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(Chest. 2001;120:1246-1252.)
© 2001 American College of Chest Physicians

The Psychological Impact of End-Stage Lung Disease*

Hedy K. Singer, PhD; Robert A. Ruchinskas, PsyD; Kevin C. Riley, PhD; Donna K. Broshek, PhD and Jeffrey T. Barth, PhD

* From the Departments of Physical Medicine and Rehabilitation (Drs. Singer and Ruchinskas) and Psychiatry (Dr. Riley), Temple University School of Medicine, Philadelphia, PA; and Department of Psychiatry (Dr. Broshek and Barth), University of Virginia School of Medicine, Charlottesville, VA.

Correspondence to: Robert Ruchinskas, PsyD, Department of Physical Medicine and Rehabilitation, Temple University Hospital, Philadelphia, PA 19140; e-mail: rruchins{at}nimbus.ocis.temple.edu


   Abstract
TOP
 Abstract
Introduction
 Materials and Methods
 Results
 Discussion
 Conclusion
 References
 
Study objectives: End-stage lung disease is associated with poor quality of life and increased risk for psychological distress. Despite the significant number of individuals with end-stage lung diseases, the emotional health of these patients, as compared with those with other chronic organ diseases, is not well-known. The purpose of this article is to elucidate personality styles and the presence of psychopathology in a clinical sample of patients with end-stage lung disease presenting for possible lung transplantation.

Design: Cross-sectional survey.

Setting: Two academic medical center transplant programs.

Participants: Two hundred forty-three consecutively referred transplant candidates.

Results: Cluster analysis of the Minnesota Multiphasic Personality Inventory (MMPI)-2 indicated five different personality styles. The majority of patients evidenced mild somatic and depressive symptoms. Approximately one fourth of the sample exhibited marked anxiety and mood disturbances. A small cluster also evidenced features consistent with an antisocial personality style.

Conclusions: Separate and distinct personality styles that could affect quality of life, the need for adjunct treatments, and medical compliance emerged from this sample of individuals with end-stage lung disease. Results are discussed in light of prior research on other end-stage organ conditions and in relation to personality and coping theories.

Key Words: COPD • Minnesota Multiphasic Personality Inventory-2 • psychopathology


   Introduction
TOP
 Abstract
 Introduction
Materials and Methods
 Results
 Discussion
 Conclusion
 References
 
Chronic lung disease is a widespread medical problem associated with increased utilization of health-care resources. It is currently estimated that > 30 million individuals in the United States are living with chronic lung disease.1 Beyond the obvious physical and economic costs, significant decreases in emotional health and quality of life often accompany these conditions. For example, lung disease has a greater negative impact on life satisfaction and increases the likelihood of disability more than most systemic and neurologic conditions.2 The presence of a chronic pulmonary disorder is also associated with increased risk for depression and other mental health disorders. For instance, one study 3 suggested greater psychiatric distress in individuals with COPD than in those patients with multiple sclerosis, spinal cord injury, or rheumatoid arthritis.

Given this association, it is surprising that more research has not focused on the prevalence of mood and other psychiatric disorders in individuals with chronic lung disease, particularly in the most life-threatening forms of the illness. Craven4 reported that nearly half of 116 lung transplant candidates or recipients had a diagnosable psychiatric disorder. Twenty-seven percent had either depressive or panic/anxiety disorders. Similar rates of these disorders have been reported in other organ transplant candidates (eg, liver and heart).5 6 Unfortunately, the diagnosis of a mental disorder has often been made solely through a clinical interview, which may be subject to bias and variability across clinicians. Specifically, {kappa} coefficients of diagnostic agreement for anxiety and depressive disorders have been modest at best.7 Actuarial methods, such as standardized psychometric measures of personality and psychiatric symptomatology, appear to be a more reliable and valid means of appraising the incidence and extent of psychopathology.8 The most commonly utilized of these tools is the Minnesota Multiphasic Personality Inventory (MMPI)-2.9

