Patient Outcome Research Team Study on Schizophrenia Offers Grim Indictment

June 1, 1998

A leader of a key mental illness patient advocacy group indirectly but pointedly criticized psychiatrists for the care they give schizophrenics. Laurie Flynn, the executive director of the National Alliance for the Mentally Ill (NAMI), said she was "appalled" by the results of face-to-face interviews with over 700 schizophrenics during a 16-month period. The interviews turned up evidence of under- and overdosing of patients and a failure to get patients into effective community treatment plans.

A leader of a key mental illness patient advocacy group indirectly but pointedly criticized psychiatrists for the care they give schizophrenics. Laurie Flynn, the executive director of the National Alliance for the Mentally Ill (NAMI), said she was "appalled" by the results of face-to-face interviews with over 700 schizophrenics during a 16-month period. The interviews turned up evidence of under- and overdosing of patients and a failure to get patients into effective community treatment plans.

Neither Flynn nor any of the other speakers at the Washington, D.C., press conference on March 24 faulted psychiatrists by name. The blame for the poor care was laid at the doorstep of "clinicians" and "health professionals." But the implication was unmistakable.

The PORT Study

The press conference was called to announce preliminary results of the schizophrenia Patient Outcomes Research Team (PORT) study (Please see related article).

At the press conference, Flynn let fly with both barrels. "It's a disgrace that more than half of the [more than] 2 million Americans suffering from schizophrenia today receive substandard care," she said. NAMI introduced a new consumer guide called the NAMI Consumer and Family Guide to Schizophrenia, which is being sent to schizophrenia patients who, Flynn explained, could now "bring their demands" to clinicians.

Asked if he also was "appalled" at the results of the PORT study, John Eisenberg, M.D., administrator of the U.S. Agency for Health Care Policy and Research (AHCPR), said, "I'll let Laurie take credit for that word." Then he added, "You can be appalled, surprised or shocked. But you will definitely be a person who thinks we need to take action."

The PORT study, which began in 1992 is being run by Anthony Lehman, M.D., director of the Center for Mental Health Services Research at the University of Maryland. He and his team first weeded through 900 scientific studies that had been done on schizophrenia in order to identify treatment that works. The research was then fashioned into what Lehman referred to as a "statement of evidence," which he differentiated from treatment guidelines. The statement of evidence was used as a yardstick in the interviews, the schizophrenia patients.

"We did not take a poll of psychiatrists to see what they think works," he said, appearing to indirectly criticize the American Psychiatric Association's treatment guidelines on schizophrenia.

When asked later to comment on those guidelines, Lehman noted that they comprised a consensus document that included "a lot of expert opinion." He added, "They tend to emphasize treatment provided by psychiatrists."

Lehman went on to note that the act of publishing guidelines doesn't change the practice of medicine. "You have to do more than that," he emphasized.

In a follow-up phone conversation, Lehman said he doubted that the results of the final PORT study will differ from those obtained in the interviews for the earlier 16-month period.

During those interviews, Lehman and his team gauged how close treatment came to the general standards in the PORT scientific survey, which contained sections on medication, psychosocial counseling, family interventions, community continuum of care and other topics.

Lack of Appropriate Dosing

The starkest results from the PORT study had to do with medication. Although most patients received antipsychotic medication, only 29.1% received the appropriate dosage over the long term. About one-third (31.9%) were dosed above the recommended level. A bit more than a third (39.1%) got less than the recommended dosage.

In the follow-up call, Lehman emphasized that overdosage was the real threat. He added that unlike depression patients who often see primary care physicians, schizophrenics see psychiatrists almost exclusively. So the overmedication problem, if there is one, is exclusively the fault of psychiatrists.

But when asked specifically about the 31.9% figure, Lehman admitted that there were reasons why psychiatrists might prescribe more than the recommended acute or maintenance dose. "Some of those patients are appropriately dosed," he admitted, referring to the 31.9% that were reported to have been prescribed medication above the appropriate dosage. "The psychiatrist may have tried a lower dose and the patient did not respond."

Nonetheless, Lehman maintained that 31.9% was still too high a percentage, although he did not know what the "correct" overdosage percentage might be. In his interviews with patients, Lehman and his team did not follow up with patients on suspiciously high dosages of antipsychotics to find out whether their psychiatrist had purposefully prescribed that high level.

Deborah Zarin, M.D., deputy medical director at the APA, said the report was not clear on which drugs patients were taking, but that most of the overdosage problem appeared to involve neuroleptic drugs. Decisions about appropriate dose of medication for schizophrenia, she pointed out, depends on balancing the effectiveness with side effects and patient preferences. "This equation for many patients has been dramatically changed by the availability of some of the new antipsychotics such as risperidone [Risperdal] and olanzapine [Zyprexa]," Zarin explained. "Therefore it is not clear the same nonconformance issues would be found today."

Of course, even when psychiatrists prescribe these new medications, HMO formularies may not stock them. Laurie Flynn referred to this potential roadblock by alluding to a letter written by Sally Richardson, director of the Center for Medicaid and State Operations at the Health Care Financing Administration. The letter went out on Feb. 12, 1998, to state Medicaid directors. It mentioned risperidone, olanzapine and quetiapine (Seroquel). "Although many states and managed care organizations have already adjusted their formularies to recognize these new medications, we realize that the pace of change is uneven and we are providing this information to ensure that all states are aware of the progress that has been made in treating this devastating illness," Richardson wrote.

Rates of Psychotherapy Low

Though it was not emphasized at the press conference, Lehman later acknowledged that the 45% rate of schizophrenics receiving psychotherapy is "very low." The NAMI consumer brochure, based on the PORT evidence, endorses "the right kind of psychotherapy" which should be made available to all schizophrenics and used as a complement to medication. Acceptable goals for psychotherapy include providing information about the illness, managing symptoms and treatment, providing support and helping with problem-solving skills. The NAMI brochure says psychotherapy should never be used to help a patient understand unconscious drives or to get at the psychological roots of the disease. Also in the "no-no" category is family therapy based on the premise that family dysfunction causes schizophrenia.

Lehman guessed that the psychotherapy number is so low because some insurance companies won't pay for it, and some psychotherapists really favor insight-oriented psychotherapy, which is not appropriate for schizophrenics. He said that within the past year, Gerard Hogarty, a social worker in the department of psychiatry at the Western Psychiatric Institute and Clinic at the University of Pittsburgh School of Medicine, has published a "psychological" therapy model of treatment for schizophrenia patients. This has the same kind of promise that cognitive-behavior therapy has for depression patients, Lehman stated.

The APA's Zarin added another possible reason: Some patients do not want counseling. They may not want to get involved in programs such as the PACT (Program for Assertive Community Treatment) either. The PORT study reported that only 2% to 10% of patients participate in those kinds of programs.

But Flynn seemed to blame psychiatrists for those low numbers. "It makes no sense that clinicians are not translating 25 years of documented PACT success into daily practice," she said. "Don't they believe in recovery?"