Psychosomatics 40:479-485, December 1999
© 1999 The Academy of Psychosomatic Medine
A Psychometric Normative Database for Pre-Liver Transplantation Evaluations
The Florida Cohort 1991–1996
Randi M. Streisand, Ph.D.,
James R. Rodrigue, Ph.D.,
Samuel F. Sears, Jr., Ph.D.,
Michael G. Perri, Ph.D.,
Gary L. Davis, M.D., and
Christine G. Banko, Ph.D.
Received December 22, 1998; revised April 5, 1999; accepted April 13, 1999. From the Division of Oncology, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania; the Departments of Clinical and Health Psychology and Medicine, University of Florida Health Science Center, Gainesville, Florida; and the Department of Behavioral Pediatrics and Psychology, Nemours Children's Clinic, Jacksonville, Florida. Address correspondence and reprint requests to Dr. Rodrigue, Department of Clinical and Health Psychology, University of Florida Health Science Center, P.O. Box 100165, Gainesville, FL 32610–0165.
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ABSTRACT
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In this study, the authors describe the psychological characteristics of a large sample (N=407) of adult patients evaluated for liver transplantation, and provide normative data on commonly used measures of cognitive functioning, affective status, psychosocial adjustment, coping, quality of life, and life satisfaction. The normative data suggest that the study's liver transplant candidates have poorer cognitive functioning and health-related quality of life when compared with available normative comparison groups, yet the former group is more comparable to medically ill peers on measures of anxiety, depression, psychosocial adjustment, and coping. Data also suggest a high rate of affective disturbance in liver transplant candidates. Results indicate the utility of normative data, such as the authors', for providing an appropriate comparison group for liver pretransplant candidates.
Key Words: Liver Transplantation • Transplantation • Psychological Adjustment
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INTRODUCTION
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Much emphasis has been placed on the transplant evaluation process and patient selection as the demand for viable organs continues to exceed available supply. Given the relevance of psychological factors to selection of transplant patients, psychological evaluations have become paramount to the pretransplantation process.1,2 Although patient selection criteria are often variable within and across institutions, several psychosocial and behavioral factors have been considered to be either absolute or relative contraindications to transplantation. These factors include affective disturbances, personality disorders, active substance use or dependence, poor compliance with the medical regimen or requested life-style changes, inadequate social support, and failure to comprehend treatment or care.3,4
Psychological factors are also important during the selection process, given their relevance to posttransplant outcome. Several studies have specifically examined the role of risk factors or pretransplant functioning (i.e., psychological and physical distress, perception of health status, quality of life, life satisfaction) in predicting posttransplant outcome, including morbidity and mortality.5–12 Conclusions about general functioning are difficult to make, however, without the availability of normative data for liver transplant candidates across a range of psychological assessment tools. Furthermore, assessment of outcome and other factors is often specific to the transplant center, making comparisons between sites difficult to perform.
Although the importance of normative data on psychological functioning has been described in the transplant literature,2,6,13–16 relatively little published normative data exists. Normative data can provide health professionals with information to better evaluate potential candidates, allowing specific reference to other candidates evaluated for transplantation. Even in cases where relative functioning, or change over time, is an outcome measure, baseline measures without appropriate norms would be insufficient for drawing conclusions. Furthermore, normative data can help lend predictive utility to posttransplant outcome.
Recent efforts to systematically update psychometric norms are encouraging and, in some instances, impressively comprehensive.13,17–22 Since the majority of these normative samples have included heart, bone marrow, and kidney transplant candidates, there remains a need for current, comprehensive normative data on liver transplantation candidates. Like other transplant candidates, those being evaluated for possible liver transplantation typically confront numerous potential stressors, including changes in physical health status, cognitive functioning, psychological status, and interpersonal relationships.2,23 Therefore, the purpose of this report is to present current norms from a large sample of liver transplantation candidates on a battery of psychological tests. In addition, we examine differences between our obtained norms and published psychometric norms, if available, as well as the relationship between psychosocial functioning and disease severity.
