Monday, March 1, 2010

My DSM-5 Report Card: Grading Bipolar - Part V, Child Bipolar

Ten years ago, virtually everyone thought you had to be of voting age to qualify for a bipolar diagnosis. Thankfully that has changed. In a post here last May, I placed recognition of child bipolar at the top of my list of mental health stories over the past decade. The draft DSM-5, unfortunately, is poised to reverse a decade of progress.

Some background ...

Back in the 1990s, Joseph Biederman and his colleagues at Harvard separated out a population of troubled kids whose behavior could not be entirely accounted for by ADHD or various conduct disorders. To Dr Biederman, plus investigators at other centers, the behavior looked a lot more like bipolar disorder.

Mood swings proved a key separator from ADHD, with grandiosity a major giveaway, but the manias these kids experienced were rarely euphoric, more like mixed raging states that literally held entire families hostage. Because these kids tended to cycle in and out of these states at least once a day (rather than the one-week minimum) technically they did not meet the DSM criteria for bipolar.

This was not a case of kids merely acting out, nor of bad parenting. Parents reported horror stories of their very young kids wanting to die and impulsively jumping out of moving cars and a lot more.

Although there was no precise agreement among researchers on the fine points of what a child bipolar diagnosis would look like, there was a strong general consensus that the phenomenon of raging kids with out-of-control moods was indeed real and needed to be included in the next DSM. 

As awareness grew, so did the rates of kids being diagnosed with bipolar. This resulted in an inevitable backlash, not only among the general public, but among psychiatrists and other professionals. The issue was further complicated by turf wars involving ADHD specialists and child therapists.

In the meantime, the tragic death in 2007 of four-year-old Rebecca Riley on a medications overdose set off a feeding frenzy of hysterical and uninformed commentary.  Soon after, it was discovered that Dr Biederman had neglected to disclose his financial ties to Johnson&Johnson, makers of Risperdal, a drug used for treating bipolar. This resulted in yet another feeding frenzy.

The unenviable task for those working on the DSM-5 was to sort out competing scientific claims, rise above petty professional turf issues, pay no attention to the crazy talk inside and outside psychiatry, and arrive at a diagnosis (perhaps more than one) wide enough to identify kids in need but sufficiently narrow to avoid pathologizing normal child behavior.

On with the grading ...

Narrow, Intermediate, and Broad Views

In 2003, Ellen Leibenluft of the NIMH proposed three “phenotypes” of “juvenile mania.” The “narrow phenotype” would strictly adhere to adult criteria. Two “intermediate phenotypes” would lower the criteria (to shorter episodes featuring tantrums and rages), while the “broad phenotype” would recognize a raging and aroused population without classic mood episodes.

As long as “narrow” and “intermediate” accompanied “broad,” these classifications showed promise. Unfortunately, the draft DSM-5 picked just one. Think of “The One Musketeer” or an eskimo with just one word for snow.

Grade: F-minus.

Pediatric (or Early Onset) Bipolar Disorder

Despite the claims of naysayers, the case for DSM pediatric bipolar is well-established. Dr Leibenluft’s “narrow” view (with identical pediatric and adult versions) would work, provided that first the criteria for the adult version is slightly widened. (This would account for clinical realities occurring within the adult population, as well.)

The draft DSM-5 for adult bipolar is arguably half-way there with a widened view of mixed states, but appears incapable of making a decision concerning extreme rapid-cycling.

An “intermediate” view would acknowledge that kids may present somewhat differently than adults, but that their behavior can nonetheless be attributed to bipolar. The tip-off is episodic states. The pediatric version would stress the mixed state rages and extreme rapid cycling.

The DSM need not include both views (though it would be helpful), provided one of them employs a name that acknowledges both the illness and the population it preys upon. Thus: “Pediatric Bipolar Disorder,” “Child and Adolescent Bipolar Disorder,” “Juvenile Bipolar Disorder,” or “Early Onset Bipolar Disorder.”

In a pinch, something like “early onset” could be employed as a specifier under the standard bipolar diagnosis. The point is the DSM-5 needs to send a clear signal to clinicians and the general public that bipolar in kids is very real.

Suffice to say, the draft DSM-5 chose not to send that signal. Why are we not surprised?

Grade: No grade. This is unforgivable.

Temper Dysregulation Disorder with Dysphoria - Credibility

In light of the failure of the draft DSM-5 to include a diagnosis along the lines of pediatric bipolar, everything else its two relevant workgroups may come up with is highly suspect. This is unfortunate, as the new diagnosis of “temper dysregulation disorder with dysphoria” (TDDD) deserves a fair hearing. But in the present context, TDDD comes across as “anything but bipolar.”

Grade: F-minus.

