(May 16, 2017) The federal government needs to change the way it defines serious mental illness and collects information about people with the most disabling psychiatric diseases, according to a provocative new viewpoint published in the Journal of the American Medical Association.
Focusing more on people affected by diseases such as schizophrenia and bipolar disorder and less on the prevalence of the disorders would produce data to make treatment for this population more person- and family-centered, the authors wrote in "Future surveillance of mental disorders in the United States: Count people, not disorders."
Led by Kathleen R. Merikangas, a senior investigator at the National Institute of Mental Health, the trio of authors said they believe the next generation of mental health statistics should "address the gap in knowledge about the approximately 3% to 5% of people with the greatest impairments and disabilities associated with severe mental disorders."
Shortcomings Found
There is an absence of statistics about schizophrenia and other psychiatric diseases associated with severe impairment compared with the abundant information collected by the Centers for Disease Control and Prevention and other federal agencies about health conditions such as cancer and heart disease and behaviors such as smoking and alcohol use, the authors said.
No US agency is responsible for surveilling serious mental illness in adults or youth, according to the article. Only the Substance Abuse and Mental Health Services Administration (SAMHSA) operates under a mandate to collect any mental illness information at all, but its mandate is limited to determining prevalence estimates for specific diagnoses, such as mood disorders or major depression. This information generally is collected through household or telephone surveys that exclude individuals in hospitals or prisons, "likely resulting in underestimates" of the most severe conditions, the authors said.
Moreover, SAMHSA's mandate operates on definitions established in 1993, before the Diagnostic and Statistical Manual of Mental Disorders was revised twice. It also specifically excludes substance use and developmental disorders in most cases. The exclusions were based on block-grant funding mechanisms, not the clinical reality that these conditions often are comorbid. Trends in psychiatric care - including the shift of treatment from psychiatric facilities such as state hospitals to general medicine, community settings, family caregivers and prisons - may render the exclusions obsolete, in the authors' views. "There is a need to review and update the federal definitions of SMI to implement (SAMHSA's) mission and coordinate this work with other data at the national level."
Recommendations Made
The authors made three recommendations to be addressed in future research:
- Prioritize the assessment of impairments and disabilities associated with serious mental illness rather than merely counting the number of people with a disorder
- Use sampling strategies that include health systems and institutions that have the most contact with individuals with the most severe disorders, such as psychiatric hospitals and corrections facilities
- Include the full range of psychiatric, developmental and substance abuse conditions in the definition of serious mental illness, along with medical conditions and physical disabilities the contribute to impairment and negatively affect outcomes.
The report comes after the 21st Century Cures Act was enacted in late 2016, including specific provisions regarding data collection around serious mental illness, and at a time when SAMHSA for the first time has established a serious mental illness research portfolio and convened an expert panel to advise the agency on what the portfolio should include.
The Treatment Advocacy Center has participated in both these developments and consistently advocated for more and better identification of the role and impact of serious mental illness in a host of individual, family and social circumstances. Our most recent original report, A crisis in search of data: The revolving door of serious mental illness in super utilization, is a case in point.
The report calls for a standardized definition of serious mental illness and shares themes with the JAMA viewpoint. "The role of serious mental illness in high utilization is largely uncharted and its costs unknown and unknowable at the state or federal level from the data currently being collected," A crisis in search of data found. "This dooms policymakers to making critical decisions without essential information. It also severely limits their ability to make decisions based on intersystem costs and benefits."
Doris A. Fuller
Chief of Research and Public Affairs
References:
- Merikangas, K.R. et al. (April 2017). Future surveillance of mental disorders in the United States: Count people, not disorders. Journal of the American Medical Association.
- Fuller, D.A. et al. (April 2017). A crisis in search of data: The revolving door of seriousmental illness in super utilization. Treatment Advocacy Center.
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Research Weekly is a summary published as a public service of the Treatment Advocacy Center and does not necessarily reflect the findings or positions of the organization or its staff. Full access to research summarized may require a fee or paid subscription to the publications.
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