Fostering “Buy-In”: Step One in Bipolar Spectrum Treatment

August 1, 2006
James Phelps, MD

A look at how to use the spectrum concept to promote understanding and acceptance of bipolar II and soft bipolar diagnoses. In this article, you will find 5 tools for fostering what has been called “concordance” or, more simply, “buy-in.”

August 2006, Vol. XXIII, No. 9

“. . . if I ask somebody to accept lifelong treatment with what I recommend when I first meet them, that's like asking somebody on their first date to get married and have a family..”

-Gary Sachs,MD1

In a previous article, I discussed using the bipolar “spectrum” concept alongside the DSM system as a dual explanatory model (see “Bipolar Disorder: Particle or Wave? DSM Categories or Spectrum Dimensions?” July 2006). Here we will look at how to use the spectrum concept to promote understanding and acceptance of bipolar II and soft bipolar diagnoses. In this article, you will find 5 tools for fostering what has been called “concordance” or, more simply, “buy-in”:

  • Use of the Internet for guided patient education.

  • The Bipolarity Index from Massachusetts General Hospital's (MGH's) Bipolar Clinic and Research Program.

  • The Bipolar Spectrum Diagnostic Scale, an alternative to the widely distributed Mood Disorders Questionnaire (MDQ).

  • The hypomania;mania symptom checklist (HCL-32), a convenient, extensive list of hypomanic symptoms.

  • “Mixed states as waves”-a visual model for patients.

The important and understandable concern that these tools may lead to overdiagnosis will also be examined.

Patient education: toward acceptance of illness

First we diagnose and then we treat, right? The quotation from Gary Sachs highlights an important intermediate step-helping the patient accept the diagnosis. When the patient is still trying to figure out if a bipolar diagnosis really applies to him or her, proceeding with treatment is a recipe for noncompliance, although it is sometimes necessary (for an excellent review of this and other aspects of adherence, see Mitchell2).

Patients arrive at different stages in the process of accepting a diagnosis. Some have been looking so long for an explanation of their symptoms that when “bipolar disorder” is invoked, they experience relief and excitement about being provided with a new way of approaching their illness. This can lead to an over-reliance on the new explanatory model, with too much certainty that “This is it!”-including an overestimation of likely benefits and an underestimation of the risk of dashed hopes.

However, clinicians know that-up until recently, at least-the opposite scenario is more common. The patient hears “bipolar disorder” and immediately protests: “Oh no, Doc, I know what bipolar disorder is. That's mania, right? I know I've never had that.” Thus, for many patients, the first step after invoking the term “bipolar disorder” is an urgent “crash course” in bipolar variations. In most cases, this course must begin with direct emphasis on the depression symptoms, which constitute progressively more of the patient's experience of illness as one moves “down the spectrum” from bipolar I (about 60% of symptomatic time3) to bipolar II (about 90% of symptomatic time4) and beyond.

For most patients, this crash course includes an immediate explanation that bipolar disorder encompasses not just mania and depression but other variations in which symptoms are subtler and more complex (ie, hypomania and mixed states). This explanation can be very time consuming, however, and many patients need to start their bipolar education almost at the very beginning. Wouldn't it save a lot of time and energy to be able to refer patients to a reliable source of this information?

Patient education using the Internet

A Web site might be such a source. Even in the free clinic where I volunteer, most of the patients have access to the Internet-via the local library or a friend-and know how to use it. A recent Pew survey showed a continuing decline in the percentage of Americans who are still not “Internet users,” down to 27% in 2006.5

Having frequently tried to provide a brief verbal explanation of the spectrum concept of bipolar disorder, in 2001, I looked for a Web site that I could refer patients to for more information on bipolar II and the bipolar spectrum concept.

I was shocked to find how many bipolar Web sites are primarily about bipolar I. Take a look at the National Institute of Mental Health Web site,6 for example. Google “bipolar disorder,” and their site is at the top of the list. After a thoughtful (if rather dense) introduction comes the heading “What Are the Symptoms of Bipolar Disorder?” which begins: Bipolar disorder causes dramatic mood swings-from overly “high” and/or irritable to sad and hopeless, and then back again, often with periods of normal mood in between. Severe changes in energy and behavior go along with these changes in mood. The periods of highs and lows are called episodes of mania and depression.

