Journal of Psychosocial Nursing and Mental Health Services

CNE Article 

A Nursing Tool for Adherence and Recovery in Psychosis: A Pilot Study

Sharon A. Sousa, EdD, RN, CS; Robert Frazier, PhD

Abstract

Clients with psychotic disorders are at great risk for relapse and rehospitalization. This risk is magnified by poor adherence to medications, as well as refusal to accept optimal treatment planning, including more beneficial atypical medications. Adherence can be even more compromised because of clients’ poor insight into these illnesses and their inability to recognize the potential for recovery that exists when taking medications as prescribed. This poor insight makes effective collaboration in treatment more difficult and is an exceptionally troubling impediment to successful treatment.

Currently, there are few effective strategies to improve insight into psychosis. We have developed the Levels of Recovery from Psychotic Disorders Scale (LORS) as a teaching tool. It is designed to identify strengths and weaknesses in insight in order to provide the basis for an intervention to enhance and promote change. This article reviews the relevant literature on adherence and insight in this population of clients with psychotic disorders. It also reviews a pilot study comparing the LORS to the BASIS-32. The findings provide the basis for future studies using the LORS to enhance insight, adherence, and recovery.

Abstract

Clients with psychotic disorders are at great risk for relapse and rehospitalization. This risk is magnified by poor adherence to medications, as well as refusal to accept optimal treatment planning, including more beneficial atypical medications. Adherence can be even more compromised because of clients’ poor insight into these illnesses and their inability to recognize the potential for recovery that exists when taking medications as prescribed. This poor insight makes effective collaboration in treatment more difficult and is an exceptionally troubling impediment to successful treatment.

Currently, there are few effective strategies to improve insight into psychosis. We have developed the Levels of Recovery from Psychotic Disorders Scale (LORS) as a teaching tool. It is designed to identify strengths and weaknesses in insight in order to provide the basis for an intervention to enhance and promote change. This article reviews the relevant literature on adherence and insight in this population of clients with psychotic disorders. It also reviews a pilot study comparing the LORS to the BASIS-32. The findings provide the basis for future studies using the LORS to enhance insight, adherence, and recovery.

Psychotic mental disorders continue to present major worldwide public health problems, and yet there are very few empirically demonstrated, effective strategies to help clients better appreciate the severity of their illnesses. Compared to clinicians’ assessments, clients often underestimate the extent of their disabilities (Amador & Kronengold, 1998). This discrepancy in perception may be associated with clients’ refusal to participate in the most effective interventions, nonadherence to prescribed medications, nonparticipation in psychosocial interventions, poor recovery from psychosis, and innumerable personal and societal losses. Therefore, there is a significant clinical need to pursue therapeutic interventions that may help improve such clients’ participation in treatment.

Although few clinical symptoms have such a profound effect on the treatment of schizophrenia as poor insight, clinical correlates of lack of insight are not well understood (Amador & Kronengold, 1998; Buckley, Hasan, Friedman, & Cerny, 2001). Lack of insight is also referred to as anosognosia, or imperception of disease and denial of illness (Amador & Kronengold, 1998; Buckley et al., 2001). Poor insight is associated with inferior ratings on work quality, work habits, cooperativeness, and poor grooming and hygiene, as well as problems with medication adherence and increased total years of treatment (David, 1990; Perkins & Moodley, 1994; Lysaker, Bryson, & Bell, 2002). The lack of awareness of their disorder seen in clients with psychosis may primarily be due to poor verbal memory and cognitive disorganization (Sackeim, 1997).

Literature Review

A literature review was conducted for this project using MedLine, CINHAL, and PsychLit from 1990 to present. Key words searched were “schizophrenia,” “psychosis,” “psychosocial interventions,” “insight,” “adherence,” and “compliance.” The available literature provided conflicting definitions of poor insight and its relationship to symptoms and neurocognitive dysfunction. Consequently, no single definition of insight exists (Sartory et al., 2001). However, there is often agreement that insight is a multidimensional process that may include factors such as the awareness of suffering from a mental illness; the ability to appreciate that symptoms such as delusions are abnormal; and the acceptance of the need for treatment (Doyle et al., 1999; Limpert, 1999). It is possible that recognizing that one has a mental illness is culture bound (Collins, Remington, Coulter, & Birkett, 1997; David, Buchanan, Reed, & Almeida, 1992).

Various methods have been used to measure insight. The Scale to assess Unawareness of Mental Disorder (SUMD) (Amador & Strauss, 1990) has proven both reliable and valid (Amador, Strauss, Yale, Endicott, & Gorman, 1993). It also distinguishes current and retrospective awareness of having a mental disorder; the effects of treatment, including medication; the consequences of the mental disorder; and the specific signs and symptoms of the disorder. This approach is helpful for possible psychoeducational strategies in that it identifies specific symptoms associated with poor insight (McEvoy, Freter, Merrit, & Apperson, 1993).

