Is Donald Trump suffering from Pick’s Disease (frontotemporal dementia)?

Changing the conversation about Donald Trump’s fitness for office from whether he has a personality disorder to whether he has an organic brain disorder.

mind the brain logoChanging the conversation about Donald Trump’s fitness for office from whether he has a personality disorder to whether he has an organic brain disorder.

Trump.jpgFor a long while there has been an ongoing debate about whether Donald Trump suffers from a personality disorder that might contribute to his being unfit the President of the United States. Psychiatrists have ethical constraints in what they say because of the so-called Goldwater rule, barring them from commenting on the mental health of political figures that they have not personally  interviewed.

I am a clinical psychologist, not a psychiatrist. I feel the need to speak out that the behavior of Donald Trump is abnormal and we should caution against normalizing it. The problem with settling on his behavior being simply that of a bad person or con man is it doesn’t prepare us for just how erratic his behavior can be.

I’ll refrain from making a formal psychiatric diagnosis. I actually think that in clinical practice, a lot of mental health professionals too casually make diagnoses of personality disorders for patients (or privately, even for colleagues) they find difficult or annoying.  If they ever gave these people a structured interview,  I suspect they would be found to fall  below the threshold for any particular personality disorder.

Changing the conversation

But now an article in Stat has changed the conversation to whether Donald Trump suffers from personality disorder to whether he is developing an organic brain disorder.

I’m a brain specialist. I think Trump should be tested for a degenerative brain disease

When President Trump slurred his words during a news conference this week, some Trump watchers speculated that he was having a stroke. I watched the clip and, as a physician who specializes in brain function and disability, I don’t think a stroke was behind the slurred words. But having evaluated the chief executive’s remarkable behavior through my clinical lens for almost a year, I do believe he is displaying signs that could indicate a degenerative brain disorder.

As the president’s demeanor and unusual decisions raise the potential for military conflict in two regions of the world, the questions surrounding his mental competence have become urgent and demand investigation.

And

I see worrisome symptoms that fall into three main categories: problems with language and executive function; problems with social cognition and behavior; and problems with memory, attention, and concentration. None of these are symptoms of being a bad or mean person. Nor do they require spelunking into the depths of his psyche to understand. Instead, they raise concern for a neurocognitive disease process in the same sense that wheezing raises the alarm for asthma.

In addition to being a medical journalist, the author Ford Vox of the article is a neurorehabilitation physician who is board-certified physical medicine and rehabilitation physician with additional subspecialty board certification in brain injury medicine.

I was alerted by the possibility of a diagnosis of frontotemporal dementia by a tweet by Barney Carroll. He is a senior psychiatrist whom I have come to trust as a mentor on social media, even though we’ve never overlapped in the same department at the same time.

barney forget psychnoanalysis

And then there was this tweet about the Stat story, but I could judge its credibility because I did not know the tweeter or her source:

trump's disease

I followed up with a Google search and came across an article from August 2016, before the election:

Finally figured out Trump’s medical diagnosis after watching this:

It’s called Pick’s Disease, or frontotemporal dementia

Look at the symptoms, all of these which fit Trump quite closely:

  • Impulsivity and poor judgment
  • Extreme restlessness (early stages)
  • Overeating or drinking to excess
  • Sexual exhibitionism or promiscuity
  • Decline in function at work and home
  • Repetitive or obsessive behavior

And especially these, listed earlier in the article:

Excess protein build-up causes the frontal and temporal lobes of the brain, which control speech and personality, to slowly atrophy. 

Then I followed up with more Google searches, hitting MedLine Plus,  the website maintained by the National Institutes of Health’s Web site for patients and their families and friends and produced by the National Library of Medicine.

Pick disease

Pick disease is a rare form of dementia that is similar to Alzheimer disease, except that it tends to affect only certain areas of the brain.

Causes

People with Pick disease have abnormal substances (called Pick bodies and Pick cells) inside nerve cells in the damaged areas of the brain.

