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Mental Disorders and Disabilities Among Low-Income Children (2015)

Chapter: Appendix D: Surveys and Surveillance Systems That Collect Data on Mental Disorders Among Children

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Suggested Citation:"Appendix D: Surveys and Surveillance Systems That Collect Data on Mental Disorders Among Children." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
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Suggested Citation:"Appendix D: Surveys and Surveillance Systems That Collect Data on Mental Disorders Among Children." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
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Name, Website, and Sponsor Description Method of Data Collection

Autism and Developmental Disabilities Monitoring (ADDM) Network

http://www.cdc.gov/ncbddd/autism/addm.html

Sponsor: Centers for Disease Control and Prevention (CDC) National Center on Birth Defects and Developmental Disabilities

The ADDM Network is a group of CDC-funded programs that determine the prevalence of autism spectrum disorders (ASDs) in U.S. communities. ADDM sites collect data using the same surveillance methods, which are modeled after the CDC Metropolitan Atlanta Developmental Disabilities Surveillance Program. Screening and abstraction of existing health and education records containing professional assessments of the children’s developmental progress at health care or education facilities
Suggested Citation:"Appendix D: Surveys and Surveillance Systems That Collect Data on Mental Disorders Among Children." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
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Survey Topics Related to Children Mental Health Topics and Questions Related to Children Populations and Periodicity

Child demographic characteristics, including sex, race/ethnicity, and year of birth

Previous diagnoses of intellectual disability and cerebral palsy

Use of special education services

Previous and current special education exceptionality (eligibility) classification

Results from standardized developmental assessments (such as IQ)

Previous diagnosis of ASD

Clinical features, symptoms, and behaviors associated with ASD, intellectual disability, or cerebral palsy

Age of child when first symptoms noted and at first diagnosis of ASD, intellectual disability, or cerebral palsy

Other developmental and mental disorders that occur with ASD, intellectual disability, and cerebral palsy (e.g., attention deficit hyperactivity disorder [ADHD])

Selected sample based on grantees.

Fourteen ADDM Network sites for 2008. Children aged 8 years with evidence documented in abstracted evaluations indicating the presence of autistic disorder; pervasive developmental disorder, not otherwise specified; or Asperger’s disorder.

Biennial (even years): 2000, 2002, 2004, 2006, and 2008.

Suggested Citation:"Appendix D: Surveys and Surveillance Systems That Collect Data on Mental Disorders Among Children." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
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Name, Website, and Sponsor Description Method of Data Collection

National Health and Nutrition Examination Survey (NHANES)

http://www.cdc.gov/nchs/nhanes.htm

Sponsor: CDC National Center for Health Statistics

NHANES is designed to assess the health and nutritional status of adults and children in the United States. The survey combines interviews and physical examinations.

In-person household interviews

Nutritional assessments

Laboratory tests

Physical examinations

DNA repository

Suggested Citation:"Appendix D: Surveys and Surveillance Systems That Collect Data on Mental Disorders Among Children." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
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Survey Topics Related to Children Mental Health Topics and Questions Related to Children Populations and Periodicity

Health care use

Mental, behavioral, and emotional problems of children

Numerous diseases, medical conditions, and health indicators

Age/topic/method/dates: 12+/Depression screener/ (CAPI)/2005, 2006 12–19/Conduct disorders/ (ACASI)/1999 on 8–19/Depression/ (CDISC)/2000–2004 8–15/ADHD/(parent CDISC)/2000–2004 8–15/Conduct disorders/(parent CDISC)/2000–2004 8–15/Depression/(parent CDISC)/2000–2004 No data yet published.

Use of mental health care services

Activity limitations because of poor physical or mental health

Mental disorder diagnosis using the National Institute of Mental Health Diagnostic Interview Schedule for Children (1999–2004: generalized anxiety disorder and panic disorder; 2000–2004: eating disorders, elimination disorders, major depression/dysthymic disorder, ADHD, and conduct disorder); ages 8–15 years, varying by module

Depression screener (PHQ-9; since 2005)

Mentally unhealthy days (since 2001)

Nationally representative sample.

5,000 people per year, including approximately 1,000 persons aged 12–19 years.

Oversampling, which changes periodically; in 2011–2012 and 2013–2014, oversample of Hispanics, blacks, Asians, and older adults.

