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Understanding Psychosis and Schizophrenia Royal Edinburgh

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Offers evidence that group of UK clinical psychologists offer misinformation to persons seeking information about services for serious mental problems.

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Understanding Psychosis and Schizophrenia Royal Edinburgh

  1. 1. BPS’s Understanding psychosis and schizophrenia - a skeptic's perspective James C. Coyne, Ph.D. 2015 Carnegie Centenary Visiting Professor, Stirling July 22, 2015 @CoyneoftheRealm
  2. 2. Special thanks to my PhD student and the Go-to’s Nick Brown and James Heathers Stuart Richie Mike Miller Daniel Laken Neuroskeptic Keith Laws Marcus Munafo Barney Carroll Skeptical Cat
  3. 3. My days as a psychotherapy workshop presenter.  I trained for 6 years at the Palo Alto Mental Research Institute (MRI) with one-way mirrors and live supervision.  Our brief strategic therapy was basis of de Shazer’s solution-focused therapy and influenced acceptance and commitment therapy (ACT).  I abandoned doing workshops when I recognized that I did not have resources to undertake outcome studies.
  4. 4. But then I became skeptical –  Poor quality of the data being used to label treatments as "evidence-based."  Strong evidence that investigator allegiance was a better predictor of the outcome of the trial than which psychotherapy was being evaluated.  Spin: Many results molded to favor investigators’ dogs in the fight.
  5. 5. Evidence based is… “Evidence-based” is too often an ill-gotten branding based on weak evidence generated by promoters of treatments who want us to ignore their conflicts of interest.
  6. 6. I took to social media…. Blogging Twitter @CoyneoftheReam: Irreverent socially conscious Clinical Health Psychologist skeptical about hype and hokum in psychology, other science and medicine and media representations.
  7. 7. My message Don’t abandon the evidence- based treatment movement, but join me in applying its principles in ways that promoters of particular treatments don’t want you to.
  8. 8. The blog of NIMH Director Tom Insel was fair game
  9. 9. Then a Lancet CBT for Psychosis article and the British Psychological Association’s Understanding Psychosis and Schizophrenia came onto my radar.
  10. 10. Must we talk about people behind their backs? I made repeated offers of an independently judged wager with the Lancet CBTp authors and repeated offers to debate publicly with authors of Understanding Psychosis. All offers were refused.
  11. 11. Prof Tony Morrison, director of the psychosis research unit at Greater Manchester West Mental Health Foundation Trust, said: "We found cognitive behavioural therapy did reduce symptoms and it also improved personal and social function and we demonstrated very comprehensively it is a safe and effective therapy.“ It worked in 46% of patients, approximately the same as for antipsychotics - although a head-to-head study directly comparing the two therapies has not been made.
  12. 12. A skeptical look at the Lancet CBT study  The study retained fewer participants receiving cognitive therapy at the end of the study than authors.  The comparison treatment was ill-defined, but for some patients meant no treatment because kicked out of routine care for refusing medication.  A substantial proportion of patients assigned to cognitive therapy began taking antipsychotic medication by the end of the study.  There was no evidence that the response to cognitive therapy was comparable to that achieved with antipsychotic medication alone in clinical trials.  No evidence that less intensive, nonspecific supportive therapy would have achieved the same results as CBT.
  13. 13. Persistent problems of CBTp research Studies are too underpowered and retain too few patients to provide reliable effect sizes. Avoidance of even minimally active control conditions like befriending that would allow determining specificity of CBTp. Lack of equipoise for any CBTp v Medication comparison.
  14. 14.  31 papers described 20 trials.  Trials often small and low quality.  When CBT was compared with other psychosocial therapies, neither relapse nor rehospitalisation reduced.  Global mental state measures found no differences.  “Trial-based evidence suggests no clear and convincing advantage for CBT over other - and sometime much less sophisticated - therapies for people with schizophrenia.”
  15. 15. “Currently there is no literature available to compare brief with standard CBTp for people with schizophrenia. We cannot, therefore, conclude whether brief CBTp is as effective, less effective or even more effective than standard courses of the same therapy. This lack of evidence for brief CBTp has serious implications for research and practice. Well planned, conducted and reported randomised trials are indicated.”
