Psychotic episodes are seen increasingly to be "toxic"
experiences that appear to damage brain functioning. "Appear" is the
operational word since it may not be permanent. The medications available
today can't help very much. Delays in treating the first psychotic episode,
subsequent episodes and delays in their treatment, essentially cause
irreparable brain damage, and the individual becomes more disabled, and less
able to enjoy life. They also require increasingly expensive supports and services to live in the community.
theoretical outcomes chart
theoretical outcomes chart
First psychosis programs were once just research projects but are now becoming part of a continuum of services available in Australia, Britain, Scandinavia, and Canada. Australia was first. Early Psychosis - Australia Norway has an interesting early intervention program as well. TIPS Norway. The PEPP program in London, Ontario is one of the more developed in Ontario. Ten years ago I never heard any stories of people recovering from schizophrenia. I am hearing more and more stories of young people with schizophrenia on atypical antipsychotics going back to work full time, getting married, and functioning at a much higher level than people of my generation.
Many people ask "why would you have a special program just for first psychosis?". Adolescents between the ages of 16-25 are a very different population then an older generation of people with a long history of schizophrenia, although the females tend to be older at the first psychosis than the males. The emphasis in London is on the "psychotic episode". In London they don't stress a diagnosis of schizophrenia or bipolar disorder to the patient, which can also be quite difficult to determine at the first psychosis. Adolescents can accept a psychotic episode easier than a permanent disabling disease. With the late intervention that is the usual practice, the adolescent in psychosis has deteriorated to the point that hospitalization is necessary. It is not uncommon to have a couple of police officers escort someone in handcuffs by police car to the emergency of a hospital. If they meet the criteria that individual is then locked on a secure ward involuntarily for observation. If the individual is considered incapable of making a treatment decision a substitute descion maker is appointed, usually a family member and the individual starts treatment whether they agree to it or not, by injections if necessary.
This first involuntary hospitalization becomes an important memory of what mental health services are like. It is definitely not the ideal way to introduce someone to a medical condition they will have to adapt to and manage on their own for possibly the rest of their life. With early intervention the goal is to recruit people in psychosis into treatment before hospitalization is necessary. That way there are no police officers and handcuffs, no involuntary hospitalization and involuntary treatment. Early intervention programs establish networks of referral pathways in the community, even through bus shelter ads and tv commercials. Only half of the patients in the London program have ever been hospitalized in a psychiatric hospital. Referrals come from a variety of sources, teachers, youth workers, parents, family physicians, etc.
Without the trauma of involuntary hospitalization and treatment it is much easier to engage the patient, essentially win their trust. I came across this term first reading up on ACT teams that have replaced long term hospitalization. One team in Toronto focused on the homeless mentally ill. Workers approach these people to help them obtain housing and convince them to take medication. It can take many, many months at that stage of illness because individuals have lost all their human relationships. The process was referred to as "engaging", essentially winning the individual's trust. Family education also helps, by engaging the parents who live with, and care for the individual.
There is little doubt now that early diagnosis and treatment with relapse prevention leads to much better outcomes than previously was the norm, particularly with treatment by atypical medications. How much better is still in doubt. I heard a presentation recently made by a Max Birchwood who pointed out that outcomes at three years are essentially the same as outcomes at 11 years, that is, the first few years of illness are the most critical. Dr. Malla who was the director of the London program told me the first six months of the initial psychotic episode are the most critical. If he can treat someone in the first six months he can get a complete remission of psychotic symptoms 90% of the time. Negative symptoms are less responsive to medication.
The Duration of Untreated Psychosis is called the D.U.P. After six months of DUP the recovery response is slower. Reducing the DUP is essential to an early intervention program. The DUP is often one to two years. The DUI, Duration of Untreated Illness, which includes the prodrome, is that much longer. Individuals often make attempts to get help, from family physicians, emergency wards, distress lines, etc. Many professionals shrug off the difficulties a teenager is having as normal for a teenager, their hormones, their rapid growth. You can't help but wonder why we generally don't take teenagers' troubles seriously. The stigma of mental illness has also meant that very few people know anything about it. Most family members have no idea what is happening when their teenage kid starts behaving bizarrely, although they may have been concerned about them for some time.
