All the media hubbub surrounding the recent publication of the RAISE study has been somewhat confusing. A sampler of headlines includes; Game Changer? (HuffPo); New Approach Advised to Treat Schizophrenia (New York Times); New York Times Issues Correction on RAISE Study Report; Landmark Study Recommends More Therapy, etc…
What is one to make of all the fanfare and conflicting commentary? One of the central conclusions from the study is that providing personalized medication management, family education, recovery-oriented talk therapy and supported employment and education produced modestly better outcomes than treatment as usual (TAU) in a two-year period. This is not exactly a hold the phone!, stop the presses! kind of revelation. The deflated response from many providers in psychiatric rehabilitation and Recovery model programs has been; “now we know what we already knew.” Connecting with people experiencing psychosis, helping them to find hope and meaningful roles at work, school, and the community is what we’ve been doing for the past 25 years. It’s nice to be validated and to have research dollars focused on non-medical interventions. The Recovery model has long recognized that symptom-reduction and meds alone seldom result in recovery.
The breathless announcements may also provide a sad perspective on the abysmally low bar for treatment-as-usual (TAU) of psychosis in the U.S. It is disgraceful that the predominant treatment for too many people in extreme distress remains meds only. Perhaps the RAISE findings can be seen as an encouraging step away from the entrenched medical model that reduces so much human suffering into diseases that can be successfully medicated away.
If the RAISE study can begin to alleviate some of the pervasive hopelessness and helplessness regarding this “death sentence” of a psychiatric diagnosis, it will be worthwhile. I’m referring to the hopelessness and helplessness among the youth being diagnosed; among their families and the professional staff hired to help them; and amongst the general public. Recently there has been high levels of fear added to this pernicious stigma, due to the exploitive linkage of mass killings and “untreated mental illness.” When you come to the understanding that psychosis is solely a chronic, relapsing brain disease requiring life-long medications with many adverse side-effects – it is tough to remain optimistic. One can speculate that the high drop-out rates encountered in the RAISE study could be partly due to this approach. Informing youth that they have a chronic brain disease is probably not a winning engagement strategy.
There are several studies that raise significant questions about the RAISE emphasis on youth taking neuroleptic medications indefinitely and consenting to long acting injectables (LAI’s). Studies on the long-term outcomes of people who remain on neuroleptics are exceedingly poor. When Martin Harrow conducted a long-term, naturalistic study (2013) of a group of people who remained on anti-psychotics, he found striking contrasts between the group who continued taking them (5% functional recovery) versus those who discontinued or substantially reduced them (40% functional recovery). In a randomized control trial (RCT), Wunderink (2013) reported a 40.4% recovery rate among med discontinuers vs. 17.6% of those who remained on them after seven years. According to a study by Bola (2003), 40% of people diagnosed with psychosis can be successfully treated without the use of anti-psychotics.
The hope of early intervention efforts is to alter the all-too-common trajectory of youth diagnosed with psychosis from entering a life-time of disability and poverty. There appears to be substantial evidence that indicates that the use of neuroleptics may actually hamper recovery in the long term. (When a participating psychiatrist in the RAISE study (Sandra Steingard) asked “when is a good time to try stopping the meds?” the stark answer she reports was “NEVER.”) Based on the available evidence, shouldn’t there be explicit, planned “exit ramps”? Careful tapers off the neuroleptics to evaluate whether they are still needed and helpful? (Abrupt cessation may induce an intense “psychosis rebound”) For instance, the Early Assessment and Support Alliance (EASA) approach to psychosis in Oregon recommends an automatic med discontinuation/re-assessment in young people living in one year.
Before the RAISE model becomes firmly enshrined as the best practice for early intervention psychosis in the U.S. (NIMH reports already taking steps to implement RAISE elements) a deeper, longer-term analysis seems in order. The RAISE study will continue for an additional three years, and this would be a crucial variable to investigate further in the coming years. Slowing the rush to premature adoption appears warranted. Researching and reporting on other promising practices, such as EASA and Open Dialogue, should also be supported.
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- Bola, J., Lehtinen, K., Cullberg, J., & Ciompi, L. (n.d.). Psychosocial treatment, antipsychotic postponement, and low‐dose medication strategies in first‐episode psychosis: A review of the literature. Psychosis, Feb 2009; 1(1) 4-18.
- Bola, J., & Mosher, L. (n.d.). Treatment of Acute Psychosis Without Neuroleptics: Two-Year Outcomes From the Soteria Project. The Journal of Nervous and Mental Disease, 191(4) 219-229.
- Harrow, M., & Jobe, T. (2013). Does Long-Term Treatment of Schizophrenia With Antipsychotic Medications Facilitate Recovery? Schizophrenia Bulletin, 962-965.
- The Recovery After an Initial Schizophrenia Episode (RAISE) Study: Notes from the Trenches. MadinAmerica.com, Nov 4 2015; Retrieved November 9, 2015.
- Wunderink, L., Nieboer, R., Wiersma, D., Sytema, S., & Nienhuis, F. Recovery In Remitted First-Episode Psychosis At 7 Years Of Follow-Up Of An Early Dose Reduction/discontinuation Or Maintenance Treatment Strategy. JAMA Psychiatry. Sep 2013; 70(9) 913-20
- Wunderink, L., & Sytema, S. Early Medication Discontinuation on Long-term Recovery Outcome in First-Episode Psychosis—Reply. JAMA Psychiatry, Feb 2014; 71(2) 208-9