Millions With Schizophrenia Not Getting Basic Treatment, Landmark Study Shows Care Lags Far Behind Science

NAMI Empowers Consumers, Families to Take Control of Care by Putting First-of-its-kind Treatment Guide Directly in Their Hands

Mar 24 1998

Arlington, VA - In response to the alarming results of a landmark study which reveals that more than half of individuals with schizophrenia receive inadequate care, the National Alliance for the Mentally Ill (NAMI) today released new treatment guidelines for this vulnerable population. Designed to help consumers and their families become more skillful partners in treatment decisions, theNAMI Consumer and Family Guide to Schizophrenia Treatment is being widely distributed to consumers, families and healthcare providers around the country.

The Schizophrenia Patient Outcomes Research Team (PORT) Treatment Recommendations and the results of a corresponding study of actual patient care, both published in the latest issue of Schizophrenia Bulletin, underscore the need for greater efforts to ensure that treatment research findings are translated into clinical practice.

"It's a disgrace that more than half of the two-plus million Americans suffering from schizophrenia today receive substandard care," said NAMI Executive Director Laurie Flynn. "Sadly, this report comes as no surprise to thousands of families coping with this disorder. It merely confirms an abysmal level of care that far too many experience first-hand.

"Given what science has taught us about brain disorders and the remarkable schizophrenia treatments now available, individuals with this devastating illness have an unprecedented chance at real recovery today," said Flynn. "It's inexcusable for healthcare providers to ignore these life-improving advances.

"The NAMI guide empowers people to push for the treatments and services that have been shown to work," said Flynn. "It's a much-needed tool for recovery, and we want it in the hands of every person who needs it."

Schizophrenia Treatment Recommendations

Based on an exhaustive review of current scientific evidence documenting the most effective treatments, a team of more than 15 scientists from three major research centers has developed the first science-based guidelines for schizophrenia treatment: The Schizophrenia Patient Outcomes Research Team (PORT) Treatment Recommendations.

Funded by the National Institute of Mental Health and the Agency for Health Care Policy and Research, the five-year study identifies medical treatments and non-medical services that have been proven to reduce schizophrenia symptoms and improve recovery.

The researchers organized a total of 30 treatment recommendations into seven categories of intervention: (1) antipsychotic medications; (2) additional medications for depression, anxiety or hostility; (3) electroconvulsive therapy; (4) psychological treatments; (5) family interventions; (6) vocational rehabilitation; and (7) assertive community treatment.

Schizophrenia Patient Study

Combining the expertise of the Center for Research on Services for Serious Mental Illness (at Johns Hopkins University and the University of Maryland), the University of Maryland Center for Mental Health Services Research, and the Maryland Psychiatric Research Center (at the University of Maryland), the research team went on to study the actual treatment received by hundreds of individuals with schizophrenia to determine how well their care conformed to the corresponding treatment recommendations.

The researchers found alarming rates of inappropriate dosages of antipsychotic medications; untreated depression; untreated side effects; second-class treatment of African Americans; inadequate family supports; and minimal vocational rehabilitation and community-based treatment programs. 

Overview of key findings:

Inappropriate dosages of antipsychotic medications. While most patients with schizophrenia do receive antipsychotic medication, only 29.1 percent receive the appropriate dosage over the long-term. About one-third (31.9) percent of patients are prescribed above the recommended dosage range and another third (39.1 percent) below range.

Depression not treated. Fewer than half of the patients who also have depression receive antidepressant medication, despite the fact that 15 percent of people with schizophrenia commit suicide.

Untreated side effects. Although the majority of study participants (74.2 percent of inpatients and 79.1 percent of outpatients) reported side effects from their antipsychotic medications, only about half of these (53.9 percent inpatients and 46.1 percent outpatients) receive appropriate treatment to counteract these side effects.

"Outdated prescribing practices is a major contributor to the well-documented problem of relapse," said Laurie Flynn of NAMI. "Many individuals give up hope of ever feeling better and not surprisingly drop out of treatment. Much of the noncompliance and resulting disability might be reduced dramatically, if providers adhered to the PORT medication recommendations."

Second-class treatment of African Americans. African Americans are almost twice as likely to be overmedicated with antipsychotic medications (27.4 percent of minority patients versus 15.9 percent of their Caucasian counterparts), which also corresponds to a higher reported rate of side effects. In addition, African Americans are twice as likely to be denied medication for serious symptoms of depression (29.6 percent versus 47.3 percent of their Caucasian counterparts).

Inadequate family supports. Fewer than 10 percent of families of outpatients with schizophrenia receive education and support, even though the vast majority of families are in regular contact with their relative with schizophrenia and family education has been shown to improve clinical outcomes.

Vocational rehabilitation lacking. Even though 85 to 90 percent of individuals with serious mental illness are unemployed, less than one-fourth (22.6 percent) of those with schizophrenia are involved in any type of employment assistance program.

"Studies have consistently shown that vocational rehabilitation not only leads to significant gains in employment, but may also replace day treatment or partial hospitalization," said Flynn. "Employment assistance is critical for people to regain independence, dignity and purpose."

Minimal community-based treatment. Only between 2 percent and 10 percent of individuals with schizophrenia are participating in assertive community treatment programs even though they are widely known to be highly effective in treating the most severe cases of schizophrenia and in preventing relapse and hospitalization.

The Program for Assertive Community Treatment (PACT) model consists of a team of care providers who provide direct treatment and support to people with schizophrenia where they live, not in a clinical setting. PACT team members make sure medications are being taken, watch out for early signs of worsening symptoms, and help clients with daily tasks, such as grocery shopping, managing money, and scheduling doctor appointments.

"Hospitalizing a person with a serious mental illness costs three to five times as much as providing comprehensive community services," said Flynn. "Many relapses could be prevented by such intervention. It makes no sense that clinicians are not translating 25 years of documented PACT success into daily practice. Don't they believe in recovery?"

New Schizophrenia Treatment Guide for Consumers and Families

Given the pervasive lack of appropriate care, NAMI has translated the PORT treatment recommendations into an easy-to-understand guide outlining the necessary core treatments that science has consistently proven work for people with schizophrenia. The advocacy group is distributing the NAMI Consumer and Family Guide to Schizophrenia Treatment to its 1,140 affiliates nationwide, state and community mental health facilities, mental health providers, hospitals, and managed care companies in all 50 states

"The PORT study indicts our healthcare system for failing to change old and ineffective patterns of care for schizophrenia," said Flynn. "Perhaps the best strategy for improving the lives of people with this debilitating illness is to get these treatment recommendations directly into the hands of consumers and families who will begin to demand no less than what works. While we cannot yet cure schizophrenia, we can give those who suffer from it a real chance for full and productive lives."

With more than 210,000 members, NAMI is the nation's leading organization solely dedicated to improving the lives of persons with severe mental illnesses, including schizophrenia, bipolar disorder (manic-depressive illness), major depression, obsessive-compulsive disorder, and severe anxiety disorders. NAMI has more than 1,140 state and local affiliates in all 50 states, the District of Columbia, Puerto Rico, and Canada. NAMI's efforts focus on support to persons with serious brain disorders and to their families; advocacy for nondiscriminatory and equitable federal, state and private-sector policies; research into the causes, symptoms and treatments for brain disorders; and education to eliminate the pervasive stigma surrounding severe mental illness.