Suggested Citation:"Appendix D: Surveys and Surveillance Systems That Collect Data on Mental Disorders Among Children." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
×
Name, Website, and Sponsor Description Method of Data Collection

National Survey of Children’s Health (NSCH)

http://www.cdc.gov/nchs/slaits/nsch.htm

Sponsor: Health Resources and Services Administration

Administrator: CDC National Center for Health Statistics

NSCH examines the physical and emotional health of children aged 0–17 years, emphasizing factors that might relate to the well-being of children. Telephone interviews, with National Immunization Survey sampling frame
Suggested Citation:"Appendix D: Surveys and Surveillance Systems That Collect Data on Mental Disorders Among Children." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
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Survey Topics Related to Children Mental Health Topics and Questions Related to Children Populations and Periodicity

Physical, emotional, and dental health

Children with special health care needs

Health care access, use, and barriers

Questions asked for ADHD, depression, anxiety, oppositional defiant disorder, behavioral or conduct problems, autism, developmental delay, Tourette syndrome:

Has a doctor or other health care provider ever told you that selected child (SC) had…?

Does SC currently have…? Would you describe his/her … as mild, moderate, or severe?

In case of ADHD, a fourth question is asked:

Is SC currently taking medication for ADD or ADHD?

Results not yet published.

Activity, social, or learning limitation resulting from mental, emotional, or behavior problems

Common acute and chronic conditions (including learning disability, ADHD, depression, anxiety, behavior and conduct disorders, ASD, Tourette syndrome, and epilepsy)

Social behavior, emotional difficulties, and school engagement

Mental health care treatment and services used

Representative sample nationally and within each state of households with children. Data collected from responsible adult by telephone.

Approximately 95,000 children aged ≤17 years.

Periodic: data collected approximately every 4 years and currently available for 2003, 2007, and 2011–2012.

Suggested Citation:"Appendix D: Surveys and Surveillance Systems That Collect Data on Mental Disorders Among Children." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
×
Name, Website, and Sponsor Description Method of Data Collection

National Survey on Drug Use and Health (NSDUH)

https://nsduhweb.rti.org

Sponsor: Substance Abuse and Mental Health Services Administration

NSDUH data are used to provide national and state-level estimates on the use of tobacco products, alcohol, illicit drugs (including nonmedical use of prescription drugs), and mental illness in the United States In-person household interviews
Suggested Citation:"Appendix D: Surveys and Surveillance Systems That Collect Data on Mental Disorders Among Children." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
×
Survey Topics Related to Children Mental Health Topics and Questions Related to Children Populations and Periodicity

Health conditions

Health care use

Designed to produce drug and alcohol use incidence and prevalence estimates and report the consequences and patterns of use and abuse in the general U.S. civilian population ages 12 and older. Since 1994, questions added on mental health and access to care. Treatment for youth ages 12–17 is defined as receiving treatment or counseling for problems with behaviors or emotions from specific mental health or other health professionals in school, home, or from other outpatient or inpatient settings in the past year

A module on lifetime and past year prevalence of major depressive episode (MDE), severity of the MDE as measured by role impairments, and treatment for depression was administered to adults ages 18 or older and youth ages 12–17, from 2004 to 2006; 8.5 percent of youth had an episode of MDE in the past 12 months (see http://oas.samhsa.gov/2k8/youthDepress/youthDepress.pdf)

Lifetime and past year major depressive episode

Level of impairment resulting from major depressive disorder, substance use, and substance use disorder

Mental health service use

State and nationally representative sample.

7,200 primary sampling units each year and approximately 70,000 respondents aged ≥12 years, including 23,000 aged 12–17 years and 23,000 aged 18–25 years.

Annual and continuous since 1992.

Data includes 397

Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) diagnoses.

Suggested Citation:"Appendix D: Surveys and Surveillance Systems That Collect Data on Mental Disorders Among Children." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
×
Name, Website, and Sponsor Description Method of Data Collection

National Comorbidity Survey-Adolescent Supplement (NCS-A)

http://www.hcp.med.harvard.edu/ncs

National psychiatric epidemiologic survey of adolescents ages 3–17 Adolescent interviews and information was collected from a parent or a parent surrogate to obtain an additional perspective on the adolescent’s mental health and its correlates

REFERENCES

Merikangas, K. R., S. Avenevoli, E. J. Costello, D. Koretz, and R. C. Kessler. 2009. National comorbidity survey replication adolescent supplement (NCS-A): I. Background and measures. Journal of the American Academy of Child & Adolescent Psychiatry 48(4):367–379.

