Early care for psychosis catches on, raises questions

Kim Painter | Special for USA TODAY

For years, Lisa Halpern says she was able to explain away and conceal the early warning signs of psychosis. When she hid in her college dorm room, with towels stuffed under the door and black paper over the peephole, she was just "antisocial." Later, when she was a Harvard graduate student who became unable to read, shower or leave her apartment, she thought she might have a brain tumor.

She didn't tell the neurologist who scanned her brain — and found no tumor — that she was also hearing voices.

Halpern says it took at least six years to get the right diagnosis: schizophrenia. While her story is ultimately hopeful — at age 40, she is doing well with the help of her family, her therapist and medication — it does illustrate a problem: The early stages of psychosis often go unnoticed, are mistreated or not treated at all.

But that may be changing, even as experts debate exactly who needs help and what kind of help to provide.

"There is now a national movement to think about intervening earlier to get better outcomes," says Kenneth Duckworth, a Harvard University psychiatrist and medical director of the National Alliance on Mental Illness.

The hope is to lessen the impact of psychosis — a loss of contact with reality that can be a passing event or part of a lifelong mental illness such as schizophrenia or bipolar disorder. People with psychosis have hallucinations, such as hearing voices; they also suffer from delusions — false beliefs, fears and suspicions. Research shows that the longer psychosis goes untreated, the harder it is to control.

Approximately 100,000 adolescents and young adults in the USA experience a first episode of psychosis every year, according to the National Institute of Mental Health.

"Our best bet to limit the effects of the illness is to identify people early," says Jeffrey Lieberman, a psychiatrist at Columbia University in New York and president of the American Psychiatric Association.

Among new or growing efforts:

• In a first-of-its-kind program, New York City hospitals may soon start contacting the city's health department when anyone ages 18 to 30 is admitted for a first episode of psychosis. The department hopes to send counselors to visit patients and link them with outpatient services, says Adam Karpati, deputy commissioner of mental hygiene. The city board of health will vote on the proposal in December.

• In a few clinics around the country, researchers have been developing comprehensive "first episode" programs. The clinics offer not only medication, but psychotherapy, peer support groups, family support and coaching to help patients return to or stay in school and work after a first psychotic episode. Now, some state and federal agencies are showing interest in funding such clinics on a larger scale, Lieberman says: "This is ready for prime time."

• In other clinics, research teams are working with teens and young adults who have not had full psychotic episodes, but who have had passing or mild symptoms along with other warning signs, such as withdrawal from friends and family, failure at school or work and difficulties thinking clearly. Researchers are trying to find out which young people go on to develop psychotic illnesses and whether any treatments help prevent them.

There are questions about all of these approaches. For example, in New York City, patients are sure to have privacy concerns when hospitals share their names with the health department. So part of the proposed program is to discard names after 30 days, whether patients sign up for ongoing treatment or not, Karpati says.

Right now, there also are not enough clinics or trained mental health workers to offer comprehensive early care to all, Lieberman says. That's part of a larger problem: the inadequate capacity of the mental health system, despite expanded insurance coverage required by new federal rules and the health care law. Some mental health advocates also worry that a new emphasis on early treatment will divert resources from patients with more advanced illness.

Then there's the question of how well early treatment works. Psychiatrists know they see the best short-term results when they treat patients soon after the onset of psychosis. But studies have not yet shown whether early treatment, with anti-psychotic medications and other measures, changes the lifelong course of psychotic illnesses, Lieberman says. Still, he adds, "my theoretical bias is that I can't believe it won't translate into long-term results."

But the greatest uncertainly surrounds the programs for young people who have not had a full psychotic episode. So-called "attenuated psychosis syndrome" or "psychosis risk syndrome" was kept out of the latest revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM) amid fears that many young people would get stigmatizing labels and unneeded anti-psychotic medications.

There's good reason to remain skeptical of such labels, says Allen Frances, emeritus professor of psychiatry at Duke University, Durham, N.C. "Even in the best programs, only 30% to 35% of kids who are identified to be at high risk for psychosis actually go on to become psychotic," he says. He adds that the programs have a legitimate research purpose but have not shown they can identify the highest-risk patients or prevent psychosis.

"It is unwise and premature to invest substantial resources in unproven prevention programs when we so desperately need the money to provide treatment of proven efficacy to those who clearly need it," he says.

But patients at high-risk clinics "are people who are having troubles," are seeking help and do need care, says says Suzannah Zimmet, a Harvard psychiatrist who is medical director of CEDAR, the Center for Early Detection, Assessment & Response to Risks in Boston. After careful evaluation, some who clearly are experiencing brief or subtle hallucinations and delusions do get anti-psychotic medications — which carry risks such as weight gain and high cholesterol — she says. But, she says, patients also get talk therapy and help to manage stress, relationships, work and school. The Boston clinic also is among those testing fish oil supplements, which have shown promise for preventing psychosis in one small study.

"It's an exciting time for those of us who trained in an era when we saw a lot of people with serious mental illness who didn't get treatment for years," says Gloria Reeves, a psychiatrist at the University of Maryland, where a new center combining early treatment and prevention is being launched, with funding from a state anti-violence initiative.

While some of new urgency around psychosis is linked to concerns about the few patients who become violent, "the No. 1 goal is to get people back to healthy, structured daily lives," Reeves says.

Despite her long road to diagnosis, Halpern says that is exactly what she has accomplished. Today, she is director of recovery services at Vinfen, a Cambridge, Mass., non-profit agency that assists people with mental illnesses and disabilities. But she says too many young people in trouble still go unnoticed for far too long.

"Unlike with AIDS and cancer and heart disease, we still wait too often for the disease to become full blown," she says. "With heart disease, we don't wait for a heart attack to do something."