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31. Illness Insight and Antipsychotic Medication Adherence
Keywords
InsightAntipsychotic adherenceDrug attitudeEssential Concepts
Insight into illness is neither necessary nor sufficient for adherence to medications.
Illness insight is not a simple, all-or-nothing concept but is multidimensional: awareness of symptoms, acknowledgment of illness, and acceptance of need for treatment.
Some patients have an anosognosia-like neurological deficit in recognizing that they are psychiatrically ill and could benefit from psychiatric treatment.
The health belief model posits that patients who judge themselves at risk for a disease weigh the risks, benefits, and costs of intervening medically. Importantly, this calculation is made from the patient’s point of view, not yours.
Effectiveness of medicine is driven by its efficacy; nobody likes to take ineffective or marginally effective medications, particularly if there are many side effects.
To assess antipsychotic medication adherence, you need to assess both (drug) attitude and (compliance) behavior. Drug attitude sums up a patient’s subjective risk-benefit assessment of a medication. A good drug attitude predicts adherence unless there are barriers like cost.
Both patients and their physicians confidently overestimate the degree of antipsychotic adherence; be aware of this bias and use collateral and objective information about actual adherence.
Adherence-enhancing interventions can be grouped into universal (applied to all patients, regardless of risk), selective (applied to those at risk of nonadherence), and indicated (applied to those not taking antipsychotics). The choice of your interventions is also determined if nonadherence is intentional or inadvertent.
“The desire to take medicine is perhaps the greatest feature which distinguishes man from animals.” [1]
– Sir William Osler, father of modern medicine, 1849–1919
Poor adherence to potentially quite effective medications is not a specific problem for psychiatry but a challenge for all of medicine, particular for chronic conditions [2]. Apparently, the great Osler had it wrong. Nonadherence to antipsychotics is a clinical problem in at least 50% of all patients with schizophrenia [3]. In one study that followed patients after hospital discharge, only about 20% of patients had persisted with taking medications after 6 months [4]. First-episode patients who have much to lose from poor adherence often stop medications as early as immediately after hospital discharge [5]. Nonadherence is not limited to antipsychotics but extends to medications to manage chronic medical conditions such as antihypertensive medications [6]. In schizophrenia, adherence to antipsychotics is one of the most important determinants of prognosis. Recognizing medication adherence problems and identifying reasons for nonadherence are therefore important considerations in the treatment of patients with schizophrenia. Note that “adherence” is now generally preferred over the older, more paternalistic term “compliance.”
Families frequently ask for “more therapy” for a nonadherent family member, revealing two incorrect assumptions about the connection between insight and adherence: (1) that insight is necessary and sufficient for adherence and (2) that insight is a function of the amount of treatment provided (and hence can increase if only enough treatment is given). Unfortunately, insight does not necessarily translate into adherence; and lack of insight sides comfortably with excellent adherence. I will discuss insight and adherence in two separate sections in order to not conflate them, like families often do.
Key Point
“Lack of insight” poses one of the biggest obstacles to the treatment of schizophrenia. However, the reverse is not correct: a good understanding of one’s illness and the proposed treatment is neither necessary nor sufficient for anyone to take medications.
Insight into Illness
Clinicians who treat patients with schizophrenia are well aware of the vexing clinical problem of “lack of insight” in schizophrenia. “Lack of insight” has many clinical facets. Patients insist on delusional ideas despite evidence to the contrary; they may be unaware of abnormal movements like tardive dyskinesia [7]; and they can show a striking unawareness how they get across in social situations (deficits in comportment). In a seminal World Health Organization (WHO) study of schizophrenia, a key finding was that “lack of insight” was the most useful clinical feature in distinguishing schizophrenia from other mental disorders [8]. Consequently, much work has been dedicated to better understand the nature of this lack of insight. Clearly, insight into illness is not the simple shorthand “patient has no insight” that psychiatrists sometimes use to describe patients, particularly patients who disagree with treatment recommendations, which usually means not wanting to take an antipsychotic. Some patients might very well agree with you that they suffer from a mental illness and that they have symptoms, but they do not see medications as the solution. The acceptance of need for treatment and type of treatment, in particular, is shaped by cultural expectations and a person’s Weltanschauung (German for world view).
Awareness of symptoms – ability to recognize inner experiences or observations as abnormal
Acknowledgment of illness – ability to see oneself as suffering from an illness
Acceptance of need for treatment – ability to acknowledge that treatment could be useful, particularly to prevent relapse
Tip
To assess insight as it relates to taking antipsychotics, I focus on acknowledgment of illness and need for treatment: “Do you have any mental health problems? Do you need any treatment for mental health problems? Do your medications do you any good?” (Adapted from the Insight into Treatment Attitude Questionnaire, or ITAQ, developed by Dr. Joseph McEvoy [12].)