This is followed by a list of “Signs and symptoms of mania”-DSM criteria. You'd think we were trying to make our job harder! If your patient goes here for information on the diagnosis of bipolar disorder but has never had a manic episode because he or she has bipolar II, his resistance to the diagnosis may well be reinforced. In my experience, patients faced with such a list commonly conclude that the diagnosis can't be correct because they're confident they've never had those symptoms.

As demonstrated by Judd and colleagues, 4 depression is by far the most dominant symptom of bipolar II, dwarfing hypomania almost 20 to 1 temporally. Therefore, the wise clinician learns to emphasize that depression symptoms are the patient's main issue but points out that the problem seems to be more complex than depression alone, since the patient's symptoms include irritability, agitation, severe sleep disturbance, or recurrent depression with a very sudden onset/offset. Patients approached this way are (in my experience) more likely to hear the term “bipolar” without rejecting it. Yet even at this point, they need additional education and may still be very tentative in their acceptance of the diagnosis. Five years ago, I was unable to find a Web site that teaches about bipolar II without emphasizing bipolar I phenomenology to the detriment of patients with bipolar II. Finally, in frustration, I created www.PsychEducation.org. Starting with the heading, “Mood Swings but not Manic,” patients and families can find a basic explanation of bipolar disorder, starting with “depression plus,” leading through “what happened to manic-depressive?” and the DSM system of diagnosis to the common presentations of bipolar II. The concept of a bipolar spectrum is also explained, with the important Ghaemi and associates7 article on bipolar “soft signs” noted and hyperlinked. Basic principles of treatment are presented in the treatment section, with links to plain-English summaries of recent expert consensus guidelines. Other aspects of diagnosis and treatment are provided on respective “detail” pages. Many other topics of special interest occupy their own separate pages layered behind these main sections, for a total of nearly 300 pages, most of which are kept updated as additional data emerge.

This approach to patient education has numerous advantages. By placing the details on linked pages “behind” the basics, the site accommodates readers at many levels. Citing and linking references throughout demonstrates a commitment to evidence, reinforcing the explicitly stated need for critical evaluation of any health information accessed over the Internet

Best of all, using a Web site for patient education not only saves one from repeating the same basic story over and over again, it is also a better medium, because patients and families can read at their own pace, take tangents looking for additional information on a particular area of interest, and return to these explanations several times in their learning. As their understanding becomes more sophisticated, they can follow additional links for details that might have been overwhelming at first.

(As a parenthetical note, I make no profit from the Web site and users are not tracked in any way. Two pharmaceutical company grants were used for the site's construction, but I have attempted to stay free of commercial influence [see the “funding” link on the site] and have encouraged users of the site to cross-check my presentations. McGraw-Hill also published a book version of the site recently.8)

Here's how I use the Web site in practice: when a patient arrives and a bipolar variation seems worthy of including in the differential diagnosis, I can spend the time I might have devoted to explaining bipolarity simply listening to the patient's experience (another tool for increasing buy-in). I then ask that the patient go to the Web site and read (in the section on bipolar II) at least the diagnosis and treatment pages.

For some patients, by this stage we may already have tentatively concluded that they have bipolar II or another DSM bipolar condition. For others there may be a suspicion that a bipolar-like process could be part of their experience, along with substance use disorder, posttraumatic stress disorder, social phobia (or less frequently, virtually any other anxiety disorder), or even some earlier borderline diagnosis they might have received.

We schedule a return visit within a few days to a week, which will include a discussion of whether a bipolar spectrum perspective (a framework for thinking, not a diagnosis as discussed in my previous article) seems to apply. Generally, on return, the patient (and often other family members) will have read the Web site pages as requested, and our discussion proceeds more directly to treatment options as a result. They understand the concept illustrated in another quote from Dr Sachs, to which we now turn.

The bipolarity index: how bipolar are you?

Medscape

: . . . It's not a categorical “yes” or “no”, you're bipolar or not, but rather, “To what extent are you bipolar?”

Dr Sachs

: Yes, and we're not looking to replace the

Diagnostic and Statistical Manual

with it. What we're trying to do is answer the patient's biggest question, “How likely is it that I have this disorder?” And it isn't that we're infallible, either; it's just that we are able to approach it more as a continuous issue, rather than as a black-and-white, yes-no.