  16. 16. “In our view CG178 promotes some psychosocial interventions, especially CBT, beyond the evidence. CG178 also make some strong recommendations based on no evidence at all, for instance that the dose of CBT should be at least 16 planned sessions.”
  17. 17. Shrinking Effect- CBT for symptoms of psychosis From 50%+ down to <5% showing benefit - From Keith Laws
  18. 18. The largest ever trial of CBTp has gone missing 20 sessions with 165 participants receiving CBT and 165 participants receiving ST.
  19. 19. Tarrier…Kinderman, Kingdon et al 2004 “After clearly demonstrating no superior effect for CBT over Supportive Counselling on measures of symptom reduction or relapse rates – the authors conclude their paper by stating – “We suggest the optimum psychosocial management of early schizophrenia would include a combination of CBT and family intervention”. Would it be rude to suggest that the authors take into account their own findings before making such a statement?” - Alex Mitchell
  20. 20. CBTp uber alles? “Other forms of therapy can also be helpful, but so far it is CBTp that has been most intensively researched. There have now been several meta- analyses (studies using a statistical technique that allows findings from various trials to be averaged out) looking at its effectiveness. Although they each yield slightly different estimates, there is general consensus that on average, people gain around as much benefit from CBT as they do from taking psychiatric medication.”
  21. 21. Imagine that, after feeling unwell for a while, you visit your GP. “Ah,” says the doctor decisively, “what you need is medication X. It’s often pretty effective, though there can be side-effects. You may gain weight. Or feel drowsy. And you may develop tremors reminiscent of Parkinson’s disease.” Warily, you glance at the prescription on the doctor’s desk, but she hasn’t finished. “Some patients find that sex becomes a problem. Diabetes and heart problems are a risk. And in the long term the drug may actually shrink your brain.” - Daniel and Jason Freeman
  22. 22. “A study published today has confirmed a link between antipsychotic medication and a slight, but measureable, decrease in brain volume in patients with schizophrenia. For the first time, researchers have been able to examine whether this decrease is harmful for patients’ cognitive function and symptoms, and noted that over a nine year follow-up, this decrease did not appear to have any effect.” Not RCT, probably confounding by indication.
  23. 23. Readers advisory Despite The Guardian having won the Pulitzer Prize for science reporting, readers may find stories about mental health that are seriously misleading and of little use in making choices about mental health problems and treatments. Information about these issues are not responsibly vetted or fact checked.
  24. 24. Understanding psychosis “The report is intended as a resource for people who work in mental health services, people who use them and their friends and relatives, to help ensure that their conversations are as well informed and as useful as possible. It also contains vital information for those responsible for commissioning and designing both services and professional training, as well as for journalists and policy-makers”. . 
  25. 25. To be trustworthy, such recommendations should  Be based on a systematic review of the existing evidence.  Be developed by a knowledgeable, multidisciplinary panel of experts and representatives from key affected groups.  Be based on an explicit and transparent process that minimizes distortions, biases, and conflicts of interest.  Provide a clear explanation of the logical relationships between alternative care options and health outcomes, and provide ratings of both the quality of evidence and the strength of the recommendations.  Be reconsidered and revised as appropriate when important new evidence warrants modifications of recommendations.
  26. 26. A needed paradigm shift?  “Diagnostic systems in psychiatry have always been criticized for their poor reliability, validity, utility, epistemology and humanity.”  “The poor validity of psychiatric diagnoses—their inability to map onto any entity discernable in the real world—is demonstrated by their failure to predict course or indicate which treatment options are beneficial, and by the fact that they do not map neatly onto biological findings, which are often nonspecific and cross diagnostic boundaries.” - Peter Kinderman, author Understanding Psychosis, President-elect, BPS
  27. 27. From diagnosis to distress We are on a “cusp of a major paradigm shift in our thinking about psychiatric disorders.” Rethink “disorder” in terms of “normal, not abnormal, part of human life.”