Pick bodies and Pick cells contain an abnormal form of a protein called tau. This protein is found in all nerve cells. But some people with Pick disease have an abnormal amount or type of this protein.

The exact cause of the abnormal form of the protein is unknown. Many different abnormal genes have been found that can cause Pick disease. Some cases of Pick disease are passed down through families.

Pick disease is rare. It can occur in people as young as 20. But it usually begins between ages 40 and 60. The average age at which it begins is 54.

Symptoms

The disease gets worse slowly. Tissues in parts of the brain shrink over time. Symptoms such as behavior changes, speech difficulty, and problems thinking occur slowly and get worse.

Early personality changes can help doctors tell Pick disease apart from Alzheimer disease. (Memory loss is often the main, and earliest, symptom of Alzheimer disease.)

People with Pick disease tend to behave the wrong way in different social settings. The changes in behavior continue to get worse and are often one of the most disturbing symptoms of the disease. Some persons have more difficulty with decision making, complex tasks, or language (trouble finding or understanding words or writing).

The website notes

A brain biopsy is the only test that can confirm the diagnosis.

However, some alternative diagnoses can be ruled out:

Your doctor might order tests to help rule out other causes of dementia, including dementia due to metabolic causes. Pick disease is diagnosed based on symptoms and results of tests, including:

Assessment of the mind and behavior (neuropsychological assessment)

Brain MRI

Electroencephalogram (EEG)

Examination of the brain and nervous system (neurological exam)

Examination of the fluid around the central nervous system (cerebrospinal fluid) after a lumbar puncture

Head CT scan

Tests of sensation, thinking and reasoning (cognitive function), and motor function

Back to Ford Vox in his Stats article:

In Trump’s case, we have no relevant testing to review. His personal physician issued a thoroughly unsatisfying letter before the election that didn’t contain much in the way of hard data. That’s a situation many people want to correct via an independent medical panel that can objectively evaluate the president’s fitness to serve. But the prospects for getting Congress to use the 25th Amendment in this way seem poor at the moment.

What we do have are a growing array of signs and symptoms displayed in public for all to see. It’s time to discuss these issues in a clinical context, even if this is a very atypical form of examination. It’s all we have. And even if the president has a physical exam early next year and releases the records, as announced by the White House, what he really needs is thorough cognitive testing.

So?

Before biting the bullet, I also spoke with Dr. Dennis Agliano, who chairs the AMA’s Council on Ethical and Judicial Affairs, the panel that wrote the new ethical guidance. He advised me to be careful: “You can get yourself into hot water, since there are people who like Trump, and they may submit a complaint to the AMA,” the Tampa otolaryngologist told me. Ultimately, he reassured me that I should just do what I think is right.

Which is warn the president that he needs to be evaluated for a brain disease.

Good luck, Dr Vox, but at least we have a reasonable hypothesis on the table. As Barney Carroll says “Time will tell.”

slurred speech

Using F1000 “peer review” to promote politics over evidence about delivering psychosocial care to cancer patients

The F 1000 platform allowed authors and the reviewers whom they nominated to collaborate in crafting more of their special interest advocacy that they have widely disseminated elsewhere. Nothing original in this article and certainly not best evidence!

 

mind the brain logo

A newly posted article on the F1000 website raises questions about what the website claims is a “peer-reviewed” open research platform.

Infomercial? The F1000 platform allowed authors and the reviewers whom they nominated to collaborate in crafting more of their special interest advocacy that they have widely disseminated elsewhere. Nothing original in this article and certainly not best evidence!

I challenge the authors and the reviewers they picked to identify something said in the F1000 article that they have not said numerous times before either alone or in papers co-authored by some combination of authors and the reviewers they picked for this paper.

F1000 makes the attractive and misleading claim that versions of articles that are posted on its website reflect the response to reviewers.

Readers should be aware of uncritically accepting articles on the F 1000 website as having been peer-reviewed in any conventional sense of the term.

