Anosognosia is major reason why some individuals with severe psychiatric disorders often do not take their medications
INTRODUCTION The failure of individuals with schizophrenia and bipolar disorder to take prescribed medications (usually antipsychotics and/or mood stabilizers such as lithium) is one of the most serious problems in psychiatric care. It often leads to relapse of symptoms, rehospitalizations, homelessness, incarceration in jail or prison, victimization, or episodes of violence. The failure to take medication is referred to as noncompliance or nonadherence; the latter is a better term.
Nonadherence is also a problem for other medical conditions for which medication must be taken for long periods, including hypertension, diabetes, epilepsy, asthma, and tuberculosis. Nonadherence may be total but is more often partial; it has been suggested that partial adherence be defined as a failure to take 30 percent or more of the prescribed medication during the past month. Scott J, Pope M. Nonadherence with mood stabilizers: prevalence and predictors. Journal of Clinical Psychiatry 63:384–390, 2002.
55% of individuals not taking medication did so because they did not believe they were sick (anosognosia)
The single most significant reason why individuals with schizophrenia and bipolar disorder fail to take their medication is because of their lack of awareness of their illness (anosognosia). Other important reasons are concurrent alcohol or drug abuse; costs; and a poor relationship between psychiatrist and patient. Medication side effects, widely assumed to be the most important reason for medication nonadherence, are in fact a less important reason compared to the other factors cited.
The single best study of why individuals with severe psychiatric disorders do not take medication was done by Kessler et al. (The prevalence and correlates of untreated serious mental illness, Health Services Research 36:987–1007, 2001). In interviews with those not taking medication, the single most common reason, cited by 55 percent of the individuals, was that they did not believe they were sick. They had anosognosia.
The Kessler et al. study thus contradicts claims that many individuals with serious mental illnesses do not seek treatment because of fears of involuntary hospitalization, stigma, or dissatisfaction with available services. It is commonly claimed that “if you make the psychiatric services attractive enough and culturally relevant, then individuals with serious mental illnesses will utilize them.” This appears to not be true. Very few individuals cited “not satisfied with available services,” “could not get appointment,” “language problem,” etc., as a reason why they were not in treatment. The greatest reason for nontreatment by far was the person’s lack of awareness of their illness. Such individuals will not voluntarily utilize psychiatric services, no matter how attractive those services are, because they do not believe that they have an illness.
In a review, 10 of 14 studies that examined lack of awareness of illness and medication nonadherence in schizophrenia reported that the two are strongly associated.
Lacro J, Dunn LB, Dolder CR et al. Prevalence of risk factors for medication nonadherence in patients with schizophrenia: a comprehensive review of recent literature. Journal of Clinical Psychiatry 2002;63: 892–-909.
The other four studies were carried out in countries in which there is a very high rate of patient adherence to medications (e.g., Ireland, 80 percent adherence) because most patients still do whatever the doctor tells them to do; this high adherence rate makes it difficult to measure the effects of lack of awareness.
Garavan J, Browne S, Gervin M et al. Compliance with neuroleptic medication in outpatients with schizophrenia; relationship to insight, subjective response to neuroleptics and attitudes to medication [abstract]. Schizophrenia Research 1997’24:264–265.
Other studies have also reported a strong association between lack of awareness and medication nonadherence.
Nosé M, Barbui C, Tansella M. How often do patients with psychosis fail to adhere to treatment programmes? A systematic review. Psychological Medicine 2003;33:1149–1160.
Mutsatsa SH, Joyce EM, Hutton SB et al. Clinical correlates of early medication adherence: West London first episode schizophrenia study. Acta Psychiatrica Scandinavica 2003;108:439–446.
For example, a study of 218 outpatients reported that the correlation between awareness of illness and adherence with medication was highly statistically significant (p<0.007).
Trauer T, Sacks T. The relationship between insight and medication adherence in severely mentally ill clients treated in the community. Acta Psychiatrica Scandinavica 2000;102:211–216.
When impaired awareness of illness is compared with other reasons for medication nonadherence, it is invariably found to be the single most important reason.
Faruqui RA, Andrews MD, Oyewole R et al. Clinical correlates of adherence to antipsychotic treatment in pre-discharge patients with schizophrenia [abstract]. Schizophrenia Research 2003;60:322.
This is true for individuals with bipolar disorder as well as for those with schizophrenia. Keck PE, McElroy SL, Strakowski SM et al. Compliance with maintenance treatment in bipolar disorder.
Psychopharmacology Bulletin 1997;33:87–91. Greenhouse WJ, Björn M, Johnson SL. Coping and medication adherence in bipolar disorder. Journal of Affective
- Other reasons for not taking medication were cited much less frequently:
- 7% “scared about hospitalization against own will”
- 6% “concerned about what others might think”
- 5% “not satisfied with available services”
- 1% “could not get an appointment”
- 0% “language problem”
This study thus contradicts claims that many individuals with serious mental illnesses do not seek treatment because of fears of involuntary hospitalization, stigma, or dissatisfaction with available services.