  28. 28. Drowning readers in ‘feel-good generalities’ and anecdata…
  29. 29. The “service users” of Understanding Psychosis  5 men and 7 women recruited through local NHS services, community advertisement and branch of the Hearing Voices Network (Jackson, 2011).  Results of anonymous internet survey inquiring about ‘everyday worries about others’ (Freeman, 2005).  Interviews with 12 persons, who reported “psychotic-like ‘out-of-the-ordinary’ experience (OOE) in the past five years” (Heriot-Maitland, 2012).
  30. 30. Service users that Understanding Psychosis marginalizes Many patients with acute and chronic psychosis are essentially nonverbal and cannot communicate their distress. They can’t provide coherent quotes for the psychologists who assembled Understanding Psychosis, but it is irresponsible for those psychologists to pretend these people don’t exist or that the quotes they assembled represent their best interest. Many patients who meet criteria for schizophrenia will times be unable to take care of themselves or to make basic decisions. The burden of caring and decision-making will fall on family members if they are available. The alternative for persons with schizophrenia is to become homeless or go to jail or prisons because more appropriate beds and hospitals are not available.
  31. 31. Psychotherapists'YAVIS Bias Schofield, W. (1964). Psychotherapy: The Purchase of Friendship. Young, Attractive, Verbal, Intelligent Success patients.
  32. 32. Domesticating psychosis?* “Many people do not come into contact with mental health services because they do not find their experiences distressing. For example, many people hear voices talking to them when there is no one there, but the voices say relatively neutral, pleasant or even helpful things so this is not a problem.” “These [psychotic] experiences are quite common. Up to 10 per cent of people will at some point in their life hear a voice talking to them when there is no-one there.” “Even for those whose experiences are distressing and lead to contact with services, the outlook is much better than is commonly assumed. About half will experience problems on one occasion only and then recover completely.” *Phrase from Bernard Carroll
  33. 33. “There are people who have developed a very positive relationship with the experience of hearing voices, and have managed without any psychiatric treatment or support. They have adopted a theoretical frame of reference (such as parapsychology, reincarnation, metaphysics, the collective unconscious, or the spirituality of a higher consciousness) which connects them with others rather than isolating them: they have found a perspective that offers them a language in which to share their experiences. They enjoy a feeling of acceptance; their own rights are recognised, and they develop a sense of identity which can help them to make constructive use of their experiences for the benefit of themselves and others.”
  34. 34. Confused causality? “Most people who have experienced psychosis want to work, but they are one of the most underemployed groups in the UK: approximately 90 per cent of those in contact with specialist mental health services are unemployed. This is very significant because there is evidence that for many people, finding or getting back to meaningful work or other valued activity can have a greater positive impact than any ‘treatment.”
  35. 35. Do psychologists have duty to protect patients from the harm of treatment? “Whilst many people have good experiences of services and professionals, all treatments bring with them the risk of doing harm as well as good. The negative effects of psychiatric drugs and other aspects of mental health services are well documented. These problems are often under-recognised and understated by professionals, perhaps because they see it as their role to persuade people to engage with services. However, mental health services are unique in that people can be compelled to use them under mental health legislation. This means that those of us who work in services have an ethical responsibility to do all we can to keep people safe from the harm that services can do.”
  36. 36. Do the Understanding Psychosis authors have the UN on their side? “13.5.3 Is forced medication ever justified? Some psychologists take the view that whilst compulsory detention can sometimes be justified in order to keep someone safe, it becoming increasingly hard to justify forced medication. The United Nations Special Rapporteur on Torture and Other Cruel, Inhuman or Degrading Treatment has called for a ban20 on forced psychiatric treatment including drugging, ECT (electro-convulsive therapy), psychosurgery, restraint and seclusion.”
  37. 37. BPS language police “This ‘problem definition, formulation’ approach rather than a ‘diagnosis, treatment’ approach would yield all the benefits of the current approach without its many inadequacies and dangers. It would require all clinicians— doctors, nurses and other professionals—to adopt new ways of thinking. It would also require the rewriting of most standard textbooks in psychopathology (which typically use DSM diagnoses as chapter headings).”
  38. 38. A study in contrasts. Compare… “Even if people continue to hear voices or hold unusual beliefs, they may nevertheless lead very happy and successful lives. Sometimes a tendency to ‘psychosis’ can be associated with particular talents or abilities.” “The majority of people who hear distressing voices or hold beliefs that others consider ‘delusional’ nevertheless function well in their lives.”