Clearly, insight into one’s illness is closely correlated with adherence to recommended treatment. Medical adherence has been defined as the extent to which clients’ behavior coincides with medical or health advice (Pinikahana, Happell, Taylor, & Keks, 2002). Medication nonadherence is no worse in schizophrenia than in physical disorders, but more than 50% of clients with schizophrenia are nonadherent at any one time, and the consequences can be extremely troublesome. The degree to which clients with schizophrenia acknowledge that they have a serious and persistent mental illness and need treatment has consistently been found to predict how readily they will seek, or at least cooperate with, treatment (McEvoy, 1998).

The literature related to nonadherence includes client-related factors, illness-related factors, antipsychotic medication-related factors, psychosocial factors, clinician factors, and strategies for maximizing adherence. Contributing issues that appear to affect poor adherence with treatment include alcohol and substance abuse; short duration of illness; medication side effects; psychosocial factors, such as health beliefs; and a poor therapeutic alliance (Pinikahana et al., 2002).

History of the Lors

The development of the Levels of Recovery from Psychotic Disorders Scale (LORS) as a client, family, and clinician education tool evolved from the Massachusetts Alliance for the Mentally Ill Medication Task Force (Sousa, 1998). It was created to portray a “broad stroke” picture of an individual’s level of current functioning and psychotic illness. The LORS is a one-page tool with five columns and six rows (Figure). It is different from other instruments associated with improving insight because it is both an assessment of insight and a tool that can be used in an intervention with clients. It can be used with both clients and their families. In addition, it has been used to better educate staff on the principles of illness, treatment, and recovery.

Levels of Recovery From Psychotic Disorders (LORS) chart. Copyright © 2002. Reprinted with permission from Sharon Sousa, EdD, RN, CS.

Figure.

Levels of Recovery From Psychotic Disorders (LORS) chart. Copyright © 2002. Reprinted with permission from Sharon Sousa, EdD, RN, CS.

In total, it contains 13 items, rated on a scale ranging from 1 to 5. Items can also be rated “not applicable.” The rows reflect:

  • The amount of supervision the individual currently receives.
  • The positive symptoms of the illness, including knowledge regarding illness and adherence with treatment.
  • The negative symptoms of the illness.
  • The individual’s capacity for work and education.
  • The individual’s social skills.
  • The individual’s abilities for self-advocacy.

The use of substances is included in the section documenting knowledge regarding illness and adherence with treatment. The five columns provide a range for evaluating each set of behaviors, from active illness (danger to self and others) to normalized activity.

Examples of Using the Lors

When used clinically, the LORS visually moves clients from the left to the right, from very ill to generally “normalized activity.” Standardized instructions, written at an eighth-grade level, have been developed to help clients complete the LORS (Sousa, 2003). These instructions are read to clients to help them complete the instrument.

The middle column, stable but not improving, was intended to provoke consideration for individuals who were either inadequately treated or were not adhering to recommended treatment plans. The Massachusetts Medication Task Force identified these individuals as at possibly greater risk for relapse and other psychiatric problems. Clients most likely to experience symptoms in this column are generally considered still quite symptomatic and unable to participate in various aspects of psychiatric rehabilitation. Because these clients were not acutely symptomatic, they generally tended to remain on the same medication, despite experiencing many positive and negative symptoms. In addition, these clients often did not have a great deal of insight regarding their symptoms and generally did not request a trial of a new medication. It was also possible that clients categorized in this column were not adhering to medication treatment plans.

The LORS has been used in inpatient, day treatment, and out-patient settings. It provides a useful tool for health care providers, clients, and families to discuss important aspects of the clients’ care. Families have used the LORS in dialogues with prescribing clinicians regarding their family members’ medications. The LORS has also been used as a training tool with staff. However, the most clinically compelling use of the LORS has been with clients.

Staff introduced the instrument to clients for several purposes. Initially, treatment-resistant clients were identified, and staff offered their perceptions regarding these clients’ current levels of functioning. Often the staff perceptions depicted serious symptoms that interfered with the clients’ optimal levels of functioning. The clients were asked to complete their own LORS and then engage in a dialogue with clinical staff about the differences in scores. It was apparent that this process addressed a major problem with serious mental illnesses—that of client denial and minimization of symptoms. In completing the LORS on their own, clients often portrayed themselves as quite healthy and well into recovery, despite evidence to the contrary.