It is commonly claimed that “if you make the psychiatric services attractive enough and culturally relevant, then individuals with serous mental illnesses will utilize them.” This appears to not be true. Very few individuals cited “not satisfied with available services,” “could not get appointment,” “language problem,” etc., as a reason why they were not in treatment. The greatest reason for non-treatment by far was the person’s lack of awareness of their illness. Such individuals will not voluntarily utilize psychiatric services, no matter how attractive those services are, because they do not believe that they have an illness.
Following is info on some of the other studies
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0 percent “language problem”
Concurrent alcohol or drug abuse
The second most important reason for medication nonadherence in individuals with severe psychiatric disorders is concurrent substance abuse. This association has been reported in at least 10 studies (Lacro et al., op cit.).
Kamali M, Kelly L, Gervin M et al. Insight and comorbid substance misuse and medication compliance among patients with schizophrenia. Psychiatric Services 2001;52:161–163.
Hunt GE, Bergen J, Bashir M. Medication compliance and comorbid substance abuse in schizophrenia: impact on community survival 4 years after a relapse. Schizophrenia Research 2002;54:253–264.
Hudson TJ, Owen RR, Thrush CR et al. A pilot study of barriers to medication adherence in schizophrenia. Journal of Clinical Psychiatry 2004;65:211–216.
Lang K, Meyers JL, Korn JR et al. Medication adherence and hospitalization among patients with schizophrenia treated with antipsychotics. Psychiatric Services 2010;61:1239–1247.
Lambert M, Conus P, Cotton S et al. Prevalence, predictors, and consequences of long-term refusal of antipsychotic treatment in first-episode psychosis. Journal of Clinical Psychopharmacology 2010;30:565–572.
Hill M, Crumlish N, Whitty P et al. Nonadherence to medication four years after a first episode of psychosis and associated risk factors. Psychiatric Services 2010;61:189–192.
Novick D, Haro JM, Suarez D et al. Predictors and clinical consequences of non-adherence with antipsychotic medication in the outpatient treatment of schizophrenia. Psychiatry Research 2010;176:109–113.
In one such study it was found that “substance-abusing patients with schizophrenia were 13 times more likely than non-substance-abusing patients to be noncompliant with antipsychotic medication.”
Kashner TM, Rader LE, Rodell DE et al. Family characteristics, substance abuse, and hospitalization patterns of patients with schizophrenia. Hospital and Community Psychiatry 1991;42:195–197.
Among the reasons for this association is the fact that psychiatrists often tell patients to not drink alcohol when on medication (they therefore stop medication so they can drink) and the fact that some medications counteract the effects of the alcohol or drugs (so the person cannot experience their desired high).
Poor relationship between psychiatric staff and patients
Every study that has examined this has found a poor relationship between psychiatric staff and patients to be a factor in patients’ nonadherence to medications (Lacro et al., op cit.). It is often referred to as a poor therapeutic alliance. Such relationships include psychiatrists, psychologists, nurses, social workers, and psychiatric aides in both inpatient and outpatient units. It involves things such as taking the time to listen to patients, treating them with respect, explaining things to them, and involving them in treatment decisions insofar as this is feasible.
Day JC, Bentall RP, Roberts C et al. Attitudes toward antipsychotic medication. Archives of General Psychiatry 2005;62:717–724, 2005.
Medication side effects
This is often cited as the most important reason individuals with schizophrenia and bipolar disorder fail to take their medications. Studies, however, suggest that it is a much less important reason than the three reasons discussed above. In one review, only 1 out of 9 studies found a significant association between side effects and medication adherence in individuals with schizophrenia (Lacro et al., op cit.). Another study concluded that “adverse effects may have less influence on [medication] adherence than is currently presumed” (Day et al., op cit.).
Other factors known to contribute to medication nonadherence in individuals with schizophrenia and bipolar disorder include cost of medication, no improvement in symptoms, confusion, depression, lack of access to medication because of being homeless or in jail, and (for individuals with bipolar disorder) purposeful stopping of medication because they enjoy being manic.
Anosognosia Keeps PatientsFrom Realizing They’re Ill
Psychiatric News Sept., 7, 2001 Volume 36 Number 17, p. 13, Professional News
A growing body of evidence points to the fact that for many people with serious mental illness, lack of insight is a medically based condition. About half of the people with schizophrenia and bipolar disorder may not be getting the treatment they need because of a brain deficit that renders them unable to perceive that they are ill, according to one expert.
Xavier Amador, Ph.D.: “People will come up with illogical and even bizarre explanations for symptoms and life circumstances stemming from their illness.”