While not voluminous, prior studies of psychopathology, as measured by the MMPI-2, in end-stage lung conditions have occurred. Most reports10 11 have described mild elevations on scale 1 (hypochondriasis), scale 2 (depression), and scale 3 (hysteria), suggesting increased levels of somatic concern and minor depression in clinical samples. Although informative, these studies are limited by both small sample size and from reporting mean MMPI-2 scores. Specifically, calculating average group MMPI-2 scores does not solve the problem of differentiating individuals with psychopathology from those accurately describing physical symptoms (and thus elevating scale 1 and scale 3). In addition, use of group averages obscures the multitude of individual differences in response to a chronic illness. Cluster analysis, which identifies subgroups or clusters of individuals with similar psychological test profiles, is a more effective method of data examination. This technique identifies potentially important subgroups differing in psychological adaptation.

Cluster analysis has been utilized to identify psychological profiles in other transplant populations. The technique was used to categorize heart transplant recipients into groups exhibiting normal coping, mild somatic concern, marked somatic symptoms coupled with moderated depression, and severe general psychological distress.12 13 While most individuals displayed minimal psychological symptoms, approximately 40% of each of the samples from the above studies was classified as having marked or severe pathology. Clark and Klonoff14 documented five similar clusters of personality profiles in coronary artery bypass surgical candidates. Follow-up evaluation of the clusters demonstrated that configuration, but not elevation of the profiles remained consistent across time (assessed at 3 months, 1 year, and 2 years after surgery), indicating the personality styles did not change as level of distress varied over time.

The cluster analysis technique, however, has not been adequately utilized with end-stage lung disease patients. The sole preliminary report15 clustered subjects into groups similar to those reviewed above, but lacked an adequate sample size on which to base conclusions. Consequently, the present study was undertaken with the intent of examining a large group of individuals with end-stage lung disease to identify relevant psychological profiles.


   Materials and Methods
TOP
 Abstract
 Introduction
 Materials and Methods
Results
 Discussion
 Conclusion
 References
 
Subjects
Subjects consisted of 243 consecutively referred patients (of 259 potential patients) with a diagnosis of end-stage pulmonary disease who received a psychological assessment (including the MMPI-2) at one of two urban organ transplant centers as part of a pretransplant evaluation between 1993 and 1999. Demographic information is listed in Table 1 . The specific medical diagnoses for the sample are presented in Table 2 . One hundred sixty-nine patients were evaluated at Temple University Hospital, a major urban transplant center, and 90 patients were evaluated at the University of Virginia Hospital, which serves primarily a rural population. There were no significant differences between the two groups on any basic demographic variables. During the study period, 16 patients either could not or would not complete the psychological assessment and were excluded from the evaluation sample. An additional three MMPI-2 profiles were considered invalid secondary to random responding and were not included, resulting in a final sample of 243 subjects. Two subjects with limited education who were not able to read the MMPI-2 were judged (through assessment of sentence comprehension) as able to understand test questions and were administered a taped version of the questionnaire.


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  		Table 1.. Demographic Variables of the 243 Participants*

 

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  		Table 2.. Diagnoses Made in Participants

 
Procedures
Patients underwent psychological assessment as part of a multidisciplinary team evaluation of organ transplant candidates. Candidates were seen primarily on an outpatient basis for the 2-h to 3-h evaluation. The assessment included an extensive clinical interview by a psychology intern, postdoctoral fellow, and attending psychologist, and a psychological test battery that included the MMPI-2.

The MMPI, now in a revised edition, the MMPI-2, is a commonly used psychological test that contains 567 true or false items. Test items focus on a wide range of cognitive, emotional and physical states, psychiatric symptoms, interpersonal relationships, and interests. The items are summarized into 13 scales that have clinical and diagnostic significance (Table 3 ). These scales were developed by contrasting the responses of a large group of "normals" against defined clinical groups (eg, depressives). Ten "clinical" scales were developed in this fashion. In addition three "validity" scales were created to assess the degree to an individual may be denying, exaggerating, or otherwise inaccurately reporting symptomatology (Table 3) . A profile generated by the configuration of the 13 scales provides descriptive, diagnostic, and predictive information about the individual.


