This report summarizes the presentations and discussions at the Workshop on Integrating New Measures of Serious Emotional Disturbance in Children into the Substance Abuse and Mental Health Services Administration’s (SAMHSA) Data Collection Programs, held in Washington, D.C., in June 2015. The workshop was organized as part of a study sponsored by SAMHSA and the Office of the Assistant Secretary for Planning and Evaluation (ASPE) of the U.S. Department of Health and Human Services (DHHS) to assist SAMHSA in its responsibilities to expand the collection of behavioral health data in several areas. The workshop was structured to bring together experts in the measurement of serious emotional disturbance in children and in health survey methods to facilitate discussion of measures and mechanisms most promising for expanding SAMHSA’s data collections in this area.
The overall effort is being overseen by the Standing Committee on Integrating New Behavioral Health Measures into the Substance Abuse and Mental Health Services Administration’s Data Collection Programs.1 In addition to new measures of serious emotional disturbance in children, SAMHSA and ASPE are interested in expanding data collection on specific mental illness diagnoses with functional impairment, on trauma, and
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1For a description of the overall study, see http://sites.nationalacademies.org/DBASSE/CNSTAT/Behavioral_Health_Measures_Committee/index.htm [October 2015].
on recovery from substance use or mental disorder. Workshops on all four topics are being planned as part of the overall effort.
In his introductory remarks about SAMHSA’s goals for the workshop, Neil Russell (SAMHSA) explained that the agency has a legislative mandate to provide national and state-level estimates of serious emotional disturbance in children. The primary motivation for collecting the data is the block grant for community mental health services, which was established by the Alcohol, Drug Abuse, and Mental Health Administration Reorganization Act of 1992. The block grant is administered by SAMHSA and provides funds to support state-level services for children with serious emotional disturbance and for adults with serious mental illness.
Russell said that for the purposes of SAMHSA’s work, the definition of child serious emotional disturbance is the definition published in a 1993 Federal Register notice (58 FR 29425, May 20), which included the following elements:
- children from birth up to age 18
- who currently or any time during the past year
- have had a diagnosable mental, behavioral, or emotional disorder of sufficient duration to meet diagnostic criteria specified within DSM-III-R2
- which has resulted in functional impairment which substantially interferes with or limits the child’s role or functioning in family, school, or community activities.
Two important aspects of the definition are mental disorders and impairment. The intent of the definition is to ensure the availability of targeted grant fund allocations for those children with the most severe functional impairments. The definition also intentionally excludes substance use disorders because of the availability of other resources for substance abuse facilities and substance abuse treatment organizations.
Prior to commissioning this study from the National Academies of Sciences, Engineering, and Medicine, SAMHSA convened two panels of its own to address some fundamental questions associated with the mea-
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2The DSM-III-R was the 1987 (current at the time) edition of the Diagnostic and Statistical Manual of Mental Disorders, a standard classification of mental disorders published by the American Psychiatric Association.
surement of child serious emotional disturbance.3 One question was how the new edition of the Diagnostic and Statistical Manual of Mental Disorders (American Psychiatric Association, 2013) or DSM-5, affects the definition, and in particular, which disorders should be included in the definition. The second question was whether suitable instruments are available to measure these disorders and impairment within the context of the definition. A summary of the two panel meetings was made available to the steering committee for this workshop.
The workshop and the standing committee are expected to assist SAMHSA with exploring these options further, both in terms of deciding what instruments to use and the data collection approach. Some of the measurement considerations include whether the instruments available are suitable for use with the data collection modes that may be feasible and for the population of interest. Another consideration is whether the instrument has been validated for use with Spanish-speaking populations.
In terms of data collection approach, Russell described four options that SAMHSA has been considering. One option would be to use the existing National Survey on Drug Use and Health (NSDUH). The main challenge with this approach is that the average NSDUH interview is 60 minutes, and SAMHSA would prefer not to increase the amount of time, so adding new questions would require identifying existing questions that could be dropped.
