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Schizophrenia Patient Outcomes Research Team (PORT):

Call to consumers and families to take charge of system that fails to provide effective treatments and supports

A landmark scientific study by Dr. Anthony Lehman of the University of Maryland School of Medicine, Dr. Donald M. Steinwachs from the Johns Hopkins University School of Hygiene and Public Health, and colleagues drives home the message that there are effective treatments for schizophrenia and that, for the most part, people facing this serious brain disease aren’t getting them. NAMI joined forces with these researchers to publicize these results and to announce its own guide to schizophrenia treatment based on the Schizophrenia PORT, but aimed at consumers and families so that they can advocate on their own behalf.

Treatment works. Access to effective treatment is intolerably inadequate. Consumers and families are central to advocacy for improved treatment and services. Of these facts, NAMI members are well aware.

The Schizophrenia Patient Outcomes Research Team (PORT) study, funded by the National Institute of Mental Health and the Agency for Health Care Policy and Research, was a five-year study to identify treatments and services that have been proven to effectively reduce the symptoms of schizophrenia and improve consumer recovery. Thirty treatment recommendations were culled on topics ranging from antipsychotic medications and the treatment of depression and other co-occurring symptoms to consumer and family education and support, vocational rehabilitation, and assertive community treatment (ACT). These recommendations are a ray of hope—an array of medical treatments and supports that can help most people facing schizophrenia have a real life, a life that is not ruled by unremitting symptoms and medical crises; a life that permits an understanding of the illness, support for the consumer and family both, integration with the community, and achievement of personal goals such as employment.

Dr. Lehman and colleagues went on to examine the actual treatment received by hundreds of individuals with schizophrenia to see if real people are receiving these effective treatments and supports. The results are nothing short of an outrage.

• Only 29.1 percent of people with schizophrenia receive the appropriate dose of antipsychotic medication over the long-term. Nearly one-third of these consumers get overdoses that put them at risk of serious side-effects.

• Fewer than half of people with schizophrenia who suffer symptoms of depression receive antidepressant medication, even though 15 percent of people with schizophrenia go on to commit suicide.

• Only half of those suffering from serious side effects of medication receive appropriate and effective treatment to counteract these problems.

• African Americans are almost twice as likely as Caucasians to be overmedicated with antipsychotic medications and accordingly suffer higher rates of side effects. In addition, African Americans are twice as likely to be denied medication for serious depression.

• Fewer than one in 10 families receives even minimal education and support. Even though the vast majority of families are in regular contact with their relative with schizophrenia and family education and support has been shown to improve clinical outcomes,
• Fewer than one in four consumers with schizophrenia who can benefit from employment services receive any such support, even with 90-plus percent unemployment rates in this population.

• As few as two percent of individuals with schizophrenia receive ACT, which is highly effective in preventing relapse and hospitalization.

Given the misuse of medication, it is hardly surprising that treatment compliance and relapse are such problems in schizophrenia. Furthermore, the virtual absence of education and support for both the consumer and the family all but thwart any real chance for recovery.

The PORT study indicts the healthcare system and providers for failing to change ineffective patterns of care for schizophrenia. Indeed, the persistence of such substandard care in the face of such life-saving and improving advances underscores the need for NAMI members and all who are concerned to improve schizophrenia treatment. To that end, NAMI has translated the PORT treatment recommendations into an easy-to-understand guide outlining the necessary treatments of schizophrenia that science has consistently proven work. These science-based treatment recommendations can empower consumers and families to demand nothing less than the medications and supports that work. We are distributing the NAMI Consumer and Family Guide to Schizophrenia Treatment to all of our affiliates as well as to thousands of providers in the mental health system to make available to their patients and clients and their families.

NAMI’s Consumer and Family Guide to Schizophrenia Treatment builds on efforts to directly involve consumers and family members in changing the healthcare system, much like the Family-to-Family Program and NAMI-CARE and Living With Schizophrenia. The revolution to transform the treatment of schizophrenia with the tools provided by science will require direct involvement of many consumers and families. The chance for recovery is achieved one consumer and family at a time. If we don’t do it, who will?

Consumers and family members who are NAMI members or supporters will receive one copy of the NAMI Consumer and Family Guide to Schizophrenia Treatment in late May or early June. Reprint requests for the original PORT study should be sent to Dr. A. F. Lehman, Department of Psychiatry, University of Maryland School of Medicine, 645 West Redwood St., Baltimore, MD 21201.

Landmark schizophrenia PORT study shows

care for schizophrenia lags behind science

Appropriate and careful use of antipsychotic medication is essential for the treatment of schizophrenia.

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