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METHODS
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Subjects
The sample included 407 adults who underwent comprehensive liver pretransplantation evaluation at Shands Hospital at the University of Florida Health Science Center from January 1991 to December 1996. Of this patient sample, 183 later received transplants. The sample is predominantly male (60%), white (82%), and married (62%). The patients ranged in age from 18 to 71 years (mean: 49.7, standard deviation [SD]: 12.3), and mean educational level was 12.1 years (SD: 2.6). The majority of the patients described themselves as medically disabled (62%). The most prevalent diagnoses were hepatitis C (59%) and cirrhosis (33%), and mean disease severity (according to Childs-Pugh,24) was 7.9. Mean disease duration was difficult to determine since patients typically were diagnosed at a point considerably later than symptom onset. Forty-six percent of the sample had alcohol-related liver disease or reported a history of moderate-to-heavy alcohol use. Information on the transplant eligibility criteria for patients with alcohol-related liver disease is available from the second author (J.R.) upon request.
Procedure
The patients were seen for psychological evaluation as part of a comprehensive, interdisciplinary pretransplant assessment. During the study period, it was the policy of the transplant program that all prospective transplant candidates receive a psychological evaluation before a final listing decision from the medical review board. In addition to a clinical interview, the patients completed a series of psychological tests to assess cognitive functioning, depression, anxiety, coping resources, health-related quality of life, and life satisfaction. There were variations in the assessment battery completed across patients because of scheduling conflicts, managed care restrictions, patient fatigue, deterioration in medical condition during the evaluation, and periodic changes in the assessment protocol. The majority of the patients (n=355, 87%) was evaluated on an outpatient basis.
Measures
Six domains of functioning were assessed (Table 1). In all instances, the measures described were selected on the basis of their psychometric adequacy and relevance to selection criteria deemed important by the transplant program.
Cognitive Functioning.
The vocabulary, block design, arithmetic, and digit span subtests from the Wechsler Adult Intelligence Scale-Revised (WAIS-R) were used to provide an index screening of intellectual functioning. Such measures of cognitive functioning are important to examine a patient's ability to comprehend the risks and benefits of transplantation and to provide informed consent for the procedure. The vocabulary and block design subtests assess verbal comprehension and perceptual organization abilities, respectively, and are most highly correlated with full-scale IQ.25 Arithmetic and digit span were administered as additional indices of mental processing and short-term memory. The age-corrected subtest scaled scores are reported for our sample.
Affective Functioning.
The 21-item Beck Depression Inventory (BDI)26 assesses the presence and frequency of both cognitive-affective and somatic symptoms commonly associated with depression. The 40-item State-Trait Anxiety Inventory (STAI)27 is a self-report measure of both current and dispositional anxiety symptoms. Both of these measures are commonly used in the assessment of transplant candidates.5,15–17
Psychosocial Adjustment.
The 46-item Psychosocial Adjustment to Illness Scale–Self Report (PAIS-SR)28 is a measure of how one adjusts to a current medical condition. The scale consists of seven domains: health care orientation, vocational environment, domestic environment, sexual relationships, extended family relationships, social environment, and psychological distress. The PAIS-SR has been used extensively in measuring the adjustment of adults with cancer, HIV, heart disease, and pulmonary illness.
Coping.
The 19-item Medical Coping Modes Questionnaire (MCMQ)29 measures three coping strategies—confrontation, avoidance, and acceptance-resignation—used by adults with physical health problems. Coefficient alphas for this measure range from 0.67 to 0.70.
Quality of Life.
Health-related quality of life was assessed in two ways. First, the SF-36 Health Survey30 measures quality of life across eight domains: physical functioning, role-physical, bodily pain, general health, vitality, social functioning, role-emotional, and mental health. Higher scores represent a more satisfactory health status. Adequate test-retest reliability and internal consistency (alphas 0.77 to 0.92) have been reported. Second, the Transplant Symptom Frequency Questionnaire (TSFQ)6,17 assesses the frequency and intensity of 35 symptoms common to transplant candidates and recipients. For each symptom, respondents indicate its frequency of occurrence and whether it is a problem for them. The TSFQ has been found to be useful in detecting symptom change from pre- to posttransplantation.31
Life Satisfaction.