During this therapeutic dialogue (i.e., the LORS-Enabled Dialogue or LED), staff explored the clients’ overall recovery goals, including wanting to live independently, being able to volunteer or work part time, and being hassled less by health care providers. During this therapeutic discussion of differences in perception, it was evident that the content and process of the dialogues often influenced clients’ appreciation of their illnesses and decisions regarding adherence to treatment, as well as consideration of alternative treatment to help them meet their goals. The LORS appeared to be affecting insight into mental illness as it educated clients about their illnesses and helped them make behavioral changes. The Massachusetts Department of Mental Health, in its guidelines for the management of people with schizophrenia, cited the LORS as an example of a psychoeducational strategy with this population (Barreira et al., 1999).

Lors Pilot Project

Sample and Design

A pilot study to examine the feasibility of administering the LORS was conducted in 2000 at a community mental health center in Massachusetts. Case management clients in the community rehabilitation services program (CRS) with a diagnosis of psychotic illness were eligible for participation in the study. The CRS program performs home visits with individuals with severe mental illnesses, offering medication monitoring and teaching, as well as instruction in activities of daily living, personal hygiene, and socialization. A total of 45 clients diagnosed with psychotic illnesses were enrolled in the study. An internal review board from the Massachusetts Department of Mental Health evaluated and approved the study. The LORS and the Behavior and Symptom Identification Scale (BASIS-32) (Eisen & Youngman, 1994), a self-report measure of symptoms, were administered by clinicians to all participants at baseline, 6 months, and 12 months. While most clients completed all three testing intervals, several clients participated in the baseline testing and then again at 12 months. Standard demographic data were also collected. Pearson product moment correlations were calculated between the LORS factors and the 32 items of the BASIS-32.

Procedure

As mentioned above, the LORS is a 13-item instrument that assesses a number of variables associated with psychotic illnesses (i.e., amount of supervision, potential for violence, voices, thinking, reality testing, knowledge regarding illness and adherence to treatment, facial expression, speech, interest in others, ability to volunteer or work, personal hygiene care, social interaction skills; and the degree to which the individual initiates self-advocacy). To calculate the LORS, a numerical score was assigned to each of the columns, with 1 representing the least difficulty or symptoms and 5 representing the most difficulty or symptoms. The scoring directions were selected to correspond with other instruments used with similar populations, such as the BASIS-32. The LORS thus yields 13 separate scores from 1 to 5, with specific rating criteria.

The Clinical Director of the CRS program was instructed in the use of the LORS and was supervised when administering the LORS with clients. After instruction, the Clinical Director trained other members of the CRS program in administering the LORS. Staffing within this program includes case managers, nurses, and psychotherapists. The Clinical Director then observed staff interviewing clients and completing the LORS. The BASIS-32 is a self-administered instrument and is regularly administered to all clients in this system. It yields 32 items, scored from 1 to 5, which are grouped into five factors, plus an overall average score. The five BASIS-32 factors are: relations with self and others, depression-anxiety, daily living skills, impulse-addiction, and psychosis.

Analysis

There were two steps in the analysis. First, the LORS items were submitted for a factor analysis to determine whether there were groupings among the items. The 13 scores were analyzed using SYS-TAT software, with a Varimax, Quartimax, and Equamax rotation. Second, the LORS scores were grouped according to the two factors and correlated with the BASIS-32 scores, as well as with each other.

Results

A total of 87 LORS and BASIS-32 tests were administered and scored. Forty-five adult clients from a population of male, female, and minority clients in the CRS program participated. Fifty-two percent of the participants were men, the participants’ mean age was 38.6, and on average, the participants had been ill for 15 years. Sixty-eight percent of participants were diagnosed with schizophrenia, 22% were diagnosed with schizoaffective disorder, 8% were diagnosed with bipolar disorder, and 2% were diagnosed with psychosis not otherwise specified.

The results of preliminary factor analysis work suggested the possibility of two subfactors (i.e., items with a factor loading of at least .58) and minimal overlap on the two subfactors. Factor one, tentatively named “institutional support,” and factor two, tentatively named “self-advocacy,” were significantly correlated (.661) with each other. No significant correlation was found with any of the BASIS-32 scores.

Preliminary data indicates two distinct factors with the LORS when it is compared with the the symptoms rated by the BASIS-32. Future research will be directed to identifying whether change in these aspects of client functioning can contribute to improvement in adherence and potentially lead to recovery.

Discussion

It is clear that the LORS assesses characteristics of illnesses that go beyond symptoms. We were surprised by the absence of correlations with the BASIS-32 scores. An examination of the BASIS-32 scores provided an interesting observation (i.e., that the average score on any of the five items was close to 1) (range .54 to 1.17). This finding is similar to the averages reported in the literature. This is interesting because the BASIS-32 is a self-report measure, and a score of 1 is equivalent to a rating of “a little difficulty.” This finding is surprising because the majority of the individuals taking the test were either recently hospitalized or quite symptomatic, and one would expect them to be having more than just “a little difficulty” in their lives. This may indicate that clients have a tendency to minimize their problems on self-report measures, such as the BASIS-32, and that administration of the LORS by clinicians may result in a more accurate assessment because the LORS may provide information on other aspects of clients’ functioning. It also may indicate that the clients who underreport their symptoms may also have poor treatment adherence because they minimize the seriousness of their illnesses.