Will other special interests groups exploit this opportunity to brand their claims as “peer-reviewed” without the risk of having to tone down their claims in peer review? Is this already happening?

In the case of this article, reviewers were all chosen by the authors and have a history of co-authoring papers with the authors of the target paper in active advocacy of a shared political perspective, one that is contrary to available evidence.

Cynically, future authors might be motivated to divide their team, with some remaining authors and others dropping off to become nominated as reviewers. They could then suggest content that had already been agreed would be included, but was left off for the purposes being suggested in the review process

F1000

F1000Research bills itself as

An Open Research publishing platform for life scientists, offering immediate publication of articles and other research outputs without editorial bias. All articles benefit from transparent refereeing and the inclusion of all source data.

Material posted on this website is labeled as having received rapid peer-review:

Articles are published rapidly as soon as they are accepted, after passing an in-house quality check. Peer review by invited experts, suggested by the authors, takes place openly after publication.

My recent Google Scholar alert call attention to an article posted on F1000

Advancing psychosocial care in cancer patients [version 1; referees: 3 approved]

 Who were the reviewers?

open peer review of Advancing psychosocial care

Google the names of authors and reviewers. You will discover a pattern of co-authorship; leadership positions in international Psycho-Oncology society, a group promoting the mandating of specially mental health services for cancer patients, and lots of jointly and separately authored articles making a pitch for increased involvement of mental health professionals in routine cancer care. This article adds almost nothing to what is multiply available elsewhere in highly redundant publications

Given a choice of reviewers, these authors would be unlikely to nominate me. Nonetheless, here is my review of the article.

 As I might do in a review of a manuscript, I’m not providing citations for these comments, but support can readily be found by a search of blog posts at my website @CoyneoftheRealm.com and Google Scholar search of my publications. I welcome queries from anybody seeking documentation of these points below.

 Fighting Spirit

The notion that cancer patients having a fighting spirit improves survival is popular in the lay press and in promoting the power of the mind over cancer, but it has thoroughly been discredited.

Early on, the article identifies fighting spirit as an adaptive coping style. In actuality, fighting spirit was initially thought to predict mortality in a small methodologically flawed study. But that is no longer claimed.

Even one of the authors of the original study, Maggie Watson,  expressed relief when her own larger, better designed study failed to confirm the impression that a fighting spirit extended life after diagnosis  of cancer. Why? Dr. Watson was concerned that the concept was being abused in blaming cancer patients who were dying there was to their personal deficiency of not having enough fighting spirit.

Fighting spirit is rather useless as a measure of psychological adaptation. It confounds severity of cancer enrolled dysfunction with efforts to cope with cancer.

Distress as the sixth vital sign for cancer patients

distress thermometerBeware of a marketing slogan posing as an empirical statement. Its emptiness is similar to that of to “Pepsi is the one.” Can you imagine anyone conducting a serious study in which they conclude “Pepsi is not the one”?

Once again in this article, a vacuous marketing slogan is presented in impressive, but pseudo-medical terms. Distress cannot be a vital sign in the conventional sense. Thr  vital signs are objective measurements that do not depend on patient self-report: body temperature, pulse rate, and respiration rate (rate of breathing) (Blood pressure is not considered a vital sign, but is often measured along with the vital signs.).

Pain was declared a fifth vital sign, with physicians mandated  by guidelines to provide routine self-report screening of patients, regardless of their reasons for visit. Pain being the fifth vital sign seems to have been the inspiration for declaring distress as the sixth vital sign for cancer patients. However policy makers declaring pain  as the fifth vital sign did not result in improved patient levels of pain. Their subsequent making intervention mandatory for any reports of pain led to a rise in unnecessary back and knee surgery, with a substantial rise in associated morbidity and loss of function. The next shift to prescription of opioids that were claimed not to be addictive was the beginning of the current epidemic of addiction to prescription opioids. Making pain the fifth vital sign is killed a lot of patients and  turned others into addicts craving drugs on the street because they have lost their prescriptions for the opioids that addicted them.

pain as 5th vital signCDC launches

 Cancer as a mental health issue

There is a lack of evidence that cancer carries a risk of psychiatric disorder more than other chronic and catastrophic illnesses. However, the myth that there is something unique or unusual about cancer’s threat to mental health is commonly cited by mental health professional advocacy groups is commonly used to justify increased resources to them for specialized services.

