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SEPTEMBER 2006 Poor Insight in Schizophrenia: Overview and Impact on Medication Compliance

Xavier Amador, PhD Associate Professor of Psychiatry Teachers College This monograph is designed to be a Columbia University summary of information. While it is New York, New York detailed, it is not an exhaustive clinical review. McMahon Publishing Group, Janssen LLP, and the authors neither Overview is linked to executive (or frontal lobe) dysfunc- affirm nor deny the accuracy of the tion and abnormalities, has a major impact on information contained herein. No liabili- According to the Diagnostic and Statistical the course of the illness, and causes both par- ty will be assumed for the use of this review, and the absence of typographi- Manual of Mental Disorders, Fourth Edition, tial and complete noncompliance. In this arti- cal errors is not guaranteed. Readers Text Revision (DSM-IV-TR), “A majority of indi- cle, I describe the research that supports this are strongly urged to consult any rele- viduals with schizophrenia lack insight regard- statement and suggest ways in which we can vant primary literature. Copyright © ing the fact that they have a psychotic illness. counter one of the major problems caused by 2006, McMahon Publishing Group, Evidence suggests that poor insight is a man- poor insight—partial and complete noncompli- 545 West 45th Street, New York, NY ifestation of the illness itself, rather than a cop- ance with treatment. 10036. Printed in the USA. All rights ing strategy. It may be comparable to the lack reserved, including the right of repro- of awareness of neurological deficits seen in duction, in whole or in part, in any form. stroke, termed anosognosia. This symptom What Is Insight? predisposes the individual to noncompliance with treatment and has been found to be pre- Any review of the literature on insight dictive of … an increased number of involun- requires a brief discussion of the terminology tary hospital admissions, poorer psychosocial so that what is being discussed is clear. functioning, and a poorer course of illness.”1 Descriptors such as “poor insight,” “defensive As co-chair of the last revision of the DSM denial,” and “deficits in illness awareness”2 text, I was asked to propose changes that often reflect important underlying conceptual would better reflect scientific consensus. differences in addition to semantic differ- Every change considered, including the ences. For example, poor insight is under- Distributed by McMahon expansion of the “Associated Features” sec- stood as a psychological defense mechanism tion quoted in the preceding paragraph, had and also is conceptualized as a neurocogni- Publishing Group to be peer-reviewed by other scientists. In tive deficit. At the most fundamental level, many instances, empiric articles and reviews poor insight in psychosis has been described had to be supplied to the reviewers. The as a lack of awareness of having an illness, of expanded discussion of poor insight reflects the deficits caused by the illness, the conse- scientific consensus in the field (as of 1999) quences of the disorder, and the need for that poor insight is common in schizophrenia, treatment. In this article, terms such as “poor insight” and “unawareness of illness” are used in this broadest a Likert scale rather than dichotomously; respondents were sense unless specific aspects of insight, such as awareness of asked to specify their level of agreement with each of a list of symptoms, are being described. statements—because it is believed that some patients can have a little insight. The team measured respondents’ insight into having a mental illness and also their awareness of signs and Prevalence symptoms. The results showed that nearly 60% of the patients with schizophrenia were unaware of being ill. In the past 15 years, there has been an explosion of In clinical terms, when the patients enrolled in the study research into the problem of poor insight. Until recently, the described in the preceding paragraph were asked whether lack of empiric methods and data, coupled with preconcep- they had any mental, psychiatric, or emotional problems, about tions about the causes of poor insight (ie, that it is always one half answered “no.” Usually, the negative response was defensive denial), had hampered progress in this area. Despite emphatic and at times was followed by unusual explanations of these early misunderstandings, the topic has become increas- why they were inpatients on a psychiatric ward. These ranged ingly important among researchers studying psychotic disor- from “because my parents brought me here” to stranger ders. A MEDLINE search from 1998 through December 2005 beliefs, such as “I’m just here