The psychosocial impact of systemic lupus erythematosus and rheumatoid arthritis.код для вставкиСкачать
13 THE PSYCHOSOCIAL IMPACT OF SYSTEMIC LUPUS ERYTHEMATOSUS AND RHEUMATOID ARTHRITIS MATTHEW H. LIANG, MALCOLM ROGERS, MARTIN LARSON, H O L L E Y M. E A T O N , BENJAMIN J. MURAWSKI, J E N N I F E R E:. TAYLOR, JULIE SWAFFORD, and PETER H. S C H U R Seventy-six ambulatory patients with systemic lupus erythematosus and a comparison group of 23 ambulatory patients with rheumatoid arthritis were given a structured interview and standard psychological tests, including the Minnesota Multiphasic Personality Inventory, to determine the psychosocial impact of the illness. Both groups had significantly elevated scores on 3 Minnesota Multiphasic Personality Inventory scales: Hypochondriasis, Depression, and Hysteria. Psychological difficulties are an integral part of systemic lupus erythematosus and are as common as most other manifestations. The implications for clinical practice are discussed. The prevalence of psychological symptoms in systemic lupus crythematosus (SLE) is between 3 and 65% (1-8). Reported symptoms include depression, anxiety, depersonalization, withdrawal, hallucination, cognitive problems, and frank psychosis. Whether psychiatric symptoms are an integral part of lupus, are related to the stress of having a serious chronic illness, From the Departments of Medicine. Rheumatologyllmmunology, and Psychiatry. Brigham and Women’s Hospital; the Department of Biostatistics, IIarvard School of Public Health; the Robert B. Brigham Multipurpose Arthritis Center; and Harvard Medical School, Boston, Massachusetts. Supported by Multipurpose Arthritis Center grant AM20580. NIH grants AM1 1414, and AM05577, and by agrant from the Lupus Foundation of America. Matthew H. Liang. MI), MPM; Malcolm Rogers, MD: Martin Larson, ScD; Holley M. Eaton, IW; Benjamin J. Murawski, PhD; Jennifer E. Taylor, BA: Julie Swafford, MPH; Peter H. Schur, MD. Address reprint requests to Matthew H. Liang, MD, MPH. Multipurpose Arthritis Center. Brigham and Women’s IIospital, 75 Francis Street. Boston, MA 02115. Submitted for publication March 2. 1983: accepted in revised form August 25, 1983. Arthritis and Rheumatism, Vol. 27, No. 1 (January 1Y84) or are the result of drugs used in treating lupus (such as corticosteroids) is frequently difficult to determine in the individual patient. Existing studies on this subject are based on selected patients (ill or hospitalized), without controls or standardized measures of psychiatric symptoms (5). Improved understanding of psychological symptoms in SLE patients who are not acutely ill would help us in managing S L E patients and in defining the boundary between normal symptoms in reaction to an illness and the psychological manifestations of a multisystem disease (9). This study reports the psychological symptomatology assessed by a standardized interview and psychological testing, in a sample of ambulatory SLE patients and a comparison group of patients with rheumatoid arthritis (RA). PATIENTS AND METHODS Patient selection. Subjects were recruited through news media and letters to 132 active patients from our Lupus Clinic. Patients were asked to participate in a study “to help us to understand what it’s like to have lupus.” A total of 76 SLE patients participated. One hundred sixty patients with RA, randomly selected from a registry of RA patients at our hospital, were sent a similar letter. Twenty-three volunteered to participate after two mailings. Questionnaire and psychological scales. A 55-item questionnaire and a standardized interview gathering demographic, medical history, and psychosocial information were administered after informed consent was obtained. Five trained interviewers were checked for reliability at the beginning of and during the study by review of the taped interviews. Replies to the open-ended questions were transcribed directly from tapes for coding. These responses were categorized by 3 independent observers. Operational rules were established for coding the results, and the interviews LIANG ET AL Table 1. Systemic lupus erythematosus activity index scoring key Date: __ Points* Name: _ _ (Table I). A preliminary chart review of KA patients showed insufficient data to quantify disease activity by the I m s b u r y Technique, American Kheumatism Association