The article provides an inflated estimate of psychiatric morbidity by counting adjustment disorders as psychiatric disorders. Essentially, a cancer patient who seeks mental health interventions for distress qualifies by virtue of help seeking being defined as impairment.

The conceptual and empirical muddle of “distress” in cancer patients

The article repeats the standard sloganeering definition of distress that the authors and reviewers have circulated elsewhere.

It has been very broadly defined as “a multifactorial, unpleasant, emotional experienceof a psychological (cognitive, behavioural, emotional), social and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms and its treatment and that extends along a continuum, ranging from common normalfeelings of vulnerability, sadness and fears to problems that can become disabling, such as depression, anxiety, panic, social isolation and existential and spiritual crisis”5

[You might try googling this. I’m sure you’ll discover an amazing number of repetitions in similar articles advocating increasing psychosocial services for cancer patients organized around this broad definition.]

Distress is so broadly defined and all-encompassing, that there can be no meaningful independent validation of distress measures except for by other measures of distress, not conventional measures of adaptation or mental health. I have discussed that in a recent blog post.

If we restrict “distress” to the more conventional meaning of stress or negative affect, we find that any elevation in distress (usually 35% or so) associated with onset diagnosis of cancer tends to follow a natural trajectory of decline without formal intervention. Elevations in distress for most cancer patients, are resolved within 3 to 6 months without intervention. A residual 9 to 11% of cancer patients having elevated distress is likely attributed to pre-existing psychiatric disorder.

Routine screening for distress

The slogan “distress is the sixth vital sign” is used to justify mandatory routine screening of cancer patients for distress. In the United States, surgeons cannot close their electronic medical records for a patient and go on to the next patient without recording whether they had screened patients for distress, and if the patient reports distress, what intervention has been provided. Clinicians simply informally asking patients if they are distressed and responding to a “yes” by providing the patient with an antidepressant without further follow up allows surgeons to close the medical records.

As I have done so before, I challenge advocates of routine screening of cancer patients for distress to produce evidence that simply introducing routine screening without additional resources leads to better patient outcomes.

Routine screening for distress as uncovering unmet needs among cancer patients

 Studies in the Netherlands suggest that there is not a significant increase in need for services from mental health or allied health professionals associated with diagnosis of cancer. There is some disruption of such services that patients were receiving before diagnosis. It doesn’t take screening and discussion to suggest that patients that they at some point resume those services if they wish. There is also some increased need for physical therapy and nutritional counseling

If patients are simply asked a question whether they want a discussion of the services (in Dutch: Zou u met een deskundige willen praten over uw problemen?)  that are available, many patients will decline.

Much of demand for supportive services like counseling and support groups, especially among breast cancer patients is not from among the most distressed patients. One of the problems with clinical trials of psychosocial interventions is that most of the patients who seek enrollment are not distressed, and less they are prescreened. This poses dilemma: if you require elevated distress on a screening instrument, we end up rationing services and excluding many of the patients who would otherwise be receiving them.

I welcome clarification from F 1000 just what they offer over other preprint repositories. When one downloads a preprint from some other repositories, it clearly displays “not yet peer-reviewed.” F 1000 carries the advantage of the label of “peer-reviewed, but does not seem to be hard earned.

