BACKGROUND PAPER
January 2022
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SUMMARY
For the past 20 years, research has consistently estimated that approximately 40% to 50% of all individuals with schizophrenia or bipolar disorder are receiving no treatment for their serious mental illness at any given time. Greater variation in the prevalence of treatment is found when serious mental illness is defined more broadly, treatment is defined by follow-up within more limited time periods, or rates of treatment are reported for specific population subsets (e.g., individuals discharged from inpatient facilities). By all definitions or time parameters, however, at least one-third and up to two-thirds of the population was untreated at any given time.
BACKGROUND
The National Institute of Mental Health (NIMH) estimates that 1.1% of the adult population meets diagnostic criteria for schizophrenia and 2.3% meets criteria for severe bipolar disorder.1 Based upon US Census Bureau population estimates,2 this means there were approximately 2.8 million adults with schizophrenia and 5.9 million adults with severe bipolar disorder in the United States in 2020.
- 40% to 51% untreated – NIMH
The NIMH estimates that 40% of adults with schizophrenia and 51% of individuals with severe bipolar disorder receive no treatment in any one-year period. Based on this treatment prevalence assumption, 4.2 million adults with schizophrenia or bipolar disorder were not being treated on any given day in 2020. - 45% untreated – Centers for Medicare & Medicaid Services (CMS)
In 2016, CMS for the first time released data from the inpatient psychiatric facility quality reporting program for all psychiatric facilities accepting public funds.3 Among the findings: 55% of patients received follow-up care in the month following discharge from the hospital, leaving 45% untreated; 31% received follow-up within seven days, leaving 69% without care in the first week. - 35% untreated – National Survey on Drug Use and Health (NSDUH)
The NSDUH, a survey by the Substance Abuse and Mental Health Services Administration, estimates that 64.5% of individuals with serious mental illness received any mental health services in 2020. This includes 7% of patients who were hospital inpatients during the year and 45.1% who received outpatient mental health services.4 Only 56% of the survey population with serious mental illness received prescription psychiatric medications in 2020. - 41% untreated – Analysis of Medicaid claims for hospitalization with schizophrenia
Mark Olfson, MD, and colleagues at Columbia University Medical Center reanalyzed 2003 national Medicaid claims for 49,239 individuals with schizophrenia who had been hospitalized.5 They found that 41% of the patients received no psychiatric follow-up treatment in the month following discharge from the hospital. The strongest predictors for not receiving follow-up treatment were substance abuse and a history of having received no treatment prior to hospitalization. - 40% untreated – Systematic review of relevant literature
A 2009 review of studies reporting on unmet mental health care for schizophrenia concluded that “approximately 40% of individuals in the community with schizophrenia remain out of care either consistently or for long periods of time while experiencing significant symptoms.”6 - 54% untreated – Analysis of National Comorbidity Survey (NCS)
Using data from the NCS carried out in 1990–1992, the authors reported that 54% of individuals with serious mental illness (broadly defined) had received no treatment in the previous 12 months.7 - 52% untreated – Analysis of pharmacy prescription refill data
Using prescription refill data for 25,000 patients with serious mental illness from a national retail pharmacy chain in 1998—1999, the authors reported that 48% of patients were still refilling antipsychotic medication prescriptions after nine months.8 Medication adherence was higher for prescriptions of clozapine, the most effective medication for psychosis, with 71% refilling prescriptions nine months later. - 42% untreated – Analysis of Epidemiologic Catchment Area (ECA) survey data
An analysis of five-site ECA survey data from 1980–1985 found that 42% of individuals with severe mental illness as defined by the NIMH Advisory Mental Health Council were not being treated.9 - 35% untreated – Analysis of ECA survey data
Another analysis of the 1980–1985 survey data found that 35% of individuals with schizophrenia or bipolar disorder had received no treatment in the previous 12 months.10
REFERENCES
1National Institute of Mental Health. (2016). Bipolar disorder among adults. Retrieved from https://www.nimh.nih.gov/health/statistics/prevalence/bipolar-disorder-among-adults.shtml
2National Institute of Mental Health. (2016). Schizophrenia. Retrieved from https://www.nimh.nih.gov/health/statistics/prevalence/schizophrenia.shtml
3Inpatient psychiatric facility quality measure data –national. (2014). Data file downloaded on April 5, 2017 from https://data.medicare.gov/data?q=inpatient+psychiatric+facility+quality+measure+data
4Substance Abuse and Mental Health Services Administration. (2016). Key substance use and mental health indicators in the United States: Results from the 2015 national survey on drug use and health. Rockville, MD. Retrieved from https://www.samhsa.gov/data/sites/default/files/NSDUH-FFR1-2015Rev1/NSDUH-FFR1-2015Rev1/NSDUH-FFR1- 2015Rev1/NSDUH-National%20Findings-REVISED-2015.pdf
5Olfson, M., Marcus, S.C., Doshi, J.A. (2010). Continuity of care after inpatient discharge of patients with schizophrenia in the Medicaid program: a retrospective longitudinal cohort analysis. Journal of Clinical Psychiatry, 71, 831–838.
6Mojtabai, R., Fochtmann, L., Chang, S.W., Kotov, R., Craig, T.J., Bromet, E. (2009). Unmet need for mental health care in schizophrenia: an overview of literature and new data from a first-admission study. Schizophrenia Bulletin, 35(4), 679-695.
7Kessler, R.C., Berglund, P.A., Bruce, M.L., Koch, J.R., Laska, E.M., Leaf, P.J., Manderscheid, R.W., Rosenheck, R.A., Walters, E.E., Wang, P.S. (2001). The prevalence and correlates of untreated serious mental illness. Health Services Research, 36, 987–1007.
8Vanelli, M., Burstein, P., Cramer, J. (2001). Refill patterns of atypical and conventional antipsychotic medications at a national retail pharmacy chain. Psychiatric Services, 52, 1248–1250.
9Narrow, W.E. (2000). Mental health service use by Americans with severe mental illnesses. Social Psychiatric Epidemiology, 35, 147–155.
10Health care reform for Americans with severe mental illnesses: report of the National Advisory Mental Health Council. (1993). American Journal of Psychiatry, 150, 1447–1465.