for a general physical.” Whereas in which the key words/terms “schizophrenia,” “insight into ill- the majority of patients with depression and anxiety disorders ness,” and “awareness of illness” were used revealed that 200 actively seek treatment because they feel bad and want help, empiric studies of poor insight in schizophrenia have been these individuals, by contrast, were unaware of having a seri- published in the peer-reviewed scientific literature since 1991. ous mental illness. Unlike people with depression and anxiety, Before that time, there were fewer than 10. Among those was a they never complained about having a mental illness because report by Carpenter and colleagues, from the World Health from their perspective, they did not have one. Indeed, their Organization International Pilot Study of Schizophrenia.3 They main complaint was usually feeling victimized by their family, found that “poor insight” was among the 12 “most discriminat- friends, and doctors, who were pressuring them to accept treat- ing” symptoms for differentiating schizophrenia from other ment for an illness they believed they did not have. mental disorders. Wilson and colleagues found poor insight to be the most common symptom of schizophrenia, present in 81% of the sample studied.4 However, both studies used a sim- Nearly 60% of the patients with plistic (ie, dichotomous, single-item) rating of insight, which lacked reliability and likely overestimated the problem. Most schizophrenia and nearly 50% of studies using more psychometrically sound measures of the subjects with manic depression insight find that approximately one half of patients with schizo- (with psychosis) were unaware of phrenia lack insight. In a more recent study, completed as part of the DSM-IV field being ill. trials, more than 400 patients with psychotic disorders from 7 sites across the United States and 1 site in Mexico were exam- ined5 and their insight measured with the Scale to assess In addition, a significant percentage of those studied were Unawareness of Mental Disorder (SUMD),6 which captures dif- unaware of the various signs of the illness that had been diag- ferent aspects of illness awareness. The SUMD rates insight on nosed, despite the fact that everyone around them could read-

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20 Percent of patients Percent

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0 Anhedonia Asociality Delusions Flat Affect Hallucinations Thought Disorder Symptom Figure. Percentage of patients with schizophrenia who were unaware of the signs and symptoms of their illness.5 2 ily recognize the symptoms (eg, thought disorder, mania, hallu- and measures of insight into illness. cinations). The pattern of pervasive unawareness of symptoms, The DSM text cited at the beginning of this article empha- shown in the Figure, was also found in all the other patients sizes that poor insight in schizophrenia is a symptom of the dis- with a psychotic disorder whom we studied (except those with order. Today, there is widespread consensus in the field that psychotic depression). This was the first time anyone had schizophrenia is a biologically based brain disorder and that looked at this issue, so the team was surprised to learn that the the symptoms of the illness (eg, delusions, negative symptoms) problems with illness awareness did not stop at unawareness stem from brain dysfunction. More than 30 years of empiric of a diagnosis. The unawareness we were documenting was research clearly characterize severe unawareness of illness in severe and pervasive (ie, patients were unaware of their diag- schizophrenia as a common feature of the disorder, and it is for nosis and unable to see even the most obvious signs and this reason—as well as the studies finding correlations between symptoms of their illness). unawareness and neuropsychological deficit—that one can In addition to being severe and pervasive, poor insight is state with confidence that severe and persistent unawareness consistently present in patients with schizophrenia, and like of illness in schizophrenia is a symptom of schizophrenia. Fur- some negative symptoms, has a strong correlation with non- thermore, I believe that just as we label fixed, false beliefs that compliance and thus effectiveness of treatment.7 The fact that persist over time despite contradictory evidence as “delu- poor insight appears to be a trait of the disorder in many sions,” the time has come to label unawareness that is severe, patients may help to further subtype patients with schizophre- persists over long periods of time, and is associated with cog- nia along a domain of psychopathology with strong predicative nitive deficits as anosognosia. Patients with such severe validity.7, 8 In particular, my colleagues and I have proposed that deficits in insight should be given a diagnosis of “anosognosia severe and persistent unawareness of one’s disease is a man- for schizophrenia” rather than “poor insight.” ifestation of the frontal lobe pathology that leads to significant problems with treatment adherence. Clinical Significance of Poor Insight