Perou, R., R. H. Bitsko, S. J. Blumberg, P. Pastor, R. M. Ghandour, J. C. Gfroerer, S. L. Hedden, A. E. Crosby, S. N. Visser, L. A. Schieve, S. E. Parks, J. E. Hall, D. Brody, C. Simile, W. W. Thompson, J. Baio, S. Avenevoli, M. D. Kogan, and L. N. Huang. 2013. Mental health surveillance among children—United States, 2005–2011. Morbidity and Mortality Weekly Report 62(2):1–35.

Suggested Citation:"Appendix D: Surveys and Surveillance Systems That Collect Data on Mental Disorders Among Children." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
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Survey Topics Related to Children Mental Health Topics and Questions Related to Children Populations and Periodicity
 

Lifetime-to-date and current prevalence, age-of-onset distributions, course, and comorbidity of DSM-IV disorders: anxiety disorders, mood disorders, behavior disorders, substance disorders

Identify risk and protective factors for the onset and persistence of these disorders

Describe patterns and correlates of service use for these disorders

Survey of 10,148 adolescents.
Suggested Citation:"Appendix D: Surveys and Surveillance Systems That Collect Data on Mental Disorders Among Children." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
×

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Suggested Citation:"Appendix D: Surveys and Surveillance Systems That Collect Data on Mental Disorders Among Children." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
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Suggested Citation:"Appendix D: Surveys and Surveillance Systems That Collect Data on Mental Disorders Among Children." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
×
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Suggested Citation:"Appendix D: Surveys and Surveillance Systems That Collect Data on Mental Disorders Among Children." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
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Suggested Citation:"Appendix D: Surveys and Surveillance Systems That Collect Data on Mental Disorders Among Children." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
×
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Suggested Citation:"Appendix D: Surveys and Surveillance Systems That Collect Data on Mental Disorders Among Children." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
×
Page 393
Suggested Citation:"Appendix D: Surveys and Surveillance Systems That Collect Data on Mental Disorders Among Children." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
×
Page 394
Suggested Citation:"Appendix D: Surveys and Surveillance Systems That Collect Data on Mental Disorders Among Children." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
×
Page 395
Suggested Citation:"Appendix D: Surveys and Surveillance Systems That Collect Data on Mental Disorders Among Children." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
×
Page 396
Suggested Citation:"Appendix D: Surveys and Surveillance Systems That Collect Data on Mental Disorders Among Children." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
×
Page 397
Suggested Citation:"Appendix D: Surveys and Surveillance Systems That Collect Data on Mental Disorders Among Children." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
×
Page 398
Suggested Citation:"Appendix D: Surveys and Surveillance Systems That Collect Data on Mental Disorders Among Children." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
×
Page 399
Suggested Citation:"Appendix D: Surveys and Surveillance Systems That Collect Data on Mental Disorders Among Children." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
×
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Children living in poverty are more likely to have mental health problems, and their conditions are more likely to be severe. Of the approximately 1.3 million children who were recipients of Supplemental Security Income (SSI) disability benefits in 2013, about 50% were disabled primarily due to a mental disorder. An increase in the number of children who are recipients of SSI benefits due to mental disorders has been observed through several decades of the program beginning in 1985 and continuing through 2010. Nevertheless, less than 1% of children in the United States are recipients of SSI disability benefits for a mental disorder.

At the request of the Social Security Administration, Mental Disorders and Disability Among Low-Income Children compares national trends in the number of children with mental disorders with the trends in the number of children receiving benefits from the SSI program, and describes the possible factors that may contribute to any differences between the two groups. This report provides an overview of the current status of the diagnosis and treatment of mental disorders, and the levels of impairment in the U.S. population under age 18. The report focuses on 6 mental disorders, chosen due to their prevalence and the severity of disability attributed to those disorders within the SSI disability program: attention-deficit/hyperactivity disorder, oppositional defiant disorder/conduct disorder, autism spectrum disorder, intellectual disability, learning disabilities, and mood disorders. While this report is not a comprehensive discussion of these disorders, Mental Disorders and Disability Among Low-Income Children provides the best currently available information regarding demographics, diagnosis, treatment, and expectations for the disorder time course - both the natural course and under treatment.

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