TDDD, Scare Tactics

The DSM-5 Child and Adolescent Disorders Workgroup (which collaborated with the Mood Disorders Workgroup) served up a background paper detailing its reasons for this new diagnosis. The first paragraph cites a study that “found a 40-fold increase between 1994 and 2003 in the number of outpatient pediatric psychiatry visits associated with the diagnosis of BD.”

But, when starting from a baseline of zero, any increase cited in percentages is highly suspect. A 2007 study found that youth released from the hospital with a primary diagnosis of bipolar amounted to less than one in a thousand.

True, misdiagnosis and overdiagnosis is always a danger. But clinicians finally waking up to reality can be regarded as a cautiously encouraging sign. Meanwhile, arguments employing selective science in pursuit of an agenda are best suited to talk radio.

Grade: F-minus.

TDDD - Justification

An earlier version of TDDD was “severe mood dysregulation” (SMD), a term coined by Dr Leibenluft to define her “broad phenotype.” These are kids who experience down moods and rage in a manner similar to those with bipolar, but not in episodes. This may be the tip-off that TDDD is a separate phenomenon entirely from child bipolar, or, if related, nonetheless needs to be separated out.

The background paper cited an NIMH study which found that, unlike kids with narrow bipolar symptoms, minors with SMD failed to develop classic mania/hypomanic episodes when followed over time. Less reliable data suggest that kids with SMD are more likely to be at risk for unipolar than bipolar as young adults.

What’s missing from the analysis is the fact that the current DSM does not recognize a wide variety of depressions and hypomanias as part of bipolar (namely mixed states and very rapid cycling). So SMD kids may very well experience mania/hypomania episodes and grow into adults whose moods more resemble bipolar than unipolar.

Again, SMD/TDDD may be valid (the background paper also cited preliminary brain scan studies), but when the yardstick is crooked so are any measures and conclusions based on those measures.

In any other context, the inclusion of an entirely new diagnosis based on the best knowledge we have at the time may have been justified. But not when the Mood Disorders Workgroup deliberately and obstinately shunned the “best knowledge” criterion for all the rest of mood disorders, even when clinical reality screamed for such changes.

Another way of putting it: Extreme double standards are in force here.

Grade: F-minus.

TDDD - A Catch-all Diagnosis?

At least the term bipolar was sufficiently frightening to make clinicians think twice before diagnosing kids. But a diagnosis that comes across as a euphemism? And one sufficiently broad to embrace normal kids going through bad phases?

Yes, the background paper cautions that kids with TDDD are as badly off as those with bipolar, but who (besides me) reads background papers?

What is going on here? Has the draft DSM-5 come up with a new diagnosis to make it safe for clinicians to diagnose problem kids with bipolar without calling it bipolar? In which case, we may find overdiagnosis in abundance, along with inappropriate treatments.

We wouldn’t be asking these questions if those working on the draft DSM-5 possessed the common sense to issue a clear and unambiguous “pediatric bipolar” diagnosis. Then there would have been an acceptable context for TDDD. This would have accorded with the original intention of Dr Leibenluft when she came up with SMD as one of three child bipolar phenotypes.

Leave it to the DSM-5 people to mess it up entirely.

Grade: F-minus.

Summing Up

Coming up with criteria for child bipolar was supposed to be a collaborative effort between two of the DSM-5’s workgroups. Judging by how the Mood Disorders Workgroup passed on all but one opportunity to make substantial changes to the rest of mood disorders, it is fairly apparent that they caved into the demands of the Child and Adolescent Workgroup.

No recognition of some form of child bipolar at all? No attempt to provide the necessary context for a new TDDD diagnosis? Clearly, the child psych people, with an agenda of their own, ran roughshod over the mood disorders people, a fight that never should have been allowed to break out.

The result is an unmitigated disaster, one that shames psychiatry and performs a considerable disservice to the public, whose interest is supposed to come first.

More DSM-5 report cards to come ...

Previous report cards:


grammyat50 said...

Who is the Army guy that is getting yelled at in the photo?? He really looks like MY son!!!!

Anonymous said...

I would LOVE to know how Ellen Leibenluft feels about the proposed TDD diagnostic criteria. I am familiar with her proposed phenotypes, and her definition of SMD. A psychiatrist suggested SMD as fitting my daughter (although I don't believe that she fits the SMD profile... because she has euphoric hypomanic states, and clear cycling patterns.)

In my opinion, the TDD description in the DSM-V draft, does not address the issues related to diagnosing bipolar in children.

I know that Leibenluft was involved in the DSM-V team. Any idea where she stands on what the team has come up with?

Thanks John, for your critique of the DSM-V draft.

BTW, I have read the background paper... so that is 2 of us at least. (It still doesn't cover the issue of children who actually would fit a bipolar diagnosis if only their psychiatrist understood how mania presents in a child!)

John McManamy said...