These observations lead to a testable hypothesis, namely that those clients who report low scores on the BASIS-32 have poor adherence to treatment. A second hypothesis is that low BASIS-32 scores may be raised if the LORS is used to inform and educate clients about how the treatment team views them and their illnesses. The psychoeducational support offered by the LED could lead to an increase in BASIS-32 scores because the clients’ self-reports would become more accurate, or at least the clients’ understanding of their illnesses would be more aligned with the treatment team’s understanding of the illness.

Limitations

There were no formal training procedures associated with administration of the LORS in this study. A preliminary training manual for the LORS (Sousa, 2003) is available and will be tested in the future for reliability and validity. Certainly a significant limitation is that clinicians administered the LORS, while the BASIS-32 was self-administered. In addition, results may be negatively affected by the less than total participation of clients in all three testing intervals.

Future Studies

These interesting preliminary studies, positive reports from clinicians using the LORS, and the support of the National Alliance for the Mentally Ill and the Massachusetts Department of Mental Health encourage further research using the LORS and the LED intervention. Additional factor analytic work with a large sample is needed to better understand these preliminary findings. In addition, further testing of the LORS is currently underway to better assess its specific measurement of insight. This study will compare the LORS with the SUMD as a measure of insight. A National Institute of Mental Health grant is being submitted to test the efficacy of the LORS or LED intervention in improving clients’ insight, adherence to medications, and recovery from severe symptoms. The LED intervention will use principles of motivational interviewing (Miller, 1983) to begin the process of educating clients about their illnesses. Kemp, Hayward, Applewhaite, Everitt, and David (1996) demonstrated the use of motivational interviewing as an effective strategy in increasing adherence in psychosis. Hopefully, this proposed grant will help us build on this research and study the effects of the LED intervention as a method to maximize adherence to interventions through enhanced insight into mental illness.

References

  • Amador, X. & Kronengold, H. (1998). The description and meaning of insight in psychosis. In Amador, X. & David, A. (Eds.), Insight and psychosis (pp. 317–331). New York: Oxford University Press.
  • Amador, X.F. & Strauss, D.H. (1990). The Scale to assess the Unawareness of Mental Disorder (SUMD). New York: Columbia University and New York State Psychiatric Institute.
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  • Kemp, R., Hayward, P., Applewhaite, G., Everitt, B. & David, A. (1996). Compliance therapy with psychotic patients: A randomized controlled trial. British Medical Journal, 312, 345–349. doi:10.1136/bmj.312.7027.345 [CrossRef]
  • Limpert, C.A. (1999). Diminished emotional experience and its relationship to poor insights in schizophrenia. Dissertation Abstracts International: Section B: The Sciences and Engineering, 60 (2–b).
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  • McEvoy, J.P. (1998). The relationship between insight in psychosis and adherence with medications. In Amador, X. & David, A. (Eds.), Insight and psychosis (pp. 289–306). New York: Oxford University Press.
  • McEvoy, J.P., Freter, S., Merrit, M. & Apperson, L.J. (1993). Insight about psychosis among outpatients with schizophrenia. Hospital and Community Psychiatry, 44L, 883m–884m.
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  • Sousa, S. (2003). Instruction manual for the LORS .Unpublished manuscript.

Key Points

  1. Poor insight into mental illness is associated with poor adherence to treatment for individuals with psychotic illnesses.

  2. The Levels of Recovery from Psychotic Disorders Scale (LORS) was designed as an educational tool to identify strengths and weaknesses in insight in order to promote beneficial change.

  3. A pilot study using the LORS identified two distinct factors, preliminarily identified as institutional support and self-advocacy.

  4. Future research will be directed at identifying whether or not changes in client functioning are associated with using the LORS as a therapeutic intervention.

Do you agree with this article? Disagree? Have a comment or questions?

Send an e-mail to Karen Stanwood, Managing Editor, at kstanwood@slackinc.com.

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Authors

Dr. Sousa is a Licensed Psychologist Provider/Clinical Nurse Specialist and Assistant Professor of Community Nursing, University of Massachusetts Dartmouth, North Dartmouth, and Dr. Frazier is a Licensed Psychologist and Director of Clinical and Professional Services, Dr. John C. Corrigan Community Mental Health Center, Fall River, Massachusetts.

Address correspondence to Sharon A. Sousa, EdD, RN, CS, Assistant Professor of Community Nursing, University of Massachusetts Dartmouth, 285 Old Westport Road, North Dartmouth, MA 02747; e-mail: ssousa@umassd.edu.

10.3928/02793695-20040315-06

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