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  		Table 3.. Personality Domains Measured by MMPI-2 Validity and Clinical Scales

 
The MMPI-2 is the most widely researched psychological measurement of personality.16 Clinical correlates of individual scales and configural profiles of MMPI-2 scales have been extensively studied. Numerous personality correlates of scale configurations have been identified, leading to "trait" descriptors of individuals. In addition, some of the scales (such as scale 2, depression) are able to characterize transitory emotional or psychological "states." Consequently an individual’s profile can describe both enduring personality characteristics and acute emotional and psychological reactions to events. The scales are standardized along a normal distribution (T scores), with scores 1.5 SD above or below the mean (ie, below the seventh percentile or above the 93rd percentile) considered clinically significant.9 As per standard practice, all profiles were adjusted for defensive responding (K scale corrected).

Statistical Analysis
Cluster analysis is a set of statistical techniques employed to create groups of highly similar individuals for classification purposes. One specific type of clustering procedures (hierarchical agglomerative) begins by seeking the two most similar sets of data (eg, test profiles) and joining them. Subsequent profiles are then compared to this set and are subsequently merged with the set (if their degree of similarity is high) or rejected and used to formulate the basis for a subsequent cluster. When complete, this technique creates clusters of profiles that are highly similar within a cluster and maximally different from other clusters. Different clustering algorithms have been applied to form "linkages" among data points. The most commonly applied algorithm, Ward’s method, minimizes variance (dispersion of data points) within clusters. It also has the advantage of generating solutions that relate to profile elevation.17


   Results
TOP
 Abstract
 Introduction
 Materials and Methods
 Results
Discussion
 Conclusion
 References
 
The mean MMPI-2 T scores for the entire sample are presented in Table 4 . Consistent with prior research, mild mean elevations for the group as a whole were present on MMPI-2 scale 1 (hypochondriasis) and scale 3 (hysteria). Scale 1, scale 2 (depression), and scale 3 had the highest number of individuals scoring above the cutoff of 65T.


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  		Table 4.. MMPI-2 Scores of the Participants

 
Profile clusters were examined for each contributing transplant center and as an aggregate with similar results: a five-group solution best characterized the sample. Results of the aggregate cluster analysis are represented in Figure 1 . Cluster 1 was comprised of 85 individuals (35% of the sample) with mild elevations on the two scales of somatic concern (scale 1 and scale 3) and a test-taking style of significantly minimizing psychological distress. Cluster 2 consisted of 42 patients (17%) openly admitting emotional turmoil in the context of mild somatic and depressive symptoms (scale 1 and scale 2). Thirty-eight individuals (16%) comprised cluster 3 who did not display any significantly elevated MMPI-2 scales. Cluster 4 contained 68 patients (28%) who demonstrated marked distress, reflected by significant elevations on scales of somatic concern (scale 1 and scale 3), depression (scale 2), and anxiety (scale 7). The final cluster included 10 candidates (4%) with noticeable elevations on scale 4 (psychopathic deviance) and scale 9 (hypomania) that, when seen in combination, may indicate antisocial attitudes.18



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  		Figure 1.. Mean MMPI-2 T-scale scores per cluster. L = lie; F = infrequency; K = defensiveness; 1 = hypochondriasis; 2 = depression; 3 = hysteria; 4 = psychopathic deviance; 5 = masculinity/femininity; 6 = paranoia; 7 = psychasthenia/anxiety; 8 = schizophrenia; 9 = hypomania; 0 = social introversion.