  39. 39. To clinical epidemiological data…. 1 in 7 people with schizophrenia meet criteria for recovery, portion has not increased in recent decades. 1 in 10 people with schizophrenia suicide. And…
  40. 40.  Highest overall mortality was observed among patients with no antipsychotic exposure (HR = 6.3, followed by high exposure HR = 5.7, low exposure HR = 4.1 and moderate exposure (HR = 4.0).  High exposure (HR = 8.5), and no exposure (HR = 7.6)were associated with higher cardiovascular mortality than either low exposure (HR = 4.7) or moderate exposure (HR = 5.6).  Highest excess overall mortality was observed among first-episode patients with no antipsychotic use (HR = 9.9).
  41. 41. The misrepresented Wunderink study  Widely claimed by Whitaker and Understanding Psychosis group to show that  Wunderink, 2007 specifies “The discontinuation strategy was carried out by gradual symptom- guided tapering of dosage and discontinuation if feasible.”  There was no protocol for the drug reduction— the doctors just said they would give it a try, and many apparently were resistant to the idea.
  42. 42. Wunderink et al (2007) “RESULTS: Twice as many relapses occurred with the discontinuation strategy [43% vs. 21%, p = .011]. Of patients who received the strategy, approximately 20% were successfully discontinued. Recurrent symptoms caused another approximately 30% to restart antipsychotic treatment, in the remaining patients discontinuation was not feasible at all. There were no advantages of the discontinuation strategy regarding functional outcome.”
  43. 43. Wunderink et al (2013)  DR patients experienced twice the recovery rate of the MT patients (40.4% vs 17.6%).  Better DR recovery rates were related to higher functional remission rates in the DR group but were not related to symptomatic remission rates.  “Of course, only one study indicating advantages of a DR strategy in patients with remitted FEP is not enough evidence in such an important matter”.
  44. 44. Dueling Editorials
  45. 45. Disclosure I was Director of Research at MRI, Palo Alto, during winding down of Soteria and I am greatly skeptical about the results I am now going to present.
  46. 46.  Newly diagnosed 179 DSM-II schizophrenia subjects assigned to the hospital or Soteria and followed for 2 years.  Admission diagnoses converted to DSM-IV schizophrenia and schizophreniform disorder.  Endpoint analysis exhibited small-medium effect size trends favoring experimental treatment.  Soteria treatment resulted in better 2-year outcomes for patients with newly diagnosed schizophrenia spectrum psychoses, particularly for completing subjects and for those with schizophrenia.  Only 58% of Soteria subjects received antipsychotic, only 19% were continuously maintained on antipsychotic medications.
  47. 47. Soteria Treatment involved a small, homelike, intensive, interpersonally focused therapeutic milieu with a nonprofessional staff that expected recovery and related with clients “in ways that do not result in the invalidation of the experience of madness.”
  48. 48. A skeptic looks at the Soteria outcome data Unreliable diagnoses, particularly schizophreniform. Unblinded ratings of outcome. Drift in design during trial (consecutive to randomized subject to space availability). Differential attrition. Starting with abstract, strong confirmation bias in selective reporting.
  49. 49. Understanding psychosis and schizophrenia  Can be interpreted as expressing guild interests in a turf war.  More productive to see it as a source of significant misinformation targeting vulnerable patients and their families making difficult decisions about treatment.
  50. 50. But time to self reflect? Nonetheless, we can ask the extent to which the attention Understanding Psychosis as received reflects on inadequate diagnosis and monitoring, crude use of antipsychotics, and lack of basic support in routine care. These are best remedied by better implementation of existing model, not abandoning it.
  51. 51. Psychosis/schizophrenia is… it’s a hard way to be alive and the patients deserve whatever consistent ongoing benevolent interpersonal help they can rely on [and tolerate]. And it sometimes needs to be without an ending. - 1 Boring Old Man
  52. 52. Thank you Follow me on Twitter @CoyneoftheRealm Blogging at PLOS Mind the Brain

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