The 5-item Satisfaction with Life Scale (SWLS)32 measures global satisfaction with one's life and has been shown to be both internally consistent (alpha=0.87) and stable (2-month test-retest reliability=0.82).
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RESULTS
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Means, SDs, and quartiles for all measures are presented by domain assessed in Table 2, Table 3, Table 4, and Table 5. Comparisons between our liver transplant candidate sample and the most recently published normative samples were performed, using the Welchs' approximate test statistic.33 The most appropriate normative data available were used for purposes of comparison. When available, comparisons based on medical or surgical samples were used. All reported between-groups effects are significant at the P<0.05 level. Pearson product-moment correlation coefficients were computed to examine relationships between disease severity and the dependent measures. To control for the large number of correlational analyses, only those coefficients significant at the P<0.01 level are interpreted.
With the exception of block design, which fell in the low-average range, mean scores on the vocabulary, arithmetic, and digit span subtests of the WAIS-R fell in the average range and within one SD of the population-based sample mean. However, our sample's mean scores on all subtests were significantly lower than those reported for other transplant candidates.17 WAIS-R subtest scores were all significantly and negatively correlated with disease severity scores (vocabulary, r=-0.26; block design, r=-0.39; arithmetic, r=-0.33; digit span, r=-0.37).
Assessment of affective functioning consisted of the BDI and STAI. The BDI has a possible range of scores from 0 to 63, with the following clinical descriptors: 0–9 no depression, 10–16 mild depression, 17–29 moderate depression, and 30–63 severe depression. For the 210 patients who completed this measure, 95 (45%) reported no depressive symptoms, 78 (37%) reported mild depression, 31 (15%) reported moderate depression, and 6 (3%) met criteria for severe depression. Thus, 55% of our sample reported at least mild symptoms of depression. A comparison with a large normative database of heart transplant candidates at our institution17 revealed no significant group differences. Because some symptoms of depression may reflect liver disease progression (e.g., excessive fatigue, poor appetite, weight gain) and may artificially elevate total BDI scores, we report data separately for cognitive-affective and somatic symptoms (Table 2). BDI total (r=0.32), cognitive-affective (r=0.23), and somatic (r=0.56) scores were significantly correlated with disease severity scores. STAI scores can range from 20 to 80 for each of the two subscales, with higher scores indicating more anxiety. While group comparisons with other samples yielded no significant differences, higher levels of state (r=0.61) and trait (r=0.47) anxiety were positively associated with disease severity. Moreover, 39% of our sample reported state anxiety scores in the clinical range, and 28% had clinically elevated trait anxiety scores.
For psychosocial adjustment to illness, PAIS-SR scores were generally comparable to those of other transplant candidates evaluated at our institution. However, psychological distress scores were significantly higher for our liver transplant candidate sample when compared with heart, kidney, lung, and bone marrow transplant candidates. Several of the scales were associated with disease severity, with the pattern of correlations indicating that poorer psychosocial adjustment is associated with higher disease severity (r range=0.31 for health care orientation to 0.67 for vocational environment).
The MCMQ subscale scores of our liver transplant candidates all were significantly different from those of other medical patients,29 but not other transplant candidates.17 Specifically, our transplant candidates report higher confrontation scores and lower avoidance and acceptance-resignation scores, compared with adults with heart disease and cancer, but have scores generally comparable to those being evaluated for possible heart transplantation. Higher avoidance scores were positively associated with higher disease severity (r=0.66). Also, in light of past research findings,15,16 we examined the relationship between coping strategies and affective functioning and found that higher avoidance scores were positively correlated with STAI state (r=0.49) and trait (r=0.62) scores as well as BDI total score (r=0.48).