1

This exchange indicates just how far the bipolar diagnostic paradigm has shifted-not toward replacing DSM, but toward thinking in spectrum as well as categorical terms. Dr Sachs is referring to a new instrument that is currently in use, among other tools, at the bipolar disorders clinic at MGH: the Bipolarity Index. This diagnostic tool, which is still being tested, awards 100 total points for 5 dimensions of bipolarity:

  • Episode characteristics (hypomania or mania).

  • Age at onset.

  • Illness course.

  • Response to medication.

  • Family history.

At present, each dimension is worth 20 points. As the tool is studied, these will likely acquire different weightings. For now, the index simply illustrates an interest in systematically gathering data regarding signs and symptoms other than hypomania or mania. It shows that Dr Sachs and colleagues are thinking in spectrum terms (as well as categorically). The index and the current scoring system are available for download, along with other tools used in the MGH clinic (via www.manicdepression.org), although Dr Sachs would likely emphasize how preliminary the work with this index remains at present.

Paper-and-pencil bipolar testing: MDQ or Bipolar Spectrum Diagnostic Scale (BSDS)?

A more widely studied aid for bipolar diagnosis is the MDQ. As most readers are likely to know, the MDQ presents a series of yes-or-no questions for the patient to answer, which involve the DSM criteria for hypomania/mania. The MDQ has become the de facto standard for bipolar screening, even though in some settings the sensitivity and specificity are not very reassuring, leading some authors to conclude that the test is not sufficiently accurate for use as a screening tool.9 However, it appears that a powerful determinant of its accuracy is the “hunch” of the user before the test-the “pretest probability.”10 Surprisingly, this has at least as much impact as the sensitivity and specificity on the predictive value of the test result. Thus, results from this test are only of value if the pretest probability can be estimated; otherwise, the risk of false positives, in particular, is dangerously high. Nevertheless, the test can still be used to educate people about bipolar disorder, and it can be a handy means of showing the patient his or her bipolarity from another angle. Unfortunately, the MDQ is being widely promulgated,11 often without these warnings about its accuracy.

Moreover, note that the MDQ-like the DSM-is a categorical instrument: it has been studied and designed for yielding a yes-or-no answer as to whether bipolar disorder is present. At high pretest probabilities (ie, when a skilled practitioner has a high index of suspicion), a positive MDQ result can raise post-test probabilities to about 90%.10

However, the MDQ, used in this way, reinforces the idea that bipolar disorder is either present or absent (a DSM-based categorical perspective). A more nuanced view is presented in another, less widely known questionnaire: the BSDS, originally developed by Ron Pies, MD.12 Probability of bipolar disorder is reported in 4 ranges, from “highly likely” to “very unlikely.” The test thus sends a message to patients that is consistent with the spectrum concept.

Unfortunately, neither test has been validated using BSDS-style probabilistic scoring. Determining a test's sensitivity and specificity requires using a yesor- no scoring system, for comparison with a gold standard. When evaluated in this way, using a cutoff scoring approach, the BSDS performs rather similarly to the MDQ.10 Unfortunately, evaluating it in this way obviates one of its primary advantages, namely the very spectrum perspective its name emphasizes.

For now, in my opinion, these tests are best used in 1 of 2 ways. First, they can be used as educational tools, to make a means of testing oneself easily accessible to the general public, and thereby raising awareness of and questions about bipolar disorder. The BSDS performs this role substantially better than the MDQ. Second, primary care providers (PCPs) can use them to save time.

Realistically, PCPs do not have adequate time for diagnostic interviews sufficiently thorough to “rule out hypomania,” as the DSM requires in order to establish the diagnosis of major depression. Recently, however, the FDA suggested that every patient who is to receive antidepressant medication be screened for bipolar disorder,13 a recommendation that now appears on every antidepressant package insert (not in the black box section at the top but in the warnings section about halfway through).

