When “Adherence” Is A Dirty Word

January 16, 2012

Recently, I’ve been spending a lot of time reading the literature on “recovery” from mental illness.  Along the way, I’ve been introduced to the writings of Richard Warner and William Anthony, and peer-leaders in the field like Daniel Fisher and Pat Deegan.  Coincidentally, I also learned recently that my local county mental health system will start training patients and providers in Wellness Recovery Action Planning (“WRAP”), a peer-led illness self-management program which promotes autonomy and recovery.

In the interest of “evidence-based medicine,” the developers of WRAP have performed actual controlled trials of this intervention, comparing it to conventional mental health treatment.  In several studies, they have found that patients engaged in a WRAP program are typically more hopeful, more engaged in their recovery, and—quite surprisingly—have fewer psychiatric symptoms than those who are not.

One such paper was published just last month (pdf here).  The investigators showed that WRAP participants in public clinics throughout Ohio were more engaged in “self-advocacy” than patients who were not involved in WRAP, and that this led to improvements in quality of life and—consistent with their earlier studies—a reduction in psychiatric symptoms.  Their measure of “self-advocacy” was the Patient Self-Advocacy Scale (PSAS), “an instrument designed to measure a person’s propensity to engage in self-activism during health care encounters.”

Throughout the intervention, WRAP patients had a consistently higher PSAS score than others.  But their scores were particularly elevated in one subscale: “Mindful Non-Adherence.”

Non-adherence?  I must confess, I did a double-take.  If my years of training in modern psychiatry have taught me one thing, it is that adherence is a primary (yet elusive) goal in patients with serious mental illness.  In fact, the high rate of non-adherence has become the biggest sales pitch for new long-acting injectable antipsychotics like Invega Sustenna.

And now a paper is showing that non-adherence—i.e., the active refusal of medications or other suggestions from one’s doctor—is a good thing.  Really?

Intrigued, I looked more closely at the PSAS scale.  It was developed in 1999 by Dale Brashers of the communications department at the University of Illinois.  The scale was designed not to be a clinical tool, but rather a measure of how people manage interactions with their health care providers.  Their initial studies focused on patients in the HIV-AIDS community (e.g., in organizations like ACT UP) and health care communication patterns among patients who describe themselves as “activists.”

The PSAS scale includes three dimensions:  illness education, assertiveness, and “potential for mindful non-adherence.”  The first two are fairly self-explanatory.  But the third one is defined as “a tendency to reject treatments” or “a willingness to be nonadherent when treatments fail to meet the patient’s expectations.”  Four questions on the PSAS survey assess this potential, including #10: “Sometimes I think I have a better grasp of what I need than my doctor does” and #12: “I don’t always do what my physician or health care worker has asked me to do.”

In the WRAP study published last month, greater agreement with these questions—i.e., greater willingness to be nonadherent—resulted in a greater PSAS score.  I should point out that in a separate analysis, high non-adherence scores were not associated with better clinical outcomes, but education and assertiveness (and overall PSAS scores) were.  Nevertheless, when data suggest that patients might benefit from the active “defiance” of doctors’ orders, we physicians should take this seriously.

We can start by helping patients make reasoned treatment decisions.  The term “mindful non-adherence” implies that the patient knows something valuable, and that he or she is willing to act on this knowledge, against the wishes of the physician.  Few providers would admit that the patient has greater knowledge than the “expert” clinician.  After all, that’s why most of us engage in psychoeducation: to inform, enable, and empower our patients.

However, maybe the matters on which we “educate” our patients are ultimately irrelevant.  Maybe patients don’t want (or need) to know which parts of their brains are affected in psychosis, ADHD, or OCD, or how dopamine blockade reduces hallucinations; they just want strategies to alleviate their suffering.  The same may hold true for other areas of medicine, too.  As discussed in a recent article in the online Harvard Business Review, serious problems may arise when too much information is unloaded on patients without the guidance of a professional or, better yet, a peer who has “been there.”

Mental health care may provide the perfect arena in which to test the hypothesis that patients, when given enough information, know what’s best for themselves in the long run.  In a field where one’s own experience is really all that matters, maybe a return to patient-centered decision-making—what Pat Deegan calls the “dignity of risk” and the “right to failure”—is necessary.  At the very least, we physicians should get comfortable with the fact that, sometimes, a patient saying “no” may be the best prescription possible.

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