On the quality-of-life indices, our sample of liver transplant candidates obtained scores significantly lower than an otherwise healthy normative sample on all eight SF-36 scales. Perhaps more surprisingly, our sample means were also significantly lower than those reported by normative samples of patients with chronic obstructive pulmonary disease, recent acute myocardial infarction, diabetes, and congestive heart failure.30 Correlational analyses showed that all SF-36 scales were significantly and negatively correlated with disease severity (r range=-0.21 for bodily pain to -0.67 for physical functioning). On the TSFQ, our liver transplant candidates reported significantly higher symptom frequency and problem scores when compared with other transplant candidates.17 When examining individual symptoms, we found that fatigue was the most common symptom reported, with 79% of the sample reporting that they regularly experienced fatigue. Over a third of the candidates also reported "often" or "always" experiencing the following symptoms: lack of sleep, changed bodily appearance, pain, swollen ankles, poor concentration, decreased sexual interest, and poor memory. Symptoms identified as most problematic for at least a third of the sample included fatigue, lack of sleep, breathing difficulties, changed bodily appearance, pain, diarrhea, swollen ankles, poor concentration, decreased sexual interest, weight gain, poor memory, and anxiety. Correlational analyses showed that higher symptom frequency (r=0.53) and higher problem (r=0.42) scores were positively associated with greater disease severity.
Finally, the mean SWLS score for our liver transplant candidates was comparable to that reported by other transplant candidates.17 These scores were not significantly correlated with disease severity.
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DISCUSSION
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In this report, we have presented recent normative data from a very large sample in hopes of providing a psychometric database for clinical and research use involving liver transplant candidates. Norms are presented for several domains of psychosocial functioning that are frequently the focus of assessment; namely, cognitive functioning, depression, anxiety, adjustment to illness, coping strategies, health-related quality of life, and satisfaction with life. This comprehensive normative database provides clinicians and researchers with a convenient source for making comparisons across multiple psychological instruments. These psychometric norms, while geographically limited to the southeastern United States, could be used in conjunction with the instruments' original normative samples in making evaluative statements about the psychological functioning of liver transplant candidates.
In addition to the provision of psychometric norms, there are several noteworthy observations about the data. First, disease severity, as measured by the Child's-Pugh score, was highly correlated with several indices of psychological functioning. Perhaps not surprisingly, higher disease severity scores were associated with poorer cognitive functioning, more depression and anxiety, poorer psychosocial adjustment to illness, more frequent use of avoidant coping strategies, lower perceived health-related quality of life, and higher symptom frequency. These findings have important implications for the psychological assessment of liver transplant candidates and listed patients who are in advanced stages of disease progression. With the increasing discrepancy between patients who could benefit from liver transplantation and the availability of donor organs,34 we can expect that more patients will present for evaluation at a time when their disease severity is rather high. Moreover, increased numbers of patients listed for liver transplantation will experience significant disease progression before actual transplantation. All liver transplant programs should consider the systematic psychological evaluation of both transplant candidates and wait-listed patients.
A second interesting finding is that, while this sample of liver transplant candidates appeared to be functioning at levels comparable to other adults with chronic physical illness, their scores across multiple domains of health-related quality of life and symptom frequency reflect significantly more physical debilitation and lower functional status overall. Not only did the majority of our sample identify themselves as medically disabled, but also they reported generally low levels of physical activity, vitality, and general health secondary to their liver disease. Moreover, they report frequent, and often extreme, interference with normal daily self-care activities and social activities. While we are unaware of any published quality-of-life data on liver transplant candidates that would allow for appropriate comparisons to be made, our own institutional data indicate that these liver transplant candidates are likely to present with significantly more impaired functional status than other patients with end-stage disease awaiting evaluation for transplantation.17 The impact of such physical limitation on psychological adjustment, coping resources, interpersonal relationships, and posttransplant outcome require further empirical evaluation.
Over one-half of the patients being evaluated for liver transplantation reported at least mild levels of depression, and over one-third had clinically elevated levels of anxiety. An additional 28% of the sample reported anxiety symptoms that were preexisting and likely more dispositional in nature. These findings have several implications. The incidence of depression and anxiety in liver transplant candidates may be higher than previously reported,16 and these symptoms should be reassessed at the time of each return clinic appointment. Also, prior research with other transplant patients5,6 suggests that the presence of significant depression and/or anxiety before transplantation places patients at risk for increased morbidity and mortality after transplantation. Consequently, there is a need to implement and evaluate the effectiveness of psychological interventions in reducing affective disturbance and in improving posttransplant morbidity and mortality rates. The BDI and STAI may be useful screening tools, although the diagnosis of depression or anxiety would also necessitate a comprehensive clinical interview.
