Tuesday, July 21, 2020

Measurement of Outcomes in Psychotherapy of Personality Disorders Ignores Social Context

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!

Sense of belonging was tracked with the  PROMIS Short Form v2.0 - Social Isolation 4aSample 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 VersionSample 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.