Anosognosia, meaning “unawareness of illness,” is a syndrome commonly seen inpeople with serious mental illness and some neurological disorders, according to XavierAmador, Ph.D., who spoke at the 2001 convention of the National Alliance for the MentallyIll in Washington, D.C., in July.
People with this syndrome do not believe they are ill despite evidence to the contrary,said Amador, who is director of psychology at the New York State Psychiatric Institute andprofessor of psychology in the department of psychiatry at Columbia University College ofPhysicians and Surgeons. “People will come up with illogical and even bizarre explanations for symptoms andlife circumstances stemming from their illness,” he said, “along with acompulsion to prove to others that they are not ill, despite negative consequencesassociated with doing so.”
Take Theodore Kaczynski, for example. Kaczynski, otherwise known as the unabomber, rejected claims that he was mentally ill even though it could have cost him his life. At one point during his 1997 trial, Amador explained, Kaczynski, who stood accused ofkilling three people and injuring 23 with his homemade bombs, refused to be examined bystate psychiatric experts. Although a mental illness defense was his only hope of escapinga first-degree murder conviction and a possible death sentence, he blocked his attorneysfrom using the insanity defense.
Amador, who served as an independent expert for the court, reviewed Kaczyinski’s extensive psychiatric records, neuropsychological test results, and the infamous unabomber diaries. Amador then supplied the court with mounting evidence that Kaczynski’s refusal to be evaluated related to anosognosia, a manifestation of Kaczynski’s schizophrenia.
Amador’s quest to understand the basis of this syndrome lies a little closer to home.
It was his experience as a clinician and as a brother of someone with schizophrenia,Amador said, that led him to do research on anosognosia, “which is not to be confusedwith denial,” he emphasized, although in the beginning, he did not make thatdistinction. “That’s what I called it when my brother refused to take his medications, and thatis what I called it when after his third hospitalization, I found his Haldol in thetrashcan,” said Amador.
“This is someone who taught me to throw a baseball and ride a bicycle. I really looked up to him and was appalled by what I thought was his immaturity, stubbornness, and defensiveness.”
But research points to a much more complex problem.
Intrigued by a 1986 study by William H. Wilson, M.D., and colleagues that found that 89percent of patients with schizophrenia denied having an illness, Amador conducted his owninvestigation of the issue. Amador and his colleagues found in a 1994 study that nearly 60 percent of a sample of221 patients with schizophrenia did not believe they were ill.
A Frustrating Existence
Amador also described what it is like to work with someone who has anosognosia. Onepatient encountered by Amador had a lesion on the frontal lobe of his brain. He wasunaware that he was paralyzed on his left side or that he had problems writing. When askedto draw a clock, the patient thought he did fine, Amador recalled.
However, when Amador pointed out to the patient that the numbers were outside of thecircle, the patient became upset. “The more I talked to him [about the drawing], themore flustered he got. . . . Then he got angry and pushed the paper away, saying ‘it’s notmine-it’s not my drawing.’ ” Amador finds the same reaction appears when he talks to people with severe mentalillness, which sometimes involves similar frontal lobe deficits. “Instead of being anally, I end up being an adversary,” he said.
Amador urged family members and mental health professionals at the NAMI meeting tounderstand that collaboration with treatment by someone who has a severe mental illnessand anosognosia is a goal, not a given. “Don’t expect them to comply with any treatment plan, because they don’t believethey are ill,” noted Amador. It is important instead to develop a partnership with the patient around those things that can be agreed upon. Amador said that family members and clinicians should first listen to the patient’s fears, such as being placed in the hospital against his or her will.
Empathy with the patient’s frustrations and even delusional beliefs is also important, remarked Amador, who said that the phrase “I understand how you feel” can make a world of difference. The most difficult thing for family members to do in building a trusting relationship,he said, is to restrict discussion to the problems that the person with mental illnessperceives as problems. “You might see the hallucinations or delusions as the bigproblem,” said Amador. “Your loved one, however, may be complaining about notgetting to sleep at night. That is the problem you should be discussing.”
Perhaps a patient will only take his or her medications to get family members and clinicians to quit bothering them, and this is sometimes enough, Amador said. “You have to find out what motivates them to take their medications, then reflect that reason back and highlight the perceived benefits.”
Amador wrote about getting people with serious mental illness to accept treatment in abook he coauthored with Anna-Lisa Johanson (see story on page 13) titled, I am Not Sick, IDon’t Need Help: A Practical Guide for Families and Therapists, published in 2000 by VidaPress. It can be purchased online at www.vidapress.com/INSIDNH-Main.htm for $15.95. Tenpercent of all proceeds go to NAMI, the National Alliance for Research on Schizophreniaand Depression, the National Depressive and Manic-Depressive Association, and a fund setup by David Kaczynski, brother of Theodore, to help the victims of the unabomber.