WASHINGTON, DC— Most people with schizophrenia have much the same goals as anyone else: a nice place to live, friends, intimate relationships, a new car, more money. Until recently, however, few psychiatrists have asked them what they want from life.

“The idea that we would need to listen to the goals of people with schizophrenia comes out of an entirely new idea of approaching people with schizophrenia—as people,” said Ronald J. Diamond, MD, a Professor of Psychiatry at the University of Wisconsin, Madison. “Understanding goals becomes very, very important when treating people with a chronic ongoing illness.”

Differences between psychiatrist and patient attitudes toward schizophrenia were highlighted in a national survey that ranked the importance of specific treatment expectations and goals, results of which were presented by the study’s coauthor Dr. Diamond during the American Medical Association’s 23rd Annual Science Reporters Conference.

THE RECOVERY APPROACH

“The survey came out of what we call the ‘recovery approach’ to schizophrenia,” said Dr. Diamond, who is also Medical Director of the Mental Health Center of Dane County and a consultant to the Wisconsin Bureau of Community Mental Health and Substance Abuse in Madison. “If you yourself have had a heart attack or gone through cancer treatment or any other terrible condition, those things will always be part of you. But if I ask you who you are, will you identify yourself as a mother, a father, a journalist, somebody who likes to write poetry? Your illness will not be the thing that takes over all parts of your life. The idea of recovery from schizophrenia is to understand that people with schizophrenia also want a life that’s more than just illness.”

He said this includes changing the treatment model from control—ie, “I as the psychiatrist am doing something to you”—to collaboration. “It has to start with a person’s own goals, which is really what led to this particular survey.” He added that goals are important because “people won’t participate in treatment unless they feel it helps them accomplish what they themselves want, is likely to be effective, and is delivered by someone they trust. Increasingly, in our work with people with schizophrenia over long periods of time, treatment is much more effective if we are trying to sell them what they in fact want to buy.”

DOCTORS VERSUS PATIENTS?

The majority of the 291 psychiatrists (66%) participating in the survey treated outpatients at community mental health centers. Eighty-two percent had been in practice more than 10 years and 52% saw more than 200 patients each month. Average age was 52, and 68% were male. The psychiatrists were recruited from a database provided by Janssen-Cilag Ltd, which provided funding for the study, including an honorarium to psychiatrists completing the survey, Dr. Diamond noted.

The 199 patients participating generally had chronic, stable schizophrenia; 88% were members of Schizophrenics Anonymous self-help support groups affiliated with the National Schizophrenia Foundation. Eighty-three percent had been diagnosed more than five years previously; 70% were receiving treatment at a community mental health center, and 90% were seeing their psychiatrists less than once a month. More than half (54%) were living independently, and 25% were living with family members. Average age was 46; 60% were males.

“Fifty percent were at work, either paid or volunteer; 4% were at school; 75% had not been hospitalized in the last year, all pointing out that people living with this terrible disorder are now doing relatively well with it,” Dr. Diamond said.

In the survey—whose results were also reported at the American Psychiatric Association’s 56th Annual Institute on Psychiatric Services—of the 29 treatment goals psychiatrists and patients were asked to rank using a Likert scale, both groups ranked the top two as (1) “improved overall happiness” and (2) “improved mental health.” Third for both groups was “other,” which for psychiatrists included “[reduced] thoughts of harm to self and others,” “ability to read and write,” “cost,” “compliance,” “exercise,” and “nutrition”; for patients, the third-ranked goals included “take charge of my mental illness,” “health insurance,” and “freedom to drink.” The two groups also similarly rated goals considered least important, including “less dependency on others,” “[fewer] sexual side effects,” and “decreased need to visit psychiatrist or other counselor.”

However, considerable disparity existed between psychiatrists and patients with regard to other treatment goals, with physician ratings consistently higher than patient ratings, according to Dr. Diamond. For example, psychiatrists ranked “reduced need for hospitalization” and “improved ability to perform daily activities” as fourth and fifth; patients ranked these as 22nd and 19th, respectively. “Improved ability to perform daily activities, to dress yourself, to clean your apartment, and to go grocery shopping tended to be more important for the psychiatrist than for the patients.”

Conversely, patients rated “reduction in symptoms” as number 10, whereas psychiatrists ranked it as 26th. “Reduction in symptoms—that is, not hearing voices, not believing things that other people thought were important—in this particular sample was actually more important for the patients,” Dr. Diamond said. “This is the biggest surprise for me, because 10 years ago psychiatrists were focused almost entirely on symptoms.”

Patients ranked “not feeling confused/disorganized, improved ability to think clearly” as fifth; physicians ranked it 18th. Again, this “is something that’s much more important for patients than psychiatrists,” he said. “Improving physical health has become more important for both, but again, it’s something that patients point to much more than we as physicians do,” with patients ranking it seventh and psychiatrists, 12th.

IMMEDIATE GOALS

Also surveyed were treatment goals believed to be achievable with currently available therapies. The top two rankings for psychiatrists and patients were “reduction in symptoms related to your illness, such as hearing voices or hallucinating” and “reduced hospitalization.” Ranked third by patients was “improved mood/reduced irritability.” This differed from psychiatrists’ third ranking, which was “reduced tendency to be suspicious of others”—this was 13th for patients. Similarly, physicians gave a higher ranking than patients to “simple medication routine” and lower rankings than patients to “improved motivation, self-confidence” and “improved social life.”

“In a number of different studies, patients complain about their lack of motivation, lack of ability to initiate things, lack of ability to persist,” Dr. Diamond said. “Families complain about this as one of the most disturbing parts of this schizophrenic illness—what we call secondary or negative symptoms. And in fact, patients in survey after survey point this out as the thing that affects their life the most. You can in fact hold a job if you’re hearing voices; you can’t hold a job if you are not motivated to work, and schizophrenia has, as part of its symptom complex, decreased motivation and persistence.”

DIFFERENCES ON THE COUCH

Psychiatrists were also asked, “How often do your patients with schizophrenia articulate that their treatment goals and expectations are not being met?” Responses were “always” (1%), “never” (1%), “rarely” (11%), “most of the time” (16%), and “sometimes” (71%).

In contrast, patients responded to the question, “How often do you tell your psychiatrist that certain treatment goals/expectations are not met by your current medication?” as follows: “always” (25%), “never” (15%), “rarely” (15%), “most of the time” (16%), and “sometimes” (29%).

“There is a disjunction about what people are telling us and how honest they are, [how] comfortable [they are] being with us,” Dr. Diamond said. “These are things that we need to look at and understand.”

—Debra Hughes

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