Educating Patients About Bipolar Disorders
Educating Patients About Bipolar Disorders
Teaching patients is a central role for physicians, and it is especially important in chronic illnesses, such as bipolar disorder. For an illness in which misunderstanding of the condition is the norm and in which patients often do not follow treatment recommendations, it is clear that psychoeducation leads to substantially better outcomes.1
What does a typical patient with newly diagnosed bipolar disorder know about his or her illness? Most likely very little—and what he thinks he knows may be working against you.
• I haven’t had a manic episode, so this diagnosis must not be correct
• They just want me to take handfuls of pills
• Lithium will make my kidneys fail/make me feel like a zombie/make me gain weight/etc
• I’ll never be well again/get a job/live on my own/get married/etc
• I’m better now; I don’t need to keep taking these medications
A new diagnosis of bipolar disorder is like a new diagnosis of diabetes mellitus. The patient’s world changes, or should change, and there is a vast amount to learn . . . more than a busy clinician alone can teach. In addition to using efficient teaching resources, you must strive to teach your patients how to learn about the illness on their own, rather than wait for someone to teach them—otherwise, bipolar disorder itself may be the teacher.
Fortunately, the clinician also benefits from this emphasis on patient education. One of the most frustrating experiences in your work is a patient’s failure to follow through on treatment recommendations, particularly when the result is another mood episode that you are expected to manage. Improved adherence and recognition of early symptoms can prevent some of these episodes. Moreover, improved adherence to treatment recommendations is likely to improve the overall treatment alliance, making your job more satisfying and maybe even a little easier.
Doctor (noun, from Latin docere): “To show, teach, cause to know.”
Although patients have a nearly infinite variety of questions, some issues are common to nearly everyone with bipolar disorder.2 Patients who have learned about these fundamentals have strikingly better outcomes than those who spent the same amount of time in a non-directive support group with experienced therapists.3,4 In a remarkable study from Barcelona, Spain, all patients started out well but unfortunately relapsed over time (Figure).4 But relapse rates were significantly lower among those who received education, not just support. As shown in the Figure, the separation between treatment and control groups is maintained 5 years later.4
Table 1 lists the 21 group sessions (9 or 10 patients per group) in the Barcelona program. The well-organized manual for these sessions is available in English.5 In it, not only do the authors explain how each session is introduced, how they presented the material, and what handouts they used, but they also address potential pitfalls and even provide some of the amusing jokes they told in each session. This is a complete guide that even a less than fully experienced professional could use to repeat their exemplary work.
You may not be working in a setting where the efficiency of groups outweighs the complexity of organizing them (if you have done it, you know what this means). If not, how can you provide these basics without exhausting yourself, repeating the same material over and over with individual patients?
You must first consider how each patient learns best. Some are verbal learners: they will understand your verbal explanation of the eicosapentaenoic acid (EPA)/omega-3 ratio (must be greater than 60%, per a recent meta-analysis6). Visual learners will need to see the bottle and have you show them how to find EPA on the ingredients list. The learn-by-doing group will not really get it until they have gone to the store with your instructions and done it themselves.
When suggesting additional resources, make sure they are realistic for that particular patient. Does this patient like to read books? Does he have the money for the book you suggest? Can he handle going into a bookstore to buy it, or is his social avoidance likely to prevent that? If you are recommending a Web site or video, does your patient have access to an online computer? Is he comfortable using it?
What is already known about tools available for patient education in bipolar disorder? ? Thanks to researchers in Barcelona, Spain; Cardiff, Wales; and elsewhere, it is clear that patient and family education leads to improved outcomes.
What new information does this article provide? ? This article provides a review of some of the educational tools available for patients with bipolar disorder, from books to Web sites to video programs.
What are the implications for psychiatric practice? ? Every patient with a diagnosis of bipolar disorder should have access in some way to the kinds of information originally shown in Barcelona, Spain, to produce such dramatically improved outcomes. The challenge is to determine how that can be done in a busy practice. The tools reviewed here can help.
For your patients who learn well from reading a book, there are many to choose from. (Remember books? Those paper things with tables of contents, indexes, and easily recognized chapters?) The following selections represent only those that I use; there are surely others that might work as well. Ask your colleagues what books they have found effective. At least one title will likely appear on most of their lists: the Bipolar Disorder Survival Guide: What You and Your Family Need to Know.7 This covers most of the material in the Barcelona group education program and also places an emphasis on the family’s role in preventing relapse, effectively introducing family-focused therapy, a proven treatment that emphasizes patient education.8
A similar “basics” presentation is Mondimore’s Bipolar Disorder: A Guide for Patients and Families.9 While their families read one of these guides, late adolescent and young adult patients can read Federman and Thomson’s Facing Bipolar: The Young Adult’s Guide to Dealing With Bipolar Disorder, an excellent introduction to bipolar disorder for those who have just been given the diagnosis.10
Most of your patients are or will be struggling in their personal relationships, and the security of those relationships strongly affects mood stability. A book that would be very beneficial for these patients is Loving Someone With Bipolar Disorder: Understanding & Helping Your Partner (the second edition is currently in preparation).11
Ask patients what they have found useful. Many find the big-picture view of bipolarity in Kay Jamison’s An Unquiet Mind: Memoir of Moods and Madness helpful.12 But be careful: Jamison’s memoir describes bipolar I. This is not a book to recommend for patients with bipolar II, for whom it might fuel thoughts of “I don’t have bipolar disorder.” For patients with bipolar I, a very funny but very accurate account of the bipolar experience is Hilary Smith’s Welcome to the Jungle: Everything You Ever Wanted to Know About Bipolar but Were Too Freaked Out to Ask.13 The style is a modern 20-year-old’s, but the wisdom is akin to Kay Jamison’s.