An important question is whether you can improve insight into illness. Some would say that psychosis (particularly delusions) by definition has an element of lack of insight built into the definition. However, patients who are just relapsing or patients in the prodrome of schizophrenia are often able to recognize that something is wrong (abnormal perceptions or attenuated psychosis) and seem have at least partial insight. Some patients are aware that “they are losing it.” Allowing for doubt into the veracity of one’s experiences and observations is also the basis for cognitive-behavioral therapy for psychosis. Unfortunately, this capacity to self-observe and reflect gets lost once patients develop full-blown psychosis or mania. Unpleasant affect like depression adds to the ability to have insight, akin to pain as a warning that something is wrong [13]. That said, clinicians are familiar with a group of patients who seem fundamentally unable to critically examine their experiences. This inability to recognize themselves as somebody with symptoms (suggesting an illness) has been compared to the anosognosia of neurology [14]. Such a neurological deficit would be akin to neglect syndromes or the unawareness about their illness that Alzheimer’s patients in later disease phases show. Some studies suggest that lack of insight is not just a metaphor but a true neuropsychiatric deficit [15] that you would not expect to be remedied by talking. However, in some patients, “denial” as a psychological mechanism is probably operative [16], where ongoing conversation can lead to improved insight. The trick of course is to not confuse one with the other, and accept that both (and other views about what insight is and how we create it) are not mutually exclusive.
I find it helpful to view insight into having a serious psychiatric disorder as something that has to be learned (“constructed”), often painfully, through trial and error (and often not entirely voluntary [17]), a view consistent with the narrative view of insight. Psychologically, some “Leidensdruck” (a German word describing the sense of being compelled to act to alleviate suffering) may be necessary for initiating the process of trying a medicine to learn how it may help [13]. Leidensdruck may be overwhelming affects or a more cognitive appraisal that things are not going well. Manic patients lack insight into the need to change anything or take medications because there is no Leidensdruck, quite the contrary.
Medication Adherence
It is the rare patient who in fact “nonadherent” to all aspects of treatment. I treat patients who see me regularly for their appointments but just do not want to take antipsychotics. Others miss their appointments regularly but always call on time to have their medications refilled by the pharmacy. Thus, be clear what you mean if you describe somebody as “nonadherent.” For this chapter, the emphasis will be on antipsychotic medication adherence.
Reasons for Poor Medication Adherence
Factors that contribute to poor antipsychotic adherence
Poor symptom controla |
Medication side effects |
Complicated medication regimen |
Impaired judgment and insight |
Substance use |
Real-life, pragmatic problems (money, transportation) |
Stigma associated with schizophrenia |
Poor therapeutic alliance |
Wishful thinking |
Often, you will be able to identify one main obstacle to better adherence. I suggest you look at three key determinants of nonadherence: healthcare access problems, neuropsychiatric and cognitive deficits, and health belief models [18].
Healthcare Access Problems
Start with the obvious: an important group of patients takes less medication than prescribed not because of ill will but because the patients have no money or because they could not get transportation or for a host of other real-life reasons. Healthcare is simply not the most important of their many pressing needs. It makes no sense to give patients a prescription they cannot afford. Simply ask, “Can you get this prescription filled today?” Inpatient teams bear some responsibility to assure that a medication started in the hospital will be covered on the outpatient side.
Neuropsychiatric and Cognitive Deficits
Cognitive psychologists differentiate between competence and performance: competence is the potential ability to do something; performance refers to the actual behaviors. Competence is the prerequisite for good performance. Hence, make sure that your patient is not too impaired (i.e., has the competence) to actually implement your recommendations. You need to take into account education and ability to think in abstract terms when you explain your plan. Anticipate problems and recognize that your patient might not be able to problem-solve flexibly. An example would be to receive a different looking medication than what he is used to because of a change in medication supplier. Problems in the cognitive realm should become obvious when you ask the patient to repeat your medication plan: “Tell me again, how are you going to take the medications?”
Health Belief Model
Key Point
According to the health belief model, patients weigh the perceived benefits of treatment with the perceived risks and costs of treatment, taking into account perceived vulnerability for the condition in question [19]. Not that is it risks, costs, and benefits from the patient’s point of view, not yours.
One prediction from the health belief model is that patients will discontinue medications that they perceive as not working, that seem to have too many side effects compared to the benefits, or that are not deemed necessary to begin with. Note that it is the balance of efficacy and side effects not simply lack of side effects that determines adherence in this model: patients with cancer risk dying from their treatment because of the possible benefit. Quality of life concerns are often in opposition to efficacy considerations, particularly during maintenance treatment when patients have to decide if the present side effect burden is worth the theoretical relapse risk [20]. A second prediction from the health belief model is that a patient’s viewpoint can run counter to society’s views: a psychotic patient rejects treatment for fear of side effects, even though society can feel compelled to involuntarily treat or confine the patient for reasons of safety. Some patients are better viewed as holding “dysfunctional health beliefs” than having “no insight” [21]. You can address dysfunctional health beliefs by providing information and education in order to have patients reconsider their stance.
Assessment of Medication Adherence
In order to use medications optimally, you need to understand which medications are taken and if they are taken as prescribed (and the reasons for any deviation from the treatment plan). A careful assessment of medication adherence is a critically important task for any patient you are prescribing medications for [22]. Medication reconciliation often stops at a mere listing of the prescribed medications, without trying to gauge how much is actually taken. Studies have shown that psychiatrists routinely overestimate how much of their medications patients are taking (a typical case of “we are all above average”) [23]. Interestingly, patients similarly confidently overestimate their degree of adherence; I think this an honest overestimation, not an attempt to deceive. Be aware of this bias.
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