The finding that avoidant coping strategies were associated with a higher frequency of negative affect is consistent with our earlier finding15 and the findings of others.21 While coping strategies may change throughout the course of illness, we have consistently found in our transplant research program that patients who avoid talking about their illness with others, actively distract themselves to avoid thinking about their illness, and who actively avoid seeking additional information about their illness or its treatment tend to be at higher risk for poor psychological adjustment. The assessment of patients' preferred coping strategies should be completed at the time of evaluation, since such findings may have important implications for how best to facilitate adjustment throughout the transplantation process. The MCMQ is a rapid assessment tool that provides information about one's use of three common coping strategies, and we are presently examining its psychometric properties for continued use with transplant candidates and recipients.
Surman23 identified many of the unique challenges facing patients with end-stage liver disease and described the need for careful psychological evaluation of both liver transplant candidates and recipients. Early identification of patients who might benefit from psychological and/or pharmacological intervention is needed. Some patients will make it to transplantation and others, undoubtedly, will not. Nevertheless, the availability of psychological services to enhance the psychosocial adaptation of living with a chronic and progressive illness as well as to improve the likelihood of better physical outcomes may be an essential component of the comprehensive health care services offered to transplant patients. The comprehensive normative psychometric data included in this report represents an important first step in the assessment of each liver transplant candidate's need for psychological intervention.
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REFERENCES
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-
Olbrisch ME, Levenson JL: Psychosocial assessment of organ transplant candidates: current status of methodological and philosophical issues. Psychosomatics 1995; 36:236–243[Abstract/Free Full Text]
-
Rodrigue JR, Greene AF, Boggs SR: Current status of psychological research in organ transplantation. 1994; 1:41–70
-
Levenson JL, Olbrisch ME: Psychosocial evaluation of organ transplant candidates: a comparative survey of process, criteria, and outcomes in heart, liver, and kidney transplantation. Psychosomatics 1993; 34:314–323[Abstract/Free Full Text]
-
Kay J, Bienenfeld D: The clinical assessment of the cardiac transplant candidate. Psychosomatics 1991; 32:78–87[Free Full Text]
-
Rodrigue JR, Pearman TP, Moreb J: Morbidity and mortality following bone marrow transplantation: predictive utility of pre-BMT affective functioning, compliance, and social support stability. International Journal of Behavioral Medicine (in press)
-
Sears SF, Rodrigue JR, Greene AF, et al: Predicting quality of life with a pre-transplantation assessment battery: a prospective study of cardiac recipients. Journal of Clinical Psychology in Medical Settings 1995; 2:335–355
-
Colon EA, Callies AL, Popkin MK, et al: Depressed mood and other variables related to bone marrow transplantation survival in acute leukemia. Psychosomatics 1991; 32:420–425[Abstract/Free Full Text]
-
Hicks FD, Larson JL, Ferrnas CE: Quality of life after liver transplant. Res Nurs Health 1992; 15:111–119[Medline]
-
Knechtle SJ, Fleming MF, Barry KL, et al: Liver transplantation in alcoholics: assessment of psychological health and work activity. Transplant Proc 1993; 25:1916–1918
-
Kober B, Kuchler TH, Broelsch CH, et al: A psychological support concept and quality of life research in a liver transplantation program: an interdisciplinary multicenter study. Psychother Psychosom 1990; 54:117–131[Medline]
-