The FDA's recommendation is very nearly a requirement for action from a liability standpoint, so PCP screening for bipolar disorder has effectively been mandated. Since they are not being awarded any additional time or funding, and since most of them-in the Western United States, at least-find it very difficult to refer patients to psychiatrists because so few are taking new patients, the MDQ may be a very necessary tool in their practice. We psychiatrists might regard a cursory, yes-or-no analysis of bipolarity primitive, but unless we can help by taking the PCPs' patients, we may need to help them use the MDQ as effectively as possible.10

For skilled mental health practitioners, however, the MDQ and the BSDS have value primarily as a shorthand approach to accelerate interviewing. In that role, the HCL-32 may be superior.

The HCL-32: a laundry list of hypomanic symptoms

Did you ever wish you had a 1-page list of hypomanic symptoms and behaviors you could hand your patient, to review and discuss-one that would capture many of the variations you've seen in your practice? The HCL-32 was developed as an instrument for self-assessment, like the MDQ and BSDS, but it is much more thorough, with 32 different aspects of hypomania queried.14 As with any such test, it must be used by a skilled practitioner to derive a (at least intuitive, if not formally quantitative) post-test probability of bipolar disorder. However, as raw material for discussion, when degree of bipolarity remains in doubt, or as a list of symptoms that should arouse concern in scanning for future episodes of illness (eg, when an antidepressant is being introduced and when monitoring for hypomania is warranted), the HCL-32 is very handy. A 1-page symptom list version can be downloaded from the following site: http://www.psycheducation.org/depression/HCL-32.htm.

Mixed states as waves

Though it has not yet been subjected to validation testing, Mackinnon and Pies15 have put forth a striking new model of bipolar cycling. They suggest that mixed states can be understood, at least for some patients, as a product of cyclic changes in mood, energy, and speed of thought/creativity that are asynchronous, as shown in the upper portion of the Figure (see Psychiatric Times, August 2006, p. 87). In the lower portion, one can see that if a patient were to experience this kind of continuous fluctuation, his or her mood states would vary almost continually without clear demarcation of “episodes.” The patient's predominant experience would be a “mixed” mood state, yet full of variations-enough to leave him very uncertain of how he might feel and function on any given day, as we commonly hear from our patients. When I have shown this graph to patients, it seems to quickly shift their understanding of bipolarity from the classic mania/depression/ well-interval model to a continuousvariation model that often better matches their experience. This model deserves attention and study but is already a useful teaching instrument for conveying the spectrum of bipolar experience that can occur within a single patient.

Conclusion

Might using these tools (or the spectrum perspective in general) lead to overdiagnosis of bipolar disorder? Certainly the intent of this and my previous article has been to expand the diagnostic range in which bipolar disorder might be considered. As noted last month, the principle value of the spectrum concept is to add bipolarity to the differential of the apparently “unipolar” disorder even when a thorough search for hypomania has yielded little. This does indeed raise the risk of overdiagnosis.

One way to address the concern about swinging this pendulum too far is to set the bar high for treatment with any medication, emphasizing the use of exercise, psychotherapy, and other such nonpharmaceutical modalities before turning to therapies with greater risks. This will guard against overprescription, if not overdiagnosis. (As discussed last month, at least some of the worry about overdiagnosis may represent concern about the risks of mood stabilizers relative to antidepressants.)

“Overdiagnosis” presumes we have some way of knowing what “correct” diagnosis really means. Until we have biologic underpinnings or much better long-term outcome data for the conditions we treat, correct diagnosis will remain uncertain, and thus overdiagnosis will be impossible to assess. It may be that we are currently overdiagnosing bipolar disorder; it could also be that for decades it has been so dramatically underrecognized that a greater shift in diagnostic practices is indicated. We shall see. In the meantime, however, another paradigm shift is underway. The process of medical care is shifting from physician control of information and decision making toward a new model in which patients and their families actively seek information outside the doctor-patient relationship and play a more active role in diagnosis and treatment.16 For such clients, we may have to adjust our role toward guiding their education, including which diagnostic models and tools they might best use. I hope these articles help you prepare for that shift.

Dr Phelps has been practicing psychiatry for more than 15 years in Corvallis, Oregon and specializes in treating bipolar disorder. He recently published Why Am I Still Depressed? Recognizing and Managing the Ups and Downs of Bipolar II and Soft Bipolar Disorder (McGraw-Hill), a book version of his Web site (www.PsychEducation.org).

Dr Phelps reports that he has received grants and honoraria from GlaxoSmithKline, Astra- Zeneca, and Abbott Laboratories.

References

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