Health and Human
Services, Centers for Medicare & Medicaid Services. The contents of this publication are solely the responsibility
of the authors and do not necessarily represent the official views of the U.S. Department of Health and Human
Services or any of its agencies. The research presented here was conducted by the awardee. Findings might or might
not be consistent with or confirmed by the findings of the independent evaluation contractor. Research reported
in this publication also was supported by the National Institute On Minority Health and Health Disparities of the
National Institutes of Health under Award Number U54MD012523. The content is solely the responsibility of the
authors and does not necessarily represent the official views of the National Institutes of Health.
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Abbreviations:
ADHD Attention Deficit Hyperactivity Disorder
CI Confidence Interval
Clinical Modification
MMWR Centers for Disease Control and Prevention Morbidity and Mortality
Weekly Report
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Figure 1.
Probability of children with chronic medical conditions enrolled in CHECK being diagnosed
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with mental health disorders by age and race, 2014–2017 (N = 6458): Chicago, IL.
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Table 1.
Sample characteristics and prevalence of mental health disorders among children with chronic medical conditions enrolled in CHECK, 2014–2017.
Glassgow et al.
Total No mental health diagnosis Mental health diagnosis
P
6458 (100.0%) 5463 (84.6%) 995 (15.4%)
Age
5–8 years 2077 (32.2) 35.5 17.2
9–13 years 2282 (35.3) 35.3 35.5 <.01
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Table 2.
Prevalence and characteristics of mental health diagnoses among children with chronic medical conditions enrolled in CHECK, 2014–2017.
Glassgow et al.
Prevalence of Mental Health Disorders
Age
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Table 3.
Adjusted odds ratios of children with chronic medical conditions enrolled in CHECK being diagnosed with a mental health disorder by demographic and
Glassgow et al.
health characteristics, 2014–2017 (N = 6458)
Age Category
5–8 years 0.25* (0.18, 0.36) * 0.46* (0.36, 0.59) * 0.42* (0.29, 0.62) * 0.31* (0.21, 0.46) *
J Behav Health. Author manuscript; available in PMC 2021 August 18.
Sex
Female Reference Reference Reference Reference
Male 0.66* (0.55, 0.78) * 2.41* (1.94, 2.99) * 0.71* (0.56, 0.89) * 1.83* (1.47, 2.28) *
Race/ethnicity
Other Reference Reference Reference Reference
Black 0.51* (0.35, 0.74) * 0.64 (0.43, 0.94) * 0.31* (0.20, 0.54) * 1.00 (0.64, 1.62)
Hispanic 0.72 (0.49, 1.05) 0.59 (0.39, 0.89) * 0.96 (0.61, 1.51) 0.85 (0.51, 1.40)
Chronic Condition
Other Reference Reference Reference Reference
Asthma 1.32* (1.05, 1.67) 1.37 (1.07, 1.76) * 1.68* (1.23, 2.29) * 1.54* (1.18, 2.00) *
Diabetes 1.29 (0.89, 1.85) 1.11 (0.69, 1.81) 1.43 (0.89, 2.31) 1.20 (0.72, 2.01)
Epilepsy 1.22 (0.74, 2.01) 3.51* (2.38, 5.18) * 3.08* (1.87, 5.06) * 3.16* (2.09, 4.78) *
Sickle cell disease 1.49 (0.71, 3.13) 0.52 (0.16, 1.70) 2.45 (0.94, 6.39) 1.29 (0.55, 3.06)
Note. ADHD = Attention Deficit Hyperactivity Disorder; OR = odds ratio; CI = confidence interval. Adjusted odds ratios were estimated using multivariable logistic regression.
**
p<.01,
*
p<05
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