Etiology of Poor Insight Poor insight is among the best predictors of nonadherence to treatment.12 It is common sense really. Who would want to In my experience, many clinicians still believe that poor take medicine for an illness they did not believe they had? Not insight in schizophrenia is almost always a consequence of surprisingly, poor insight also predicts a poorer course of ill- denial—a defensive coping strategy—or due to a lack of edu- ness (eg, increased number of relapses and hospitalizations, cation about the illness (ie, the patient does not yet know the and deteriorating work performance, social skills, quality of terms used to describe the illness and symptoms). In 1991, social relationships, and other measures of illness course and my colleagues and I hypothesized that poor insight shared an recovery). Whether these findings are a consequence of poor etiology with certain types of anosognosia in neurologic dis- adherence (either complete and/or partial nonadherence) or a orders.2 Studies have looked at whether poor insight is best direct consequence of the underlying pathophysiology of explained as due to denial, a lack of education about the ill- anosognosia is unknown. What is well replicated, however, is ness, or neurocognitive deficit (ie, executive dysfunction). that unawareness of illness is associated with a range of prob- Studies conducted over the past decade clearly point to exec- lems, not the least of which is nonadherence to medication. utive dysfunction rather than other causes as explaining severe and persistent lack of insight in schizophrenia. That does not mean that denial and psychoeducation are never Treatment Options To Improve Compliance relevant or clinically meaningful. However, these factors play a very small role in predicting poor insight in comparison with Very often clinicians are asked, “What medication is best?” executive dysfunction.9 The answer, if one relies on the research, is “none.” My experi- In the first study to test our hypothesis, Young et al10 found ence and the science agree that we cannot reliably predict a significant correlation between unawareness of illness as which medication will be best for any particular individual. measured by the SUMD and 2 variables on the Wisconsin When deciding on a specific medication, one needs to weigh— Card Sorting Task (WCST), a neuropsychological test sensitive among other things—how well it is working against the side to frontal lobe dysfunction. The percentage of perseverative effects for that individual. In some instances, cost is also a responses and number of categories completed on the WCST deciding factor. were found to significantly correlate with the total symptom awareness and total symptom attribution scores as measured by the SUMD. The researchers also classified the sample into Just as we label fixed, false beliefs that high- and low-awareness groups and performed a discrimi- nant function analysis to determine which of a set of variables persist over time despite contradictory most significantly distinguished between the high- and low- evidence as “delusions,” the time has awareness groups. They found that a combination of persever- ative errors and average symptom severity correctly come to label unawareness that is categorized 83.9% of the high- and low-awareness groups. severe, persists over long periods of This study offered the first empiric support of our hypothe- time, and is associated with cognitive sized relationship between poor insight and frontal lobe dys- function. Studies that directly measured the relationship deficits as anosognosia. between poor insight and neuropsychological function have been comprehensively reviewed by Morgan and colleagues,11 who determined that the overwhelming majority of studies test- That said, however, I do believe that certain generalizations ing this hypothesis have found significant relationships can be made when it comes to choosing medications for peo- between measures of frontal function (in particular the WCST) ple with a history of poor insight and compliance issues with 3 4 negative symptoms, appearsto beresistant to drugtreatment. ined thisquestionspecifically. Generally, anosognosia,like other hallucinations, canmedicationshelp? (poor insight)isasymptom ofmentalillness,like or flat affect to speakto aquestionIamfrequently asked: replicated numerous times. from personalexperience. lowed. There