Hi, Anonymous. This answer is in 3 parts. Part I:

It's very reassuring to find out that someone else has come to a similar conclusion from reading the background paper. You're spot on: SMD/TDDD on its own does not address the clearly observable problem of bipolar in kids - at this stage it is only an unvalidated hypothesis for raging kids who don't appear to cycle up into grandiose states.

Yes, there may be a good reason for including the diagnosis in the next DSM, but only in the context of pediatric bipolar.

Dr Leibenluft's orginial SMD did occur in the context of pediatric bipolar (with her three phenotypes). Now we see no context.

I don't know how Dr Leibenluft feels all of this, but clearly the DSM is bent on adopting an illness of her own creation, which accrues enormous benefits to her, and which, in relation to BP kids organization she advises, raises some clearly disturbing issues, namely:

(continued in Part II)

John McManamy said...

Part II

1. Dr Leibenluft is on the Scientific Advisory Council of the Child and Adolescent Bipolar Foundation. The CABF has an all-star line-up on its SAC, but ...

2. ... when I went to the CABF website, the CABF took a clear position of uncritically accepting the TDDD diagnosis for the DSM. No critical commentary re how does pediatric BP fit into the equation. No critical commentary of how the DSM screwed up completely by totally ignoring child BP. No critical commentary on how the DSM wrongly justified the SMD/TDDD diagnosis by suggesting - with no proof - that pediatric bipolar was overdiagnosed.

3. So were the other members of the SAC asleep? Probably. Remember, advisory boards, whether scientific or some other type, rarely meet and its members rarely get involved. But ...

4. ... some of these kind of members do get involved and their counsel is sought.

5. Keep in mind that the CABF - like a good many mental health groups such as NAMI and DBSA - are advocacy, education, support organizations working on behalf of the people it serves. In this case families affected by pediatric bipolar.

6. It is not an organization to advance the research agenda of any scientist serving in an advisory committee.

7. The curious uncritical acceptance by the CABF of Dr Leibenluft's SMD/TDDD diagnosis while not speaking out for a pediatric bipolar diagnosis raises the APPEARANCE of gross impropriety.

(continued in part III)

John McManamy said...

Part III

8. This does not mean anyone did anything wrong. Only an APPEARANCE of conduct that cuts to the credibility of CABF and Dr Leibenluft.

9. In other words, there is a clear conflict of interest situation.

10. This involves the duties of the CABF to the people it serves and the personal gain from Dr Leibenluft by having her research agenda advanced.

11. That personal gain is the feather in her cap from having an illness solely of her own creation going into the DSM-5. She then becomes the "expert" who stands to accrue all manner of personal gain from her enhanced professional status.

12. Ordinarily, an advisor's research agenda is in clear alignment with the interests of the people served by the organization, so conflict of interest situations seldom arise.

13. But this is a case of clear conflict of interest. The interests between two parties are way out of alignment. The CABF has seemingly disregarded the interests of the people it serves. It is advancing the research agenda of an advisor.

14. Note I'm not saying that one is the result of another. But this is all about APPEARANCES.

15. There are three ways to resolve conflict of interest situations: 1) The individual concerned DECLARES the conflict or likelihood of conflict (most common example - financially benefiting from drug company largesse). Usually no big deal, as the situation is now out in the open. 2) The person involved divests herself of her conflicting interest (such as no longer taking money from drug companies - the doctors working on the DSM-5 had to do this). 3) Resign from the organization.

16. I'm sure everyone acted out of good will, but doctors and the people they work with can be enormously stupid regarding conflict of interest. I have a law degree and worked for 3 years on a body that regulated the practice of accountancy in New Zealand, so these things jump out at me loud and clear.

17. Again it's all about APPEARANCES. Because of appearances, the CABF's credibility is seriously undermined. Thus ...

18. ... it would be highly advisable for CABF and Dr Leibenluft to consider their options.

I have been a huge supporter of CABF since day one. Parents of bipolar kids are my favorite people. But when the CABF no longer addresses the needs of the people its supposed to serve, then the future of the organization is in doubt. I can see nothing good coming out of this. I'm sure there is a lot of internal dissention over this, already.

Anyway, I will be getting together a piece based on my concerns. Please feel free to comment.

Patricia said...

Not surprised about CABF. They seem obsessed with their "darlings" and feature the same small stable of experts over and over.

Their forums are a disaster due to a complete hands-off approach to managing participation by persons who are clearly using the forums to meet their own needs for dysfunctional attention. 100+ posts a day from 5 people out of 130 (no I am not kidding and it was on more than one forum for weeks on end) is simply on-line masturbation and it shouldn't be tolerated let alone encouraged as some moderators were doing.

Sorry to be so down on them but CABF was a huge disappointment for me as the parent of a BP kid. Found much better support and help on

Patricia said...

Correction: I should have said support groups not forums. I have not participated since they opened their groups to everyone so do not know if things are the same now. At the time last year when I was on the boards you had to pay to be a member in order to participate.