Notes

Slides are from two recent talks at Dutch International Congress on Insurance Medicine Thursday, November 9, 2017, Almere, Netherlands   :

Will primary care be automated screening and procedures or talking to patients and problem-solving? Invited presentation

and

Why you should not routinely screen your patients for depression and what you should do instead. Plenary Presentation

        

                                  

 

 

 

Stop using the Adverse Childhood Experiences Checklist to make claims about trauma causing physical and mental health problems

Scores on the adverse childhood experiences (ACE) checklist (or ACC) are widely used in making claims about the causal influence of childhood trauma on mental and physical health problems. Does anyone making these claims bother to look at how the checklist is put together and consider what a summary score might mean?

 

mind the brain logo

Scores on the adverse childhood experiences (ACE) checklist (or ACC) are widely used in making claims about the causal influence of childhood trauma on mental and physical health problems. Does anyone making these claims bother to look at how the checklist is put together and consider what a summary score might mean?

In this issue of Mind the Brain, we begin taking a skeptical look at the ACE checklist. We ponder some of the assumptions implicit in what items were included and how summary scores of the number of items checked are interpreted. Readers will be left with profound doubts that the ACE is suitable for making claims about trauma.

This blog will eventually be followed by another that presents the case that scores on the ACC do not represent a risk factor for health problems, only a relatively uninformative risk marker. In contrast to potentially modifiable risk factors, risk markers are best interpreted as calling attention to the influence of some combination of other risk factors, many of as yet unspecified, but undoubtedly of an entirely different nature than what is being studied. What?!! You will have to stay tuned, but I’ll give some hints about what I am talking about in the current blog post.

Summary of key points

 The ACE checklist is a collection of very diverse and ambiguous items that cannot be presumed to necessarily represent traumatic experiences.

Items variously

  • Represent circumstances that are not typically traumatic.
  • Reflect the respondent’s past or current psychopathology.
  • Make equivalent and traumatic vastly different experiences, many neutral and some that are positive.
  • Reinterpret a personal vulnerability due to familial transmission of psychopathology, either direct or indirect, rather than simply an exposure to events.
  • Ignore crucial contextual information, including timing of events.

There is reason not to assume that higher summed scores for the ACE represent more exposure to trauma than lower scores.

Are professionals misinterpreting the ACE checklist just careless or are they ideologues selectively identifying “evidence” for their positions which don’t depend on evidence at all?

ace-7Witness claims based on research with the ACE that migraines are caused by sexual abuse   and that psychotherapy addressing that abuse should be first line treatment. Or claims that childhood trauma is as strong a risk factor for psychosis and schizophrenia as smoking is for lung cancer [* ] and so psychotherapy is equivalent to medication in its effects. Or claims that myalgic encephalomyelitis, formerly known as chronic fatigue syndrome, is caused by childhood trauma and the psychological treatments can be recommended as the treatment of choice. These claims share a speculative, vague neo-cryptic pseudopsychoanalytic set of assumptions that is seldom articulated or explicitly confronted with evidence. Authors typically leap from claims about childhood trauma causing later problems to non sequitur claims about the efficacy of psychological intervention in treating these problems by addressing trauma. These claims about efficacy of trauma-focused treatment are not borne out in actually examining effects observed in randomized controlled trials.

Rather than attempting to address a provocative question about investigator motivation without a ready way of answering it, I will show most claims about trauma causing mental and physical health problems are, at best, based on very weak evidence, if they depend solely on the ACE checklist.

I will leave for my readers to decide if some authors who make such a fuss about the ACE have bothered to look at the instrument or care that is so inappropriate for the purposes to which they put it.

The ACE is reproduced at the bottom of this post and it is a good idea to compare what I’m saying about it to the actual checklist.

e5fc302ac1fabf0757e62a935b27800d
What “science” is behind such speculations?

The ACE was originally intended for educational purposes, not as a scientific instrument. Perhaps that explains its gross deficiencies as a key measure of psychological and epidemiological constructs.

The ACE checklist is a collection of very different and ambiguous items that cannot be presumed to represent traumatic experiences.