Where should you send your patients on the Web? Hopefully, they are savvy enough to avoid the top advertisement links if they search “bipolar disorder.” Although each of the commercial sites presents general information about bipolar disorder, once one arrives at the treatment section, the company drug is prominently featured. Some patients and families might need to be warned about this.
An excellent introduction for patients is available from the Bipolar Education Program in Cardiff, Wales.14 Each of 14 topics, very similar to the Barcelona outline (Table 1), is addressed with “Ten Top Messages” (one-liners). This represents a basic curriculum, in outline, with which all patients with bipolar disorder should be familiar.
For families and significant others who might be overwhelmed when looking at this information on their own, a nicely paced video program has also been developed by the Cardiff team.15 The program is systematic, gentle, and sticks to basics. More education will be needed afterward, but this video approach offers an excellent introduction for families and significant others who will not likely learn on their own with just the books.
The majority of patients with bipolar disorder have bipolar II (1-year prevalence 0.8% vs 0.6% for bipolar I; with an additional 1.4% who have “subthreshold” manic symptoms, akin to bipolar NOS [not otherwise specified]16). Information on most Web sites typically begins with a definition of bipolar disorder as a distinct illness based primarily on manic symptoms. Since bipolar II and NOS by definition do not meet criteria for mania, this information can worsen diagnostic understanding rather than improve it.
A book specifically for patients with bipolar II or NOS is Why Am I Still Depressed? Recognizing and Managing the Ups and Downs of Bipolar II and Soft Bipolar Disorder.17 This is a condensed version of a Web site on non-manic bipolar variations, www.PsychEducation.org. Since we know that patients correctly remember only about half of what they hear in the office,18 Web sites such as this can be used to expand and review information you provide directly to patients and families. After a brief explanation using the relevant graphics or links (spinning your laptop to face them), you can print the first page to help them find their way back to it on their computer, or you can send the link via secure e-mail. At home, patients are free to read the same material several times at their own speed to fully digest the information. www.PsychEducation.org includes extensive hyperlinked references (eg, article abstracts) and expanded explanations, so that patients who want to know more or question the source of the information can pursue additional detail.
The broad outline of information on www.PsychEducation.org is similar to that of the Barcelona and Cardiff programs, but it is untested, since no randomized or open trials have been conducted. However, hundreds of e-mails have attested to its utility. It is free and requires no clinician involvement, and it is focused primarily on non-manic bipolar variations (the ones that take the most time to explain). Most important, it offers far more detail than the above-mentioned approaches. The outline from the Diagnosis page is shown in Table 2.
An engaging interactive program about the basics of bipolar disorder has been developed, again by the Cardiff University group.19 In their initial trial of this approach, 8 modules were delivered online every 2 weeks over a 4-month period, covering most of the topics in the Barcelona program. There was an initial face-to-face introductory meeting led by a consultant psychiatrist to demonstrate how to use the program. Thereafter, participants logged on to the Web site and completed the modules. Throughout the trial, there was an opportunity for participants in the intervention group to discuss the content of the material with each other. This was done within a secure discussion forum moderated by a bipolar specialist.
Patients in the program did not show major improvement compared with patients who received treatment as usual, but the sample was small, the follow-up period short, and the primary outcome measure (quality of life) difficult to improve.20 Note that unlike the group education program in Barcelona, which was 21 two-hour sessions with direct group interaction, the Cardiff approach was effectively only 8 sessions, less detailed, and interpersonally indirect. However, their program, now that it has been assembled, is far easier to deliver than the Spanish version. In the United Kingdom, it is available through the Manic Depression Fellowship.21 Extension to other countries, perhaps through similar mechanisms, is being considered.
You know how much time it takes to explain the complexities faced by a woman with bipolar disorder who is considering pregnancy. An excellent video introduction to this issue is available from the Bipolar Education Program in Cardiff.22 It presents basic information regarding the following questions:
• Does childbirth carry risks for women with bipolar disorder?
• Is it safe to take medications when pregnant or breast-feeding?
• If bipolar disorder is genetic, what are the risks my children will get it?
This video does an excellent job outlining these important questions, but stops carefully short of answering them or providing direct advice. After watching it, your patient will know the right questions to ask to create a personalized approach to treatment during pregnancy and postpartum.
Patients with bipolar disorder need a great deal of information about the illness. Without this education, adherence to your recommendations is uncertain; with it, outcomes will likely be better (and your job easier).