Leyendecker B, Bartholomew U, Neuhaus R, et al: Quality of life of liver transplant recipients. Transplantation 1993; 56:561–567[Medline]
-
Moore KA, Jones RMcL, Angus P, et al: Psychosocial adjustment to illness: quality of life following liver transplantation. Transplant Proc 1992; 24:2257–2258
-
Hecker JE, Norvell N, Hills H: Psychologic assessment of candidates for heart transplantation: toward a normative database. J Heart Transplant 1989; 8:171–176[Medline]
-
Greene AF, Sears SF: Psychometric assessment of cardiac transplantation candidates. Journal of Clinical Psychology in Medical Settings 1994; 1:135–147
-
Rodrigue JR, Davis GL, Howard RJ, et al: Psychological adjustment of liver transplant candidates. Clin Transplant 1993; 7:227–229
-
Rodrigue JR, Boggs SR, Weiner RS, et al: Mood, coping style, and personality functioning among adult bone marrow transplant candidates. Psychosomatics 1993; 34:159–165[Abstract/Free Full Text]
-
Sears SF, Rodrigue JR, Sirois B, et al: Extending psychometric norms for pre-cardiac transplantation evaluations: the Florida cohort 1990–1996. Journal of Clinical Psychology in Medical Settings 1999; 6:303–316
-
Putzke JD, Williams MA, Millsaps CL, et al: Heart transplant candidates: a neuropsychological descriptive database. Journal of Clinical Psychology in Medical Settings 1997; 4:343–355
-
Deshields TL, McDonough ME, Mannen K, et al: Psychological and cognitive status before and after heart transplantation. Gen Hosp Psychiatry 1996; 18(suppl):62S–69S
-
Baker F, Marcellus D, Zabora J, et al: Psychological distress among adult patients being evaluated for bone marrow transplantation. Psychosomatics 1997; 38:10–19[Abstract/Free Full Text]
-
Greco P, Brickman AL, Routh DK: Depression and coping in candidates for kidney transplantation: racial and ethnic differences. Journal of Clinical Psychology in Medical Settings 1996; 3:337–353
-
Trzepacz PT, Brenner R, Van Thiel DH: A psychiatric study of 247 liver transplant candidates. Psychosomatics 1989; 30:147–153[Abstract/Free Full Text]
-
Surman OS: Psychiatric aspects of liver transplantation. Psychosomatics 1994; 35:297–307[Abstract/Free Full Text]
-
Pugh RNH, Murray-Lyon IM, Dawson JL, et al: Transections of the oesophagus for bleeding varices. Br J Surg 1973; 60:646–649[Medline]
-
Ryan JJ, Larsen J, Prifitera A: Validity of the two- and four-subtest short forms of the Wechsler Adult Intelligence Scale—Revised in a psychiatric sample. J Consult Clin Psychol 1983; 51:460–469[Medline]
-
Beck AT, Steer RA, Garbin MG: Psychometric properties of the Beck Depression Inventory: twenty-five years of evaluation. Clin Psychol Rev 1988; 8:77–100
-
Spielberger CD: Manual for the State-Trait Anxiety Inventory. Palo Alto, CA, Consulting Psychologists Press, 1983
-
Derogatis LR, Lopez MC: Psychosocial Adjustment to Illness Scale. Baltimore, MD, Clinical Psychometric Research, 1983
-
Feifel H, Strack S, Nagy VT: Coping strategies and associated features of medically ill patients. Psychosom Med 1987; 49:616–625[Abstract/Free Full Text]
-
Ware JE: SF-36 Health Survey: manual and interpretation guide. Boston, MA, Nimrod Press, 1993
-
MacNaughton KL, Rodrigue JR, Cicale M, et al: Health-related quality of life and symptom frequency before and after lung transplantation. Clin Transplant 1998; 12:320–323[Medline]
-
Diener E, Emmons RA, Larsen RJ, et al: The Satisfaction With Life Scale. J Pers Assess 1985; 49:71–75[Medline]
-
Welchs BL: On the comparison of several mean values: an alternative approach. Biometrika 1951; 38:330–336[Free Full Text]
-
United Network for Organ Sharing (UNOS): 1998 Annual Report of the U.S. Scientific Registry for Transplantation Recipients and the Organ Procurement and Transplant Network. Richmond, VA, UNOS, Division of Transplantation
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J. Brown, J. H. Sorrell, J. McClaren, and J. W. Creswell
Waiting for a Liver Transplant
Qual Health Res,
January 1, 2006;
16(1):
119 - 136.
[Abstract]
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ABSTRACT
INTRODUCTION