A second option would be to reinstate the Mental Health Surveillance Study (MHSS), which was conducted as a follow-up study to the NSDUH between 2008 and 2012. The MHSS was designed to be used in a statistical model that would generate estimates of serious mental illness. Although there were some challenges associated with this approach (described in the afternoon by Heather Ringeisen and Jeremy Aldworth, RTI International), a similar design could be considered.
If the scope of the planned data collection project is expected to be larger than can be accommodated as part of the NSDUH, a third option would be to design a new stand-alone data collection. A fourth option would be to identify an existing data source that already includes the data being sought. For all of these options, both direct and model-based estimation methods could be considered.
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3Substance Abuse and Mental Health Services Administration, Center for Behavioral Health Statistics and Quality. (In press). Serious Emotional Disturbance (SED) Expert Panel Meeting: Operationalizing the SED Definition for the Production of National and State Prevalence Estimates, September 8, 2014, Gaithersburg, MD [meeting notes]. Rockville, MD: Author; Substance Abuse and Mental Health Services Administration, Center for Behavioral Health Statistics and Quality. (In press). Serious Emotional Disturbance (SED) Expert Panel Meeting: Instrumentation and Measurement Issues When Estimating National and State Prevalence of Childhood SED, November 12, 2014, Gaithersburg, MD [meeting notes]. Rockville, MD: Author.
BOX 1-1
Statement of Task
A steering committee will organize a public workshop that will feature invited presentations and discussions on options for expanding SAMHSA’s behavioral health data collections to include measures of serious emotional disturbance in children. The discussion will explore new measures and efficient mechanisms for collecting the data. Possibilities include adding new measures to existing surveys, initiating new data collections, or implementing model-based estimation procedures that take advantage of existing data sources, in the event that primary data collection methods are cost-prohibitive or not necessary. Survey and questionnaire design tradeoffs, as well as the potential impact of any changes to existing surveys, will also be discussed. An individually authored summary of the presentations and discussions at the workshop will be prepared by a designated rapporteur in accordance with institutional guidelines.
Russell clarified that there is no specific budget amount allocated for producing data on child serious emotional disturbance, but the workshop participants should consider cost implications.
The specific statement of task for the workshop (shown in Box 1-1) was developed on the basis of the charge for the overall project: to expand behavioral health data collections on several topics. The main goals of the workshop were to discuss options for collecting data and producing estimates on serious emotional disturbance in children, including consideration of the available measures and possible data collection mechanisms.
This summary describes the workshop presentations and the discussions that followed each topic: see the workshop agenda in Appendix A. Chapter 2 provides an overview of existing measures and data on child serious emotional disturbance, including discussions of measuring mental disorders and measuring functional impairment, the two components of the definition of serious emotional disturbance in children. The chapter includes an overview of approaches used in previous studies to estimate the prevalence of mental disorders in the United States; a discussion of the role of measuring impairment as part of efforts to measure serious emotional disturbance in children, along with measures that may be particularly suitable to meet SAMHSA’s goals; an overview of ongoing
federal surveillance systems that collect data on child mental health; and an update on trends in mental health impairment among children, based on data from a national survey.
Chapter 3 presents international perspectives on collecting data on child serious emotional disturbance. Researchers in other countries, including Canada, Australia, and the United Kingdom, have been grappling with some of the same challenges as researchers in the United States, and their experiences contributed additional points of view to the discussion.
Chapter 4 includes presentations on study design and estimation options and challenges to inform a discussion about implementation options. It covers the design of the National Survey of Children’s Health and lessons learned from that survey; design and estimation considerations in multiphase studies; pilot studies conducted on behalf of SAMHSA to produce prevalence rates of child serious emotional disturbance and of adult serious mental illness, using model-based estimation; and a project that used small-area estimation to produce prevalence rates of serious emotional disturbance in children from school-based samples.
Chapter 5 summarizes the discussions throughout the day, which occurred primarily during two formal discussion sessions, one after the morning presentations and the other one after the afternoon presentations.
This report has been prepared by the workshop rapporteur as a factual summary of what occurred at the workshop. The steering committee’s role was limited to planning and convening the workshop. The views contained in the report are those of individual workshop participants and do not necessarily represent the views of all workshop participants, the steering committee, or the National Academies of Sciences, Engineering, and Medicine.
