Family and Caregiver Schizophrenia Discussion Forum

Higher death rate among youth with first episode psychosis - NIMH Report

Sad news to be aware of, and to motivate people to advocate for early treatment programs in your area:

A new study shows that young people experiencing first episode psychosis have a much higher death rate than previously thought. Researchers analyzed data on approximately 5,000 individuals aged 16-30 with commercial health insurance who had received a new psychosis diagnosis, and followed them for the next 12 months. They found that the group had a mortality rate at least 24 times greater than the same age group in the general population, in the 12 months after the initial psychosis diagnosis. This study, funded by the National Institute of Mental Health (NIMH), part of the National Institutes of Health, underscores that young people experiencing psychosis warrant intensive and proactive treatments, services and supports.

The research, led by Michael Schoenbaum, Ph.D., Senior Advisor for Mental Health Services, Epidemiology, and Economics at NIMH, was published online today by Schizophrenia Bulletin.

The research team used insurance claims data to identify young people aged 16-30 who had been diagnosed with a first episode of psychosis in 2008-2009. They used data from the Social Security Administration to identify deaths in this population within 12 months of the initial psychosis diagnosis. Data on cause or manner of death were not available for this research. The 12-month mortality rate for these young people — from any cause — was at least 24 times higher than their peers in the general population. In the general United States population, only individuals over age 70 come close to a similar 12-month mortality rate.

Using the most conservative assumptions, the researchers calculated an all-cause death rate of 1,968 per 100,000 of the cohort, a rate seen only in people aged 70 and over in the general population. In addition, 62% of the cohort had at least one hospitalization and/or one emergency department visit during the initial year of care; 61% did not fill any antipsychotic prescriptions; and 41% did not receive psychotherapy.

Full story here:

Research Paper Here:

Do you have any data on whether treatment produces a significant improvement on mortality rates?

For some reason, the whole PubMed article went up instead of a link. I was going to quote, " antipsychotic use decreased all-cause mortality compared to no antipsychotic use in patients with schizophrenia, and that clozapine had the most beneficial profile in this regard (Tiihonen et al., 2009)"

This research has been replicated elsewhere. Anti-psychotics and anti-depressants are linked to lower mortality. Benzodiazepines are linked to higher. In patients with schizophrenia, “Antipsychotics and antidepressants were associated with an approximately 15% to 40% reduction in overall mortality.”

Thank you. I have heard there is an improvement in mortality but haven’t found an actual percentage improvement.

There would be so many factors to take into account including any improvement from just having more people around a diagnosed/medicated person which may prevent the suicidal thought processes taking hold and would be completely separate from the medication. Likewise, any intervention in recreational drug use of a diagnosed person that would otherwise end in overdose death is a factor separate from the medication. There would also be factors associated with longer-term negative health impacts from medication that lead to early death such as obesity, poor sleeping patterns and sedentary lifestyle if all mortality is included.

I wonder if overall there is really no strong connection between death rates with/without medication when all of the factors are considered.

For young people, there is a mortality rate four times lower with APs

So, four times would be about 400% improvement statistically speaking. Both the OP and this paragraph of the article linked are about young people, people aged 16 - 30 experiencing first episode psychosis in the OP.

And from the OP, the people who died received less treatment: “Overall, 61 percent of them did not receive any antipsychotic medications, and 41 percent did not receive any psychotherapy. Those who died within 12 months of diagnosis received even less outpatient treatment and relied more heavily on hospital and emergency care.”

Not to mention that this survey misses all the young people with FEP who either did not have commercial insurance or did not make it to a hospital or doctor for treatment.


These are some of the factors which make me question whether ap meds on their own are the direct cause of any improvement. My own experience so far is that the system (here, at least) is not set up to cope with sz behaviors and it really comes down to how well the person is supported by their family, or really how much they are willing to stand up and force the system to work for their relative. A lot of patients aren’t lucky enough to have supportive families and I’d imagine this is a contributing factor in why mortality rates are higher with unmedicated patients. Maybe having a supportive family is also a large contributing factor.

As you say, the article linked doesn’t necessarily represent the entire population. The statistic would no doubt look even better if it were possible to include all the unmedicated cases. Overall a significant decrease in mortality for young people when on medication is a definitely good thing, I just can’t help think that there is more to the statistic than the medication alone, simply because there are so many other contributing factors.

My son did not have any treatment on his first break - it was fast. I don’t mind sharing the story if anyone’s interested, but I’ve posted about it before. Basically, all anyone talked about was drugs, no one educated me about psychosis, and there was no bed - so I brought him home, and he got better.

18 months later, he did it again - it lasted a little longer, and it was a little worse. This time, he started seeing a psychiatrist and was still not put on AP’s because the dr didn’t witness it & he had once again recovered. He was anxious & depressed, but not psychotic.

9 months later, he had another one. We still didn’t hospitalize, but they started AP’s.
Trust me - they make a difference. Maybe not for everyone, but they pulled my son back from a very dark place, where he may have killed himself, fairly quickly. And, they kept him from having another psychotic break from the age of 18 until he was nearly 27 - that’s a very long time without a full relapse, especially considering his cycles were increasing in speed.

I regret that we didn’t hospitalize him the first time so that he would have gotten the appropriate treatment earlier. Maybe, if we had, he would have been one of the people who recover completely.

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