CreditUli Seit for The New York Times
A series profiling people who are functioning normally despite severe mental illness and have chosen to speak out about their struggles.
In 2014, Congress awarded $25 million in block grants to the states to be set aside for early-intervention mental health programs. So far, 32 states have begun using those grants to fund combined-treatment services, Dr. Heinssen said.
Experts said the findings could help set a new standard of care in an area of medicine that many consider woefully inadequate: the management of so-called first episode psychosis, that first break with reality in which patients (usually people in their late teens or early 20s) become afraid and deeply suspicious. The sooner people started the combined treatment after that first episode, the better they did, the study found. The average time between the first episode and receiving medical care — for those who do get it — is currently about a year and half.
The more holistic approach that the study tested is based in part on programs in Australia, Scandinavia and elsewhere that have improved patients’ lives in those countries for decades. This study is the first test of the approach in this country — in the “real world” as researchers described it, meaning delivered through the existing infrastructure, by community mental health centers.
The drugs used to treat schizophrenia, called antipsychotics, work extremely well for some people, eliminating psychosis with few side effects; but most who take them find that their bad effects, whether weight gain, extreme drowsiness, or emotional numbing, are hard to live with. Nearly three quarters of people prescribed medications for the disorder stop taking them within a year and a half, studies find.
“As for medications, I have had every side effect out there, from chills and shakes to lockjaw and lactation,” said a participant in the trial, Maggie, 20, who asked that her last name be omitted. She did well in the trial and is now attending nursing school.
Doctors praised the study results.
“I’m very favorably impressed they were able to pull this study off so successfully, and it clearly shows the importance of early intervention,” said Dr. William T. Carpenter, a professor of psychiatry at the University of Maryland, who was not involved in the study.
Dr. Mary E. Olson, an assistant professor of psychiatry at the University of Massachusetts Medical School, who has worked to promote approaches to psychosis that are less reliant on drugs, said the combined treatment had a lot in common with Open Dialogue, a Finnish program developed in the 1980s. “These are zeitgeist ideas, and I think it’s thrilling that this trial got such good results,” Dr. Olson said.
In the new study, doctors used the medications as part of a package of treatments and worked to keep the doses as low as possible — in some cases 50 percent lower — minimizing their bad effects. The sprawling research team, led by Dr. John M. Kane, chairman of the psychiatry department at Hofstra North Shore-LIJ School of Medicine, randomly assigned 34 community care clinics in 21 states to provide either treatment as usual, or the combined package.
For example, some patients can learn to defuse the voices in their head — depending on the severity of the episode — by ignoring them or talking back. The team recruited 404 people with first-episode psychosis, mostly diagnosed in their late teens or 20s. About half got the combined approach and half received treatment as usual. Clinicians monitored both groups using standardized checklists that rate symptom severity and quality of life, like whether a person is working, and how well he or she is getting along with family members.
The group that started on the combined treatment scored, on average, more poorly on both measures at the beginning of the trial. Over two years, both groups showed steady improvement. But by the end, those who had been in the combined program had more symptom relief, and were functioning better as well. They had also been on drug doses that were 20 percent to 50 percent lower, Dr. Kane said.
“One way to think about it is, if you look at the people who did the best — those we caught earliest after their first episode — their improvement by the end was easily noticeable by friends and family,” Dr. Kane said. The gains for those in typical treatment were apparent to doctors, but much less obvious.
Dr. Kenneth Duckworth, medical director for the National Alliance on Mental Illness, an advocacy group, called the findings “a game-changer for the field” in the way it combines multiple, individualized therapies, suited to the stage of the psychosis.
The study, begun in 2009, almost collapsed under the weight of its ambition. The original proposal called for two parallel trials, each including hundreds of first-episode patients. But recruiting was so slow for one of the trials that it was abandoned, said Dr. Heinssen.
“It’s been a long haul,” Dr. Heinssen added, “but it’s worth noting that it usually takes about 17 years for a new discovery to make it into clinical practice; or that’s the number people throw around. But this process only took seven years.”
Update: The Times has issued a correction to this story. The correction states that the story erroneously claimed that the experimental approach in the study used lower drug dosages. “Though it studied a program intended to reduce medication dosages, the researchers do not yet know for sure if dosages were lowered or by how much,” the correction notes.”Therefore, the study did not conclude ‘that schizophrenia patients who received smaller doses of antipsychotic medication and a bigger emphasis on one-on-one talk therapy and family support made greater strides in recovery.’ (The study did conclude that the alternative treatment program as a whole led to better outcomes.)”
