Getting ahead of trouble
Early detection of mental illness may keep it from spiraling out of control
Three weeks after beginning his freshman year of college, 18-year-old David started behaving strangely. He made an impromptu trip from his New Hampshire school to his home in Revere, arriving at 3 a.m. His mother immediately noticed that something was wrong.
“David was acting weird,’’ says Norma, 51, who asked that she and her son be identified by first names only. “He was spacing out, he was very disheveled, saying things that weren’t making sense at all. He cried a lot. He was listening to one CD on repeat. I kept asking what went through his mind, but he wouldn’t answer.’’
Doctors determined that David could be in the early stages of a psychotic episode and referred him to Massachusetts General Hospital. There, the First-Episode and Early Psychosis Program is designed to prevent small psychotic episodes from turning into big problems, such as schizophrenia.
It’s tricky to identify the warning signs of mental health problems — there’s no blood test, for instance, that can signal coming distress. But experts are increasingly watchful for children and teens who are displaying subtle signs that their brains might be in trouble.
Traditionally, attention has focused on chronic disease. But “once people have had five hospitalizations the train has sort of left the station,’’ says Dr. Oliver Freudenreich, a psychiatrist who directs the MGH program. “Catching the illness as early as possible means that you probably have an illness that is not as severe, [for which] interventions work better.’’
In recent years, mental health specialists have identified a “psychosis risk syndrome,’’ outlining symptoms that may present themselves long before an official diagnosis of schizophrenia could be made. The youths with this risk condition often have milder versions of schizophrenia’s hallmark hallucinations and delusions, and they typically have some insight into what they’re experiencing. They may say, “ ‘The TV really seemed to be talking to me,’ ’’ says Dr. Larry Seidman, a clinical psychologist at Harvard Medical School. “Then the person will say, ‘No, I know that’s not real, but it seemed to be happening.’ They’re scared by these symptoms. They worry that they’re losing their minds.’’
Only 0.5 percent to 1.5 percent of the general population has schizophrenia, but studies conducted in the late 1990s and early 2000s found that some 40 percent of patients diagnosed with psychosis risk syndrome went on to develop a full-fledged psychotic disorder, such as schizophrenia, within 6 to 12 months.
A handful of clinics around the nation are devoted to working with children and young adults with very early signs of psychosis. At the MGH program, the first line of defense is psychotherapy. Dr. Corinne Cather, a psychologist who treats patients in the program, says the goal of this therapy is to help the young people and their families understand what’s happening to them and provide them with skills to manage their symptoms. She also tries to give them hope.
“Forget everything you know about schizophrenia,’’ Cather says she tells her patients. “We’re really going to think about this as having a potential for recovery.’’
Even if the schizophrenia can’t be prevented, disability may be, says Seidman, who is a program advisor at the Center for Early Detection, Assessment, and Response to Risk, or CEDAR Clinic, in Roxbury. “Maybe we can prevent the catastrophe of being hospitalized, of losing social ties,’’ he says. For example, David will be returning to college this month after a year of twice-weekly therapy sessions, and his MGH caregivers helped him secure disability services at his new school.
Such positive outcomes have prompted some in the field to propose including the psychosis risk syndrome in the upcoming edition of the Diagnostic and Statistical Manual of Mental Disorders, the so-called bible of psychiatry, due out in 2013.
But the suggestion has proven to be controversial, partly because most patients with the syndrome will never develop an official psychotic disorder. Over the last 10 years, the percentage of people who have transitioned from the risk syndrome to full-blown psychosis — the so-called conversion rate — has dropped from 40 percent to 27 percent or even lower, by some accounts.
In some ways, this drop is a sign of the field’s growth. A decade ago, patients who met the criteria for psychosis risk syndrome were relatively severe cases. Today, researchers are more proactive, spreading the word about risk factors and searching for the earliest indications of schizophrenia. The patients who get the risk syndrome diagnosis today may have milder symptoms and be further away from a transition to a full-blown disorder.
“Now we cast a much wider net,’’ Freudenreich says. “We get a whole bunch of people with other problems and they’re wondering if it could be schizophrenia. For most of them it probably won’t be.’’
A downside of diagnosing kids with psychosis risk syndrome is that it could saddle healthy youths with a serious psychiatric label and lead to insurance, employment, and other discrimination. “There’s the whole issue of stigma,’’ Freudenreich says. “Would I want to be labeled as at risk for schizophrenia as a youngster?’’
Then there’s the question of antipsychotic medications. Young patients may be prescribed a low-dose antipsychotic as part of their therapy. These meds can alleviate symptoms, and may even stave off the transition to schizophrenia. In a 2006 randomized trial, patients who received a placebo were 2 1/2 times more likely to develop schizophrenia than those who took an antipsychotic. Patients’ symptoms worsened when the drugs were discontinued, however, so it is unclear whether the meds prevented disease or merely delayed it.
The drugs also come with possible side effects, including substantial weight gain and other associated metabolic problems, such as diabetes. Such risks may be worth it for the patients truly on their way to schizophrenia. But what about for the youths who might never have gone on to develop the disorder?
The issue of false positives is immense, says Freudenreich. “There’s an enormous concern in the US that we are already using a lot of antipsychotics in children,’’ he says.
Use of these drugs is growing. In 1995, 8.6 out of every 1,000 children ages 2 to 18 were on some type of antipsychotic medication. By 2002, that number had risen to 39.4 children out of every 1,000, according to a 2006 study by researchers at Vanderbilt University.
Doctors cannot be sure which patients might benefit from the drugs, presenting patients and parents with a tough choice. “We struggled a lot, a lot,’’ with the decision to use medication, says David’s mother, Norma. Besides the potential side effects, David “didn’t want to take the medication. He felt embarrassed about it.’’
Norma, who works in a mental health crisis center, didn’t want to pass up any option that might help her son. David has gained weight since starting the drugs, but his mother is convinced they made the right decision. “I’ve noticed an improvement,’’ she says, and she’s “very pleased’’ with his progress.
Scientists hope that as they learn more, they will be able to more accurately predict which patients would go on to develop schizophrenia. They already know, for instance, that having a close family member with a history of psychosis increases the risk. And researchers are in hot pursuit of schizophrenia “brain markers,’’ which may ultimately allow doctors to predict who will develop the disorder by taking images of a patient’s brain or measuring the brain’s activity.
“We would love to have these kind of powerful tools,’’ Seidman says.
“But it’s premature.’’
Emily Anthes can be reached at firstname.lastname@example.org