A significant percentage (40%) of first psychosis patients have substance abuse problems that interfere with their recovery. This is partly because their social development has led to them to a point where all of their friends are taking drugs recreationally. The experience in London is that marijuana use precipitates a psychotic episode years before one would normally occur, and there is increasing evidence that marijuana use raises the risk of developing schizophrenia. It can literally be the straw that broke the camel's back, causing schizophrenia in people who otherwise wouldn't have developed schizophrenia. No one should smoke marijuana until their prefrontal cortex has matured, i.e. until they are well into their twenties.
Delusions and hallucinations in the early stages of psychosis can be non threatening. Just as John Nash enjoyed the company of his imaginary room mate, people can enjoy feeling part of a special and unique experience. These magical forces are powerful, and individuals may have a strong trust and faith in them and be reluctant to give them up. The delusions and hallucinations make them feel special. Later on as illness progresses, these delusions and hallucinations become very frightening, but at first they may even be seen as desirable. In first psychosis programs success depends on identifying a "problem", on identifying symptoms the individual does find unpleasant and disturbing, symptoms that medication will relieve. The case managers are really the backbone of the London PEPP program. People entering the program attend patient education sessions and activity sessions with other first psychotic episode patients. They are almost always living with their parents who attend multifamily education sessions. This engagement of patients and family is critical to the success of these programs.
You have to minimize the drop out rate by providing services that respond to the interests, and needs of this population, because you have to prevent relapse that will tend to damage brain functioning. It's ideal if you can follow them for the next five years or so. The end result appears to be less disruption in a critical period of an individual's development, less permanent cognitive damage, less severe negative symptoms, and a complete remission of positive symptoms, all of which are probably a result of untreated psychosis and continuing relapses.
If you've read my story you will remember Dr. Weinberger at the 1996 Schizophrenia conference in Vancouver comparing schizophrenia to the TWA flight exploding over the Atlantic. Back in 1996 that was the commonly held expectation for schizophrenia. Something resembling a bomb will completely destroy a person's life. Since then the atypicals have raised the hope that the plane won't explode in late adolescence but the person will land in Siberia instead of Hawaii and will experience some disability. Compliance with medication by people experiencing a first psychosis became much more probable with atypicals, which made the destinations even more bearable, say, Arizona instead of Siberia. Treating someone in the first six months of the first psychosis might mean that people only experience some air turbulence inflight and continue to actually land in Hawaii.
First psychosis programs are becoming the focus of treatment strategies because they appear to have the greatest impact on reducing the disability associated with schizophrenia. Because the atypicals have a very low toxicity it has become possible to even consider preventing the first psychosis altogether by treating people who are at risk of developing schizophrenia. If the atypical is as dangerous as an aspirin, why not take it before the headache hits? There are several studies I know, one in Australia , one in the U.S. and one here in Toronto, that are treating people before a first psychosis. The ethics of such preventative first strike treatment programs are contentious. You need to be able to predict with a fairly high degree of certainty who will develop schizophrenia. Salon magazine has an interesting article on this the ethics of treating before a psychosis. Salon magazine article.
The atypical medications heralded a new era in the treatment of schizophrenia. Their low side effect profile and greater efficacy has revolutionized treatment strategies. Atypicals generally help everyone with schizophrenia, but the first psychosis and preventative programs utilizing atypicals may prevent people from ever becoming "schizophrenics" in the sense that the word is now used. Many people may never actually develop the "schizophrenia" or "bipolar disorder" that we have come to expect. I think it is realistic to hope that next generation with schizophrenia will only ever experience a first psychosis.