The ACE consists of ten dichotomous items for which the respondent is asked to indicate no/yes whether an experience occurred before the age of 18.  However, for six of the 10 items, the respondent is given further choices  that often differ greatly in the kind of experience to which the items refer. Scoring of the instrument does not take which of these experiences is the basis of a response. For example,

5. Did you often feel that … You didn’t have enough to eat, had to wear dirty clothes, and had no one to protect you? or

Your parents were too drunk or high to take care of you or take you to the doctor if you needed it?

Yes   No     If yes enter 1     ________

This item treats some very different circumstances as equivalent. The first half is complex, but largely covers the experience of living in poverty, but combines that with “having no one to protect you.” In contrast, the second half refers to substance abuse on the part of parents. In neither case, is there any room for interpreting what mitigating circumstances in the respondent’s life might have influenced effects of exposure. Presumably, the timing of this exposure would be important. If the exposure only occurred at the end of the 18 year period covered by the checklist, effects could be mitigated by other individual and social resources the respondent had.

Single items that are added together in a summary score.  We have to ask whether there is an equivalency between the two halves of the item that will be treated as the same. This will be an accumulating concern as we go through the 10 item questionnaire

The items vary greatly in the likelihood that they refer to an experience that was traumatic. Seldom do any of the researchers who use the ACE explain what they mean by trauma. If they did, I doubt that they could make a good argument that in endorsing many of these items would indicate that a respondent had faced a trauma.

From the third edition of the American Psychiatric Association Diagnostic and Statistical Manual (DSM-III) onward to DSM-5, the assumption has been that a traumatic event is a catastrophic stressor outside the range of usual human experience.

With that criteria in mind we have to ask if items are likely to represent a traumatic experience for most people. In answering this question, we also have to ask how we willing to consider a particular item is equivalent to other items in arriving at an overall score reflecting exposure to trauma before age 18. Yet, if summary scores are to be meaningful, assumption has to be made that items contribute equally if they are endorsed

6. Were your parents ever separated or divorced?

Yes   No     If yes enter 1     ________

The item refers to a highly prevalent and complex event, the nature and consequences of which are likely to unfold over time. Importantly, we need a sense of context to judge whether the event is traumatic and, if so how severe. Presumably, it would matter greatly when, across the 18 year span, the event that occurred. No timing or other information is asked of the respondent, only whether or not this event occurred. Neither the respondent nor anyone interpreting a score on the inventory has further information as to what is meant.

Other problems with ambiguous items.

Questions can be raised about the validity of all the individual items and the wisdom of combining them as equivalent in creating a summary score.

Items 1 and 2: Items raise questions about what role the respondent played eliciting the event.

 Did an event simply befall a respondent? Was it related to some pre-existing characteristic of the respondent? Or did the respondent have an active role in generating the event?

Did a parent or other adult member of the household often…

Swear at you, insult you, put you down, or humiliate you?

or

Act in a way that made you afraid that you might be physically hurt?

Yes   No     If yes enter 1     ________

And

Did a parent or other adult in the household often …

Push, grab, slap, or throw something at you?

or

Ever hit you so hard that you had marks or were injured?

Yes   No     If yes enter 1     ________

 Here, as throughout the rest of the checklist, questions can be raised about whether these items refer simply to an environmental exposure in epidemiological terms, say, equivalent to asbestos or tobacco. We don’t know the frequency, intensity or context of a the behavior in question, all of which may be crucial in evaluating whether a trauma occurred. For instance, it matters greatly if the behavior happened frequently when the respondent as a toddler or was limited to a struggle that occurred when the respondent was a teen high on drugs  attempting to take the car keys and go for a after midnight drive.

Like most of the rest of the questionnaire, there is the question of timing.

Item 3: There is so much ambiguity in endorsments of (ostensible) sexual abuse. Maybe it was a positive, liberating experience.