 

   Discussion
TOP
 Abstract
 Introduction
 Materials and Methods
 Results
 Discussion
Conclusion
 References
 
Five distinct personality profiles, each with the potential to impact treatment decisions and quality of life, were elucidated via cluster analysis of a standardized personality test given to a large sample of transplant candidates suffering from end-stage lung disease. As with prior research, nearly one third of the patients produced profiles indicating clinically significant psychopathology as indicated by prominent elevations of single or multiple MMPI-2 scales. One-half of the patients with COPD showed potential difficulties in emotional adjustment to this life-threatening illness. For example, individuals in cluster 1 displayed mild levels of somatic concern as evidenced by elevations on scale 1 (hypochondriasis) and scale 3 (hysteria). While it has been previously argued19 that accurate reporting of physical symptoms can elevate these scales, the lack of anxiety and defensiveness of this subgroup suggests potential psychological stress expressed through physical concerns (ie, focusing on current symptoms to avoid thinking about the potentially terminal implications the illness). In clinical practice, such individuals will be "stoic," but may tend to talk a great deal about their physical complaints. Cluster 2, on the other hand, will actually admit to emotional difficulties in adjustment to their physical illness and be open to support and reassurance from the treatment team. As with prior studies, a proportion of our sample exhibited no psychological distress on the MMPI-2 (cluster 3).

The remaining two identified clusters are potentially more problematic for treating clinicians. Over one fourth of our sample displayed marked psychological distress characterized by high levels of depression, anxiety, and somatic complaints that would require attention by mental health professionals. In addition to negatively impacting quality of life, the presence of mental health disorders greatly affects medical outcome. For example, the existence of a premorbid psychiatric condition (eg, depression) has been associated with longer postoperative hospitalizations, increased number of rejections, and posttransplant noncompliance.20 21 While as yet not found in the transplantation literature, depression is a well-established risk factor for mortality, particularly in older medical patients.22

Equally as challenging but fortunately not as well represented in the sample is cluster 5, whose members showed signs of possible antisocial personality tendencies. Whereas the first four clusters appeared to represent psychological reaction to medical illness, the last cluster likely signifies a long-standing personality style (that also could be exaggerated by the stress of a life-threatening illness). While presentation on a single measure does not strictly imply a diagnosis, the base rate of this profile in our sample (4%) is equivalent to that reported for antisocial personality disorder in the general population.23 Such individuals may display difficulties adhering to rules, reluctance to accept the advice of authority figures, and failure to learn from previous mistakes, all potential contributors to higher rates of noncompliance and ultimately more adverse events. Concerns about the negative impact on transplant outcome are clear. In the Report of the Consensus Conference on Candidate Selection for Heart Transplantation-1993,24 65% of participants (surgeons and cardiologists) indicated that presence of a personality disorder should be considered as a contraindication to transplant. An additional 30% indicated that this criteria "may be" a contraindication. The presence of a personality disorder was consensually ranked as the seventh most important of 24 psychosocial variables, exceeded only by current alcohol, cocaine, or tobacco abuse, current incarceration, and noncompliance with medical therapy.24 Given the potential exclusionary nature of this disorder, the scarcity of literature concerning the impact of personality disorders on transplantation is troublesome. Both positive and negative outcomes have been reported for individuals who underwent transplantation despite the presence of a premorbid personality disorder,17 25 suggesting that further research into the interaction between personality disorders and the transplant process is indicated.