Emphasize the benefits of understanding the illness (eg, use the experience of others to avoid having to learn the hard way). Outline the body of knowledge needed and reinforce taking responsibility for learning it (teaching to fish for oneself, not wait for fish from parents or therapists). Anticipate lapses in medication adherence and strive to reach agreement, in advance, on how that will be handled.
Identify what educational strategies are most likely to be effective for each patient. Ask patients what they have done so far and how they learn best (hands on, visual, verbal). Make sure that your recommendations are realistic for each patient (eg, cost, time, Internet access).
Supplement your in-office teaching. Prepare a handout with recommended books and Web sites; link them to your Web site, if you have one. Keep a copy of the books you recommend in your office, and use them (eg, show the table of contents, make them palpable). Consider buying books to lend or give away, if possible. Request that patients view or read specific materials and then follow up: ask them if they had any difficulty in accessing or using those materials, and what they learned. If practical, offer a bipolar education group.5 Teach patients to learn on their own.
References1. Velligan DI, Weiden PJ, Sajatovic M, et al; Expert Consensus Panel on Adherence Problems in Serious and Persistent Mental Illness. The expert consensus guideline series: adherence problems in patients with serious and persistent mental illness. J Clin Psychiatry. 2009;70(suppl 4):1-46.
2. Phelps J, Plyler B. BipolarWorld: Ask the Doctor. http://www.bipolarworld.net/Phelps/topicarchive.htm. Accessed December 9, 2011.
3. Colom F, Vieta E, Martinez-Aran A, et al. A randomized trial on the efficacy of group psychoeducation in the prophylaxis of recurrences in bipolar patients whose disease is in remission. Arch Gen Psychiatry. 2003;60:402-407.
4. Colom F, Vieta E, Sánchez-Moreno J, et al. Group psychoeducation for stabilised bipolar disorders: 5-year outcome of a randomised clinical trial [published correction appears in Br J Psychiatry. 2009;194:571]. Br J Psychiatry. 2009;194:260-265.
5. Colom F, Vieta E. Psychoeducation Manual for Bipolar Disorder. New York: Cambridge University Press; 2006.
6. Sublette ME, Ellis SP, Geant AL, Mann JJ. Meta-analysis of the effects of eicosapentaenoic acid (EPA) in clinical trials in depression. J Clin Psychiatry. 2011 Sep 6; [Epub ahead of print].
7. Miklowitz DJ. The Bipolar Disorder Survival Guide: What You and Your Family Need to Know. 2nd ed. New York: Guilford Press; 2011.
8. Miklowitz DJ, George EL, Richards JA, et al. A randomized study of family-focused psychoeducation and pharmacotherapy in the outpatient management of bipolar disorder. Arch Gen Psychiatry. 2003;60:904-912.
9. Mondimore FM. Bipolar Disorder: A Guide for Patients and Families. 2nd ed. Baltimore: The Johns Hopkins University Press; 2006.
10. Federman R, Thomson JA Jr. Facing Bipolar: The Young Adult’s Guide to Dealing With Bipolar Disorder. Oakland, CA: New Harbinger Publications, Inc; 2010.
11. Fast JA, Preston JD. Loving Someone With Bipolar Disorder: Understanding & Helping Your Partner. Oakland, CA: New Harbinger Publications, Inc; 2004.
12. Jamison KR. An Unquiet Mind: Memoir of Moods and Madness. New York: Vintage Books; 1995.
13. Smith H. Welcome to the Jungle: Everything You Ever Wanted to Know About Bipolar but Were Too Freaked Out to Ask. San Francisco: Red Wheel/Weiser, LLC; 2010.
14. Bipolar Education Program. Resources. http://www.bep-c.org/?page_id=34. Accessed December 9, 2011.
15. Bipolar Education Program. Bipolar Disorder for Partners, Families and Carers. http://www.beatingbipolar.org/families_and_carers. Accessed December 9, 2011.
16. Merikangas KR, Akiskal HS, Angst J, et al. Lifetime and 12-month prevalence of bipolar spectrum disorder in the National Comorbidity Survey replication [published correction appears in Arch Gen Psychiatry. 2007;64:1039]. Arch Gen Psychiatry. 2007;64:543-552.
17. Phelps J. Why Am I Still Depressed? Recognizing and Managing the Ups and Downs of Bipolar II and Soft Bipolar Disorder. New York: McGraw-Hill; 2006.
18. Kessels RP. Patients’ memory for medical information. J R Soc Med. 2003;96:219-222.
19. Barnes E, Simpson S, Griffiths E, et al. Developing an online psychoeducation package for bipolar disorder. J Ment Health. 2011;20:21-31.
20. Smith DJ, Griffiths E, Poole R, et al. Beating bipolar: exploratory trial of a novel internet-based psychoeducational treatment for bipolar disorder. Bipolar Disord. In press.
21. Manic Depression Fellowship. http://www.mdf.org.uk. Accessed December 9, 2011.
22. Bipolar Education Program. Pregnancy and Childbirth in Women With Bipolar Disorder. http://www.beatingbipolar.org/women_and_bipolar. Accessed December 9, 2011.