We changed the headline of our review from “Times captures impact of new, less drug-intensive schizophrenia treatment” to “Times explores impact of integrated care model for schizophrenia treatment.” The correction does not affect our ratings for the story, but the references we made in the review to the lowered drug dosages are no longer appropriate and have been stricken. In addition, the tone of the review would have been more circumspect had we known that the intended reduction in drug dosages had not been confirmed by the researchers.
In a large randomized controlled trial in 34 community clinics across the U.S., researchers compared usual care for first episode psychosis with a program of integrated care that included not only drugs, but also help with school and work, family education about the problems and how best to help, as well as one-on-one talk therapy. The government (National Institute of Mental Health)-funded study found that those receiving the integrated program of care experienced more symptom relief and functioned better than those in the treatment-as-usual group.
Their doses of medication were also 20-50% lower. Those receiving treatment earlier on in their psychotic episodes also did better.
The story overall does a solid job of covering the study and its implications. But we wish it had pushed a bit harder to quantify the benefits shown in the 2-year trial with some hard numbers. We applaud the discussion of federal policy and financing, but also wish there had been some discussion of the costs of therapy itself. The inclusion of a variety of perspectives on the research brings depth and nuance to the coverage.
Psychiatric treatment in the U.S. has become very drug focused. Other countries are ahead of us on using more integrated care models like the one described in this story, so it’s great to see its success “proven” with a randomized trial. With solid evidence to back it, this model will hopefully become a more accepted approach to practice in the U.S.
The story does not touch on costs for the more comprehensive treatment — including educating families and providing more counseling for patients. True costs and potential savings would be very hard to quantify, and would accrue over time as people hopefully stay in school and jobs, and have fewer admissions to the hospital etc. Even if the story couldn’t address these issues precisely, some mention of them would have been helpful. We do applaud the story for exploring the political and reimbursement context. This was especially good:
Its [study] findings have already trickled out to government agencies: On Friday, the Centers for Medicare & Medicaid Services published in its influential guidelines a strong endorsement of the combined-therapy approach.Mental health reform bills now being circulated in Congress “mention the study by name,” said Dr. Robert K. Heinssen, the director of services and intervention research at the centers, who oversaw the research.
The story says drug doses were 20-50% lower, which is a very big deal considering the side effects of these drugs. But overall it leaves us hungry for numbers. It says patients in the therapy group, who received more one-on-one talk therapy and family counseling “made greater strides in recovery over the first two years of treatment than patients who got the usual drug-focused care.” But nowhere in the story does it tell us how “strides” were measured or give us a percentage by which they exceeded those for the control group.
It would have taken some additional legwork to find these numbers, which were not reported in plain English in the study itself. But the paper did report some numbers that were very easy to understand and were not mentioned in the story:
“Over the 2 years, 34% of the NAVIGATE group and 37% of the community care group (adjusted for length of exposure) had been hospitalized for psychiatric indications (not significant).”
We wished the story had pressed the study authors more about this.
It’s conceivable that changing the standard of care for patients by reducing drug doses may carry some risk. Could some patients’ symptoms be less-well controlled? Then again, drugs are very much overused in this area. And on average the study showed better symptom relief with the lower doses. No harms were documented in the study–no increase in hospitalizations at least. So while we can’t give credit here, we won’t ding the story either. We’ll rate it Not Applicable.
While we would have liked a few more numbers, the story does explain that the comprehensive study included many clinics nationwide and two years of follow up on 404 patients. Since schizophrenia is a chronic condition, studies going beyond two years would help solidify these results — and the study itself mentioned that the researchers plan to follow patients out to five years. Overall, however, we think the description of the evidence is sufficient to warrant a Satisfactory rating.
There was no disease mongering.
The story quotes experts who were not authors on the study.
There were good explanations of the two alternatives being compared by the research itself — the drug-focused standard and the more comprehensive integrated care.
The story touches on availability when it says, “In 2014, Congress awarded $25 million in block grants to the states to be set aside for early-intervention mental health programs. So far, 32 states have begun using those grants to fund combined-treatment services, Dr. Heinssen said.” That doesn’t provide as much detail as readers might like as to when and where they might find these services, but it gives a general idea of where things stand.
The story makes it clear that this was the most rigorous trial of this particular version of treatment in the United States. It notes that such treatment has been more widely used in Europe.
The story shows original reporting and does not rely on a news release.