isresearch whatIhave learned thatsupports open hisorhermouthto prove thatthepillshave beenswal- administering thedosedoesnot have to askthepatientto also doesaway withother issues.For example, theperson for thepatientandeasierfor meto monitor compliancebut a long-actinginjectabledrug,whichnot onlymakes iteasier recommend complianceornoncompliance. Ioften ing partial dose thatwas prescribed inthefirstplace. dose even higherwhen,infact, thepatientisnot takingtheentire not enough—benefit,thedoctor may beafraid to raise ahigh doses. However, even ifthemedicineappearsto have some—but because nooneknew thepersonwas missingmany, butnot all, individual asineffectivemedications written for off aparticular given afair trialwhenthatisfar from thetruth.Ihave seenmany it doesnot appearto beworking, they willassumeithasbeen tor andfamily believe apatientistakingmedicationregularly and stop takingtheirmedicationcompletely. For onething,ifthedoc- tle, butnolesssignificant,thanwhathappenswhenthepatients treatment team compliancecanbemore from sub- suchpartial simply to forget. have to consciouslyorunconsciouslydecideto skipadoseor fewer thedoses,few and not succumbto anunconsciousdesire to skipadose.The also easierfor thepersontakingmedicineto remember when itmustbetaken several timesaday ormore. Anditis medicine istaken biweeklyoronlyoncetwiceaday than the medicine. simple andmake iteasierfor thepersonto continuetaking regard keep to takingtheirmedication.Inshort, thedosing As afinalcommentonthesubjectofmedication,Iwould like Long-acting injectablesare aneffective method for reduc- The problems thatarisefor patients,theircaregivers, andthe It isfar easierto monitor apatient’s compliance whenthe skip a dose or simply toskip adoseorsimply forget. consciously orunconsciouslydecideto willhaveto person the opportunities fewerThe fewer doses,the the the er the opportunities thepersonwill er theopportunities 13 This essentialfindinghasbeen Few studieshave exam- If anosognosia .WilsonWH,Ban TA, GuyW. Flexible system criteria inchronic schizophrenia. 4. Jr, Carpenter WT Strauss JS,Bartko JJ.Flexible system for thediagnosisof 3. AmadorXF, Strauss DH,Yale GormanJM.Awareness SA, ofillnessinschizo- 2. 1. References In Summary to beeffective. injectable medicationsinpreference to oral therapies are likely and,ifpossible,long-acting of dosing,increased supervision, have argued thatwhensuchpatientsare treated, simplification course ofillnessandproblems withtreatment adherence. I insight.” Anosognosiafor schizophrenia results inapoorer schizophrenia” beusedinstead ofthebroader term “poor such cases,Ihave proposed thattheterm “anosognosiafor problem becauseitstems from neuropsychological deficits.In problems withinsight.Psychoeducation doesnot remedy the one halfofallpatientsexhibit severe, andpersistent pervasive, 3 Kane JM.Strategies for improving complianceintreatment ofschizophrenia by 13. AmadorXF, Kronengold H.Understanding andassessinginsight.In:Amador 12. Morgan Neuropsycological K,David A. studiesofinsightinpatientswithpsy- 11. Young DA, Davila R,ScherH.Unawareness ofillnessandneuropsychological 10. KasapisC,AmadorXF, Yale et al.Neuropsychological SA, anddefensive 9. Ratakonda S,GormanJM,Yale AmadorXF. SA, Characterization ofpsychotic 8. AmadorXF, GormanJM.Psychopathologic domains andinsightinschizophre- 7. AmadorXF, Strauss DH,Yale S,et al.Assessmentofinsightinpsychosis. 6. AmadorXF, FlaumM,Andreasen NC,et al.Awareness ofillnessinschizophre- 5. Poor insightiscommoninschizophrenia. Approximately Psychiatry. C Science schizophrenia: from report theWHOInternational ofSchizophrenia. Pilot Study phrenia. Revision. Washington, DC:AmericanPsychiatric Association;2000. ManualofMentalDisordersDiagnostic andStatistical chiatry. using along-actingformulation ofanantipsychotic: clinicalstudies. 2004:3-30. nia andRelated Disorders. XF, David AS,eds. Oxford University Press; 2004:177-193. ness ofIllnessinSchizophrenia andRelated Disorders. chotic disorders. In:AmadorXF, David AS,eds. inchronicperformance schizophrenia. Schizophr Res. 1998;18:117-118. aspects ofpoorinsightanddepression inschizophrenia. try. conditions: useofthedomainspsychopathology model. nia. 836. nia, schizoaffective andmooddisorders. ompr Psychiatry 1998;55:75-81. Psychiatr Clin North Am. Psychiatr ClinNorth 2003;64(suppl 16):34-40. . 1973;182:1271-1277. Schizophr Bull. 1993;150:873-879. . 1986;27:259-265. Insight andPsychosis: Awareness ofIllnessinSchizophre- 1991;17:113-132. 2nd ed.NewYork, NY: Oxford University Press; 1998; 21:27-42. Arch GenPsychiatry. 1994;51:826- Insight andPsychosis: Aware- 1993;10:117-124. 2nd ed.NewYork, NY: , Fourth Edition,Text, Fourth Arch GenPsychia- Schizophr Res. J ClinPsy- Am J

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