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. 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. 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. 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.
5. 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.
6. 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.
7. 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.
8. 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.
9. The blog of NIMH Director
Tom Insel was fair game
10.
11.
12.
13. Then a Lancet CBT for Psychosis
article and the British Psychological
Association’s Understanding Psychosis
and Schizophrenia came onto my
radar.
14. 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.
15. 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.
16. 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.
17. 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.
18. 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.”
19. “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.”
20. “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.”
21. Shrinking Effect- CBT for
symptoms of psychosis
From 50%+ down to <5% showing benefit
- From Keith Laws
22. The largest ever trial of CBTp
has gone missing
20 sessions with 165 participants receiving CBT
and 165 participants receiving ST.
23. 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
24. 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.”
25. 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
26. “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.
27.
28. 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.
29. 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”.
.
30. 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.
31. 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
32. 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.”
34. 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).
35. 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.
37. 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
38. “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.”
39. 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.”
40. 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.”
41. 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.”
42. 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).”
43. 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.”
44. 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…
45. 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).
46. 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.
47. 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.”
48. 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”.
50. 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.
51. 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.
52. 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.”
53. 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.
54. 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.
55.
56.
57. 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.
58. 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
59. Thank you
Follow me on Twitter
@CoyneoftheRealm
Blogging at PLOS Mind the Brain