On June
22, 2020 I received an e-mail from the International Society for the Study of
Personality Disorders (ISSPD), an organization to which I belong, announcing
that a group whose purpose is to define standard outcomes in research on
various medical conditions came up with such a list for outcomes in
psychotherapy for personality disorders.
It read:
BOSTON, Massachusetts, June 2, 2020: The
International Consortium for Health Outcomes Measurement (ICHOM) announced the release of their
Personality Disorders Standard Set today.
Leading
mental health researchers, practitioners, and service user representatives from
across Europe, North America, Asia, and Australia have joined forces to
establish and launch the first international standard for measuring treatment
outcomes for adults and adolescents aged 12 and above with personality
disorders. This marks an important step towards promoting data quality and
availability, and strengthening mental health care for this group.
As my
readers are probably aware of by now, I have been critical of outcome studies
in the field for a number of reasons, not the least of which is the researchers’
obsession with what is going on inside people’s heads while ignoring what it is
they are actually reacting to. The
focus has been entirely on a decrease in symptoms, not on the specific behaviors of self and others
and the resultant difficulties in patients’ relationships
which then lead to the symptoms. The
primary attribution error personified. Did the relationships of subjects
improve or not? We never knew.
Not that
symptom relief isn’t important. It’s difficult to function at all, let alone
focus on difficult issues, in the midst of panic or rage attacks. Self
injurious behavior is also a huge problem. I
put most of my psychotherapy patients who had borderline personality disorder
on meds so these symptoms were controlled in many of them – and, I might
add, much more quickly and effectively than through psychotherapy or mindfulness training. In
fact, the type of therapy I used (Unified
Therapy) can not be done at all without some control of such symptoms,
because the therapy focuses on the anxiety-producing issues with which I think
patients must deal.
However, symptoms
are not at the heart of the disorder. Personality disorders are clearly and
obviously (at least to me) disorders of interpersonal relationships that
include a wide variety of family members and romantic partners. These
relationships involve issues that are
often somewhat unique to each person (the ecological fallacy is widespread in this research). Those are what need to change in order for symptomatic improvement
to last very long. And if any of them have changed after therapy, none of the
changes have been measured in typical psychotherapy outcome research.
So I was
anxious to see if the new data sets announced in ISSPD’s e-mail might include
some of the actual problems which create personality disorder symptoms. Of
course, they did not. The circle that is at the top of this post shows the areas
under consideration and what tests are supposed to be used to measure them.
Here’s a list of the measurements. The numbers refer to the ones in the circle next to the name of each subsection:
The
standard set
The ICHOM Standard Set for Personality Disorders is the result of
hard work by a group of leading psychiatrists, psychologists, mental health
experts, measurement experts, and lived experience experts. It represents the
outcomes that matter most to adults and adolescents with personality disorders.
We urge all providers around the world to start measuring these outcomes to
better understand how to improve the lives of their service users.
1.
Defined by Emotional
Distress/Emotional Pain
2.
Defined by Affective
Lability/Emotional Dysregulation
3.
Defined by
Self-harm/Self-injury
4.
Defined by Overt Aggression
5.
Defined by Global/Daily
Functioning/Disability
6.
Tracked via the Level of
Personality Functioning Scale - Brief Form 2.0
7.
Tracked via the Recovering
Quality of Life - 10-Item Version
8.
Tracked via the
Difficulties in Emotion Regulation Scale - 16-Item Version
9.
Tracked via the Columbia
Suicide Severity Rating Scale - Screener/Recent - Self-Report
10.
Tracked via the Modified
Overt Aggression Scale
11.
Tracked via the WHO
Disability Assessment Schedule 2.0 - 12-Item Version
12.
Tracked via the
KIDSCREEN-10 Index in Adolescent Specialist Services
13.
Tracked via the PROMIS
Short Form v2.0 - Social Isolation 4a
Almost all of these outcomes are to be measured in
terms of how often subjects experienced difficulties during a wide variety of
activities or how often they felt bad, but nothing about whether any changes
had taken place in the subjects’ lives which might account for the reasons
behind any such pre-existing problems. Subjects are asked if they are having difficulties
which such things as getting started with everyday activities or doing things
they found rewarding. They are asked if they can enjoy themselves.
They are asked if they feel lonely or in control
of their lives, but not about why. They are also asked if they feel that the
people around them are causing distress, but absolutely nothing was asked about
what the interpersonal problems creating the distress actually were exactly or whether or not they had been effectively addressed in therapy.
In the circle are three general life areas which I thought might expand the outcome horizon in the desired direction:
Interpersonal and social functioning, sense of belonging, and health related
quality of life. So I looked at the outcome measures ICHOM was recommending.
Once again, the same issues reared their ugly heads.
Interpersonal and social
functioning was tracked via the WHO
Disability Assessment Schedule 2.0 - 12-Item Version. Sample questions: In
the past 30 days, how much difficulty did you have in: learning a new task,
joining in community activities, dealing with people you do not know, maintaining
a friendship, and in your day to day work.
Once again, how much but
nothing about what the specific difficulty involved were and why, and nothing about
family or love relationships.
Gee, and here I was naive enough to think that interpersonal functioning requires the participation of at least two people!
Gee, and here I was naive enough to think that interpersonal functioning requires the participation of at least two people!
Sense of belonging was tracked with the PROMIS Short
Form v2.0 - Social Isolation 4a. Sample questions: How
often have you experienced feeling left out or isolated from others? Again,
nothing about isolated from whom or why or what is
creating any
continuing such problems.
Health related quality of life
was tracked with Recovering Quality of Life - 10-Item Version: Sample
questions: how often did
you have trouble with such things as trusting others, enjoying what you are
doing, feeling confident in oneself. Nothing about which relationships
or even which areas
of life these feelings occurred within, or what was happening
which might have led to these feelings.
Truly, the science here continues to leave much to be desired.