This is a crucial item and discussions of the ACE often assume that it is endorsed and represents a traumatic experience:

Did an adult or person at least 5 years older than you ever…

Touch or fondle you or have you touch their body in a sexual way?

or

Try to or actually have oral, anal, or vaginal sex with you?

Note that this is a complex item for which endorsement could be on the basis of a single instance of a person at least 5 years older touching or fondling the respondent. What if the presumed “perpetrator” is the 20 year old boyfriend or girlfriend of a 14 year old?

Are we willing to treat as equivalent “touch” or ‘fondle you” and “having anal sex” in all instances?

Arguably, the event which construed as trauma could actually be quite positive, as in the respondent  forming a secure attachment with a somewhat older, but nonetheless appropriate partner. All that is unconventional is not traumatic. What if the respondent and  alleged “perpetrator” were in a deeply intimate relationship or already married?

The research that attempts to link endorsement of such an item to lasting mental and physical health problems is remarkably contradictory and inconsistent 

Item 4:  Does this  item reflect the respondent’s serious clinical depression or other mental disorder before age 18 or currently, when the checklist is being completed?

Did you often feel that …  No one in your family loved you or thought you were important or special?    or

Your family didn’t look out for each other, feel close to each other, or support each other?

Yes   No     If yes enter 1     ________

As elsewhere in the checklist, there is no place for the respondent or someone interpreting a “yes” response for taking into account timing or contextual factors that might mitigate or compound effects of this “exposure.”

Item 5: Is this a  traumatic exposure or an enduring set of circumstances conferring multiple known risks to mental and physical health?

Did you often feel that …

You didn’t have enough to eat, had to wear dirty clothes, and had no one to protect you?

or

Your parents were too drunk or high to take care of you or take you to the doctor if you needed it?

Yes   No     If yes enter 1     ________

This item has already been discussed above, but is worth revisiting in terms of raising issues whether particular items refer either directly or indirectly to enduring sets of circumstances that pose their own enduring threat. The relevant question is whether items which ostensibly represent “traumatic events” and risk for subsequent problems are not risk factors, but only risk indicators, and not particularly informative ones.

Item 7: Could an ostensibly a traumatic exposure actually be no actual exposure?

Was your mother or stepmother:

Often pushed, grabbed, slapped, or had something thrown at her?    or

Sometimes or often kicked, bitten, hit with a fist, or hit with something hard?    or

Ever repeatedly hit over at least a few minutes or threatened with a gun or knife?

Yes   No     If yes enter 1     ________

Like item four, which refers to ostensible sexual abuse, this item seems to be one of the least ambiguous in terms of representing exposure to risk. But does it? We don’t know the timing, duration, or context. For instance, the mother might no longer be in the home and the respondent might not have known what happened at the time. There is even the possibility that the respondent was the “perpetrator” of such violence against the mother.

Items 8 and 9: Are traumatic exposures or indications of familial transmission of psychopathology?

Did you live with anyone who was a problem drinker or alcoholic or who used street drugs?

Yes   No

If yes enter 1     ________

And

Was a household member depressed or mentally ill or did a household member attempt suicide?    Yes   No     If yes enter 1     ________

These items are highly ambiguous. They don’t take in consideration whether the person was a biological relative, or whether they were a parent, sibling, or someone not biologically related. They don’t take into account timing. There may not have even been any direct exposure to the substance misuse or the attempted suicide, but the respondent only later learned of something that was closeted.

Item 10: traumatic exposure or relief from exposure?

Did a household member go to prison?

Yes   No

If yes enter 1     ________

The implications of endorsement of this item depend greatly on whom the household member was and the circumstances of them going to prison.

There may be a familial relationship with this person, but it could have been an abusive stepparents or stepsiblings, with the incarceration representing a lasting relief from some impressive situations. Or the person who became incarcerated was not an immediate family member, but somewhat more transient, maybe someone who was just renting a room or given a place to stay. We just don’t know.

Does adding up all these endorsements in a summary score clarify or confuse further?

