Studies show medication adherence in bipolar disorder is only about 40% to 45%, but this dangerous, progressive disease has a high suicide rate. Adherence is complicated by the fact that patients may miss the mild "high" that many associate with periods of creativity, says Kay Redfield Jamison, PhD.
Kay Redfield Jamison, PhD, understands why patients with bipolar disorder resist taking medication. The professor of psychiatry at Johns Hopkins School of Medicine resisted taking lithium herself to treat her own bipolar disease, which she has written about in her book An Unquiet Mind: A Memoir of Mood and Madness.
It’s not just the usual issues with side effects like weight gain, however. Jamison told attendees Friday at the 28th US Psychiatric and Mental Health Congress, being held in San Diego, California. First, medication adherence is an inherently human problem that is not limited to mental health, where it’s an especially big problem.
Second, therapies to control bipolar disorder eliminate the “high” that some with the disease feel fuels their creativity, propels their work, and is an essential part of their nature. Using medication to take away the dangerous parts of the disease, which make it impossible to hold a job or maintain relationships, can also dull their sense of who they are.
“Our major clinical problem is not that we don’t have good treatment,” Jamison said. “The problem is that people with bipolar disorder don’t take the treatments.” A review of 25 studies found that between 40% and 45% of patients with bipolar disorder do not take medication as prescribed; fortunately, she said, the Affordable Care Act is putting more resources into understanding this problem, since these patients account for a disproportionate share of patients who land in emergency rooms and drive up healthcare costs.
It’s Not Just Mental Health. Poor adherence is not limited to the mental health arena; it seems to be part of “human nature,” Jamison said. A study of patients exposed to anthrax in 2001 who were given ciprofloxacin found that only 61% to 64% of the patients in Washington, DC, and New Jersey took the medication as prescribed. Cardiologists and professionals who treat patients with diabetes constantly lament their inability to get patients to stick with proper diets, exercise, and medication routines, she said.
When it comes to bipolar disorder, those most at risk of poor adherence experience euphoria and grandiosity. “The people who are most likely to respond to lithium are those with euphoric, expansive grandiose mania–and they are also the people who are least likely to take it,” Jamison said.
Studies show it may take 2 to 4 hospitalizations for the reality to sink in that medication forever is the reality, not just something the doctor is recommending. A big challenge is the age of the patients involved–bipolar disorder first arrives in the late teens or young adulthood, at time of growing independence and risk-taking. (The average age of onset for bipolar I is 18.1 years; for bipolar II, it is 21.7 years.) The positive aspects of mild manic states also interfere with attempts to encourage good adherence, Jamison explained. The “high” patients experience is “as addictive as it gets, and people will do anything to recapture that,” she said.
Side effects are real, and physicians must balance each patient’s tolerance with the medication’s effectiveness. With lithium, for example, a study by Gelenberg,1 et al, showed that higher doses of 0.8 to 1.0 mmol per liter produced excellent symptom control but more side effects and poorer adherence rates, while doses of 0.4 to 0.6 mmol per liter resulted in fewer side effects and better adherence, but relapse rates were higher.
Jamison said that a period of depression often follows a psychotic episode; this is normal in the disease cycle, but patients often blame the medication. But the biggest problem by far is that patients stop medication once they feel better. “They see no point,” she said.
A Progressive, Dangerous Disease. Bipolar disorder is progressive, and “It has a very real impact on the brain,” Jamison said. Patients who don’t get treatment have very high rates of suicide.
“It can take 8 to 10 years for a good diagnosis–this is when denial is highest and suicide is most likely,” she said. Denial is common at the onset of the disease, because most patients and perhaps physicians will try to rule out other causes for behavior.
Statistics from Scandinavian countries, which do a better job at early intervention, show that suicide rates are much higher among patients who were not taking lithium. Suicide is also associated with attention-deficit hyperactivity disorder, low socioeconomic status, and alcohol or substance abuse.
What can clinicians do? “You really want to ask patients about their experience of highs,” Jamison said. The euphoria of the disease should not be romanticized, but it must be acknowledged so that the patient is taken seriously, she said.
Patients and family members must also be given a clear picture of what’s ahead of they fail to take medication. Parents, in particular, can be “hugely important or actively undermining,” in their response. It’s important to encourage patients to take medication and get regular psychotherapy, she said.
Bipolar disease is not new, Jamison noted. It may have been called other things over the centuries, but “Hippocrates described mania and melancholia. The Chinese were diagnosing it, and had criteria.” The difference, of course, was the absence of therapy.
“We know what happens to people if they don’t get treatment, and it isn’t good.”
1.Â Â Â Â Â Â Gelenberg A, Kane JM, Keller MB, Lavori P, Rosenbaum JF, Cole K, Lavelle J. Comparison of standard and low serum levels of lithium for maintenance treatment of bipolar disorder. N Engl J Med. 1989;321(22):1489-1493.