People under 30 who have experienced first-time psychosis are 24 times more likely than their peers to be dead within a year.
The first thing the voice said to Dan Laitman was "I can help you with your comedy."
That sounded great to Laitman, who was 15 at the time. In fact the voices (clinically known as auditory hallucinations) seemed normal to him. It wasn't until the voices started setting up odd restrictions that Laitman became concerned. He always needed to keep one palm facing up and one facing down. He imagined sticky trails behind people, and he wasn't allowed to cross those until 30 seconds had passed. He needed to keep his right arm bent at a right angle. The consequences of not following the voices commands were terrifying: "All rules promised that if I didn't follow I would lose my soul," says Laitman, who is now 26.
Laitman's parents, who are doctors, recognized that their son was experiencing psychosis—a condition that involves "a loss of contact with reality." They brought him to a psychologist and at just 16 Laitman was diagnosed with schizophrenia.
"I'm really glad my parents are doctors and they found the best care really quickly," Laitman says. Today he's living on his own in Manhattan and performing in comedy clubs.
Psychosis—under which several specific disorders disorders fall—can include delusions and hallucinations as well as confusion. It can be prompted or exacerbated by drug use and it most often presents for the first time during young adulthood (just think about the backflips hormones are doing during this time).
Laitman was one of the lucky people who got into treatment quickly. Most don't fare as well. A study published earlier this month shows that people aged 16 to 30 who experienced their first episode of psychosis have a staggering mortality rate during the year following diagnosis: A full 24 times higher than their peers.
"We expected to see somewhat elevated mortality. We were shocked to see what we actually found," says Michael Schoenbaum, senior advisor for mental health services, epidemiology, and economics at the National Institutes for Mental Health (NIMH), who led the study. "At our most conservative estimate, 2 percent [of this population] would be dead within a year." That's a mortality rate that is expected for people over 70, he notes.
Many people hear that death rate and assume that suicide is the cause. While untreated psychosis is associated with an increased suicide risk, that alone does not explain the drastic increase in likelihood of death. Schoenbaum says that other causes are cardiovascular issues, respiratory issues, and accidents in general.
"We tend to focus on suicide because it's a frightening and catastrophic event for loved ones," says Mark Olfson, professor of psychiatry at Columbia University Medical Center, who as not involved in the study. "However, there is a high risk of dying from any cause, providing us with evidence of the need for a more aggressive approach to identifying and treating this population."
So we know that early intervention results in better outcomes for patients with psychosis. Yet this study showed that 61 percent of patients did not receive any antipsychotic medications, and 41 percent did not receive any psychotherapy. For Schoenbaum, this indicated a failing in the system of care.
"If you compare [these outcomes] to the clinical practice guidelines for treating patients with psychosis, or findings about what is clinically effective care… what this group got was clearly not enough," he says.
This study looked at people who had commercial insurance; researchers examined their billing records and compared that to mortality data from the social security administration. That in itself suggests a certain privilege—these were patients who had insurance and were able to access care in the medical system.
"I thought this more affluent group might have some protections against early death, and yet we see these very high rates," says Olfson, noting that he would expect mortality to be even higher among young people with state insurance or no insurance at all.
The NIMH has spearheaded a program called RAISE, a coordinated specialty care (CSC) program that encourages aggressive treatment for first-time episodes of psychosis. Participants get education about their illness, family support, medication and psychotherapy. The wrap-around care is designed to keep them engaged with their mental health system.
That is something that Jessica Snell, 24, wishes that she had when she first experienced psychosis at 21. "Going through that for the first time, I had no idea what my brain had just put me though. I didn't know if I was the only one, or if my thoughts were true. It felt too real to believe that medicine would fix it," Snell says. "Having a therapist that knows a lot about the subject walk me through what I was feeling and why would have helped during the first year."
Schoenbaum believes that expanding CSC programs is one way to reduce mortality during the first year after a psychosis diagnosis. "Of course we'd like to have better treatments, but the question for now is how to be more effective with the treatments that we have," he says. "CSC is a better approach for treating these people."
Olfson also points out that there should be more training for primary care doctors to help them spot signs of psychosis. "Most young people get a physical every year, those are opportunities for early assessment," he says.
In addition to suggesting a need for more comprehensive, aggressive treatment for first-time psychosis, the study also shows the need to track mortality outcomes for people with mental illness.
While outcomes are tracked for diseases like cancer and heart disease, there is no system for tracking death rates after a mental health diagnosis, Schoenbaum says. He also speculates that this is because traditionally the medical community may not have realized mental illnesses had such a high mortality rate, and because tracking mortality is expensive and more complex than tracking death from physical ailments.
The disenfranchisement of people with mental illness also plays a role. The current issue of Consumer Reports lists the hospitals with the best outcomes for cardiac patients. However, because mortality is not tracked for mental illness, patients and their families aren't able to make similarly informed choices about care.
"If I were the parent of a patient with psychosis, I sure would want to know that information," Schoenbaum says. "Based on the findings we're reporting, not only is there a clear clinical and human argument for paying attention to survival rates, there's got to be an economic relational as well. We're at the beginning of this kind of conversation."
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