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..
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:
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.