Now add up your “Yes” answers:   _______   This is your ACE Score

 It would be useful to briefly review the assumptions involved in summing across items of a checklist and entering the summary score as a continuous variable in statistical analyses.

Classical test theory recognizes that the individual items may imperfectly reflect the underlying construct, in this case, traumatic exposure. However, in constructing a sum, the expectation is that the imperfections or errors of measurement in particular items cancel each other out. The summed score becomes a purer a representation of the underlying construct than any of the original items. Thus, the summary score will be more reliable and valid than any of the individual items would be.

There are a number of problems in applying this assumption to a summary ACE score. The items are quite heterogeneous, i.e., they vary wildly in whether they are likely to represent a traumatic exposure, and if so, the severity of that exposure. More importantly, there is a huge amount of variation in what these brief items would represent for particular individuals in the contexts they found themselves in the first 18 years of their lives. Undoubtedly, most endorsements of these items would represent false positives, if we hold ourselves to any strict definitions of trauma. If we don’t do so, we risk equating the only normative experiences that may have neutral or even positive effects on the respondent with serious exposures to traumatic events with lasting consequences

We are not in a position to know whether a score of five or even eight necessarily represents more traumatic exposure than a score of one.

Moreover, there is important empirical research of the clustering of events. We certainly cannot consider them random and unrelated. One classic study found 

In our data, total CCA was related to depressive symptoms, drug use, and antisocial behavior in a quadratic manner. Without further elucidation, this higher order relationship could have been interpreted as support for a sensitization process in which the long-term impact of each additional adversity on mental health compounds as childhood adversity accumulates. However, further analysis revealed that this acceleration effect was an artifact of the confounding of high cumulative adversity scores with the experience of more severe events. Thus, respondents with higher total CCA had disproportionately poorer emotional and behavioral functioning because of both the number and severity of the adversities they were exposed to, not the cumulative number of different types of adversities experienced.

And

Because low-impact adversities did not present a cumulative hazard to young adult mental health, they functioned as suppressor events in the total sum score, consistent with Turner and Wheaton’s (1997) expectation. Their inclusion increased the “noise” in the score and greatly watered down the influence of high-impact events. Thus, in addition to decreasing efficiency, total scores may seriously underestimate the cumulative effects of severe forms of childhood adversity, such as abuse and serious neglect.

But what if many or most of the high scores in a particular sample represent only a clustering of low- or no-impact adversities?

Another large-sample, key study cautioned:

Significant effects of parental separation}divorce in predicting subsequent mood disorders and addictive disorders are powerfully affected by whether or not there was parental violence and psychopathology in the household prior to the break-up and whether exposure to these adversities was reduced as a result of the separation (Kessler et al. 1997a). There are some situations – such as one in which the father was a violent alcoholic – where our data suggest that parental divorce and subsequent removal of the respondent from exposure to the father might actually be associated with a significant improvement in the respondent’s subsequent disorder risk profile, a possibility that has important social policy implications.

Finding Your ACE Score-page-0

NOTE

*Richard Bentall commonly interprets summed ACE scores in peer reviewed articles  as having a traditional dose-response association with mental health outcomes, and therefore as representing a modifiable causal factor in psychosis. In books and in social media, his claims become simply absurd.

bentall

I don’t think his interpretations withstand a scrutiny of the items and what a summed score might conceivably represent.

eBook_Mindfulness_345x550Preorders are being accepted for e-books providing skeptical looks at mindfulness and positive psychology, and arming citizen scientists with critical thinking skills. 

I will also be offering scientific writing courses on the web as I have been doing face-to-face for almost a decade. I want to give researchers the tools to get into the journals where their work will get the attention it deserves.

Sign up at my website to get advance notice of the forthcoming e-books and web courses, as well as upcoming blog posts at this and other blog sites. Get advance notice of forthcoming e-books and web courses. Lots to see at CoyneoftheRealm.com.