While many of the current samples’ personality clusters are similar to those found in other studies, conclusions regarding the impact of both reactive and more long-standing (eg, personality disorders) psychological disturbances on medical treatment must be tempered. Factors limiting the generalization of our results include the fact that outcome variables were not examined in the present study. Given the shortage of usable organs and the fact that the majority of evaluated candidates do not undergo transplantation, generating a significant sample size to determine long-term outcome as a factor of personality variables is the subject of ongoing work by the authors. Hence, the behavioral correlates of each of the present samples’ MMPI-2 cluster profiles is unknown as the relationship between demonstrating a trait and exhibiting a behavior is not absolute. For example, the few reports26 27 examining the influence of personality on mortality suggest no clear association between premorbid character traits and ultimate survival (although the nature of the transplant process may weed out those with severe pathology who are most likely to be noncompliant). While preliminary research28 has suggested an association between personality characteristics and post-lung transplant compliance, further investigations are necessary to fully explore the impact of personality style on treatment adherence, which appears to be a multidetermined behavior.29 In addition, there are statistical limitations of the cluster analysis method. While superior to presenting simple mean profiles, there is variability in each cluster that could modify the probability that potential behaviors are expressed. Finally, while the profiles of the individuals with end-stage lung disease were contrasted against the normative sample of the MMPI-2, inclusion of a comparison group of patients with other long-standing medical illnesses would allow clarification if results were a unique reaction to lung disease or more general responses to life-threatening conditions.

Despite the mentioned limitations, assessment of psychological reaction to end-stage lung disease appears to have utility for the treating physician. For example, studies12 26 30 have been mixed in regards to the improvement of psychiatric syndromes after transplantation, suggesting that early and ongoing intervention for emotional distress is appropriate. Perhaps more important is the fact that the majority of individuals with COPD who are evaluated for transplantation do not receive this procedure and will have to continue to cope with their physical limitations. Our study has identified a sizable proportion of individuals who displayed emotional distress at the time of evaluation. In addition, we believe that certain patients (eg, cluster 2) are at risk for developing such symptoms as they face the prospect of continuing to live with their COPD. Thus, the treating physician will not only have to manage the chronic medical condition but also need to consider adjunctive treatment for emotional distress for a sizable number of patients with end-stage lung disease in order to provide an optimal quality of life. In addition to general quality of life, psychological coping styles have been linked with important aspects of disease management and physician-patient interactions. For example, willingness and success at engaging in rehabilitation was highly influenced by personality style as measured by the MMPI-2.31 32 Personality style and psychological reaction to physical illness has also been shown to affect a patient’s need for medical information and success at coping with illness.33 In addition, decisions about the course of treatment, such as whether or not to proceed with invasive procedures, can be influenced by an individual’s character traits.34

Thus, the present study identified five unique personality styles of coping in relation to end-stage lung disease. Additionally, the data gathered will eventually serve as a prospective examination of psychopathology in the minority of individuals who, given the reality of current practice, ultimately receive transplantations. The primary value of this research, however, appears to be in the detection of a sizable number of patients who will not receive a transplant (or spend time on a waiting list) and are displaying or at risk for developing psychiatric symptoms that will need to be managed as part of their medical care. Thus, the current study reinforces the need to screen for psychiatric conditions in patients with end-stage lung disease. The presence of problematic personality characteristics or adjustment patterns as detected by psychological screening could trigger interventions to reduce potential negative outcomes, improve quality of life, and help to optimally manage this chronic disease process.


   Conclusion
TOP
 Abstract
 Introduction
 Materials and Methods
 Results
 Discussion
 Conclusion
References
 
The present study elucidated five different psychological styles of coping with end-stage lung disease that may affect quality of life, interactions with the pulmonary treatment team, and the need for ancillary psychiatric interventions. How these individuals express physical and psychological distress, along with the necessity of mental health intervention, needs to be considered during the evaluation of patients with end-stage lung disease. Further research is suggested to replicate these findings and also to investigate how these personality styles affect treatment outcome and ultimate quality of life not only in eventual transplant recipients but also in the larger percentage of individuals who will continue to live with this chronic medical condition.


   Footnotes
 
Abbreviation: MMPI = Minnesota Multiphasic Personality Inventory

Received for publication October 3, 2000. Accepted for publication April 5, 2001.


   References
TOP
 Abstract
 Introduction
 Materials and Methods
 Results
 Discussion
 Conclusion
 References
 

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