Cooperating Clinics, or Ritchie Articular Index. Thus, inactive or somewhat active RA was defined as stable symptoms, no major medication change, and stable functional capacity and/or physical examinatifin. Patients who were worse than their baseline, with either increased number of inflamed joints, decreased functional capacity, new nodules, higher sedimentation rate, or increased morning stiffness, were classified as having moderately active disease. The period of time for assessing disease activity was the last clinic visit prior to the interview, or within a 3-month span of the interview. RESULTS Patient characteristics. SLE patients were mainly white (94%), married (69%),and female (90%). The majority were age 50 or younger (73%), with disease duration 10 years or less (74%). RA patients were generally married (65%) and female (74%). SLE patients were younger than RA patients (mean age 38.0 versus 44.5 years) and had shorter disease duration (mean duration 7.8 versus 11.7 years). Sixty percent of all patients had some college education, and 45% reported annual family income of $20,000 or higher. Many patients (71%) reported that it had been difficult to obtain a definitive diagnosis. This was more often the case for SLE patients (76%) than for RA patients (57%). 35. Immune complex by any assay or falling complement (CH50, C3, ....................... 1 . Table 2. Qualitative aspects of rheumatic diseasc (% positive responses) Characteristic were recoded by one person blinded to the results of the other sections of the study. Three standardized psychological tests were given: the Schedule of Recent Events (SKE) ( l O , l l ) , a measurement of life change; the Minnesota Multiphasic Personality Inventory (MMPI) (12), a measure of personality traits; and the Health Locus of Control scale (HLC) (13), a measure of the degree to which a person feels he/she has control over hidher health. Clinical data. Medical data were verified by review of all available medical information by a rheumatologist blinded to the results of the psychometric tests and interviews. SLE disease activity was rated by a standardized system Have trouble keeping a job Have decreased independence Have lowered spirits Biggest problem None Fatigue Dependence, restriction Other Biggest fear None Worsening disease Disability Death Other Believe stress increases illness Never Sometimes Frequently Self-reported health Poor to Fair Well to very well Rheumatoid arthritis (n = 23) All Lupus subjects (n = 75) (n = 98) 35.0 69.6 72.7 48.4 69.3 69.9 45.1 69.4 70.5 4.8 9.5 76.2 9.5 8.1 27.0 28.4 36.5 7.4 23.2 38.9 30.5 19.0 19.0 42.9 0.0 19.0 25.3 26.7 14.7 22.7 10.7 24.0 25.0 20.8 17.7 12.5 30.4 43.5 26. I 17.6 44.6 37.8 20.6 44.3 35.1 34.8 65.2 38.7 61.3 37.8 62.2 15 PSYCHOSOCIAL IMPACT OF SLE AND RA The sample consisted of patients with generally mild disease: 65% of SLE patients and 67% of RA patients had inactive or somewhat active disease. Two-thirds of both groups described their health as “well” to “very well,” while a third described it as “poor” to “fair.” Qualitative aspects of rheumatic disease (Table 2). Loss offrncfion. Fifteen questions probed for the psychological impact of SLE and RA (examples in Table 2). Although both groups viewed decreased independence and function as the “biggest problem” caused by their disease, S I X patients described their limitations in terms of fatigue and avoidance of the sun, while RA patients more commonly mentioned mobility problems. Emotional reactions. About 70% of SLE and of RA patients reported having ”lowered spirits” for substantial periods of time; the lack of “normal” controls makes interpretation difficult. Interestingly, roughly 50% of each group also reported that, at times, Table 3. their illness had a positive effect on their spirits, often described in terms of being “thankful for what I’ve got.” The groups differed in describing their biggest fear. Death was described as a major worry among SLE patients (23%) but not by any RA patients, whose greatest fear was physical disability. This difference was statistically significant (x’ = 15.34, df = 2, P < 0,001). One woman with SLE described her fears: I wasn’t dying of lupus but nevertheless I felt I was. It was a constant preoccupation with me and it has never really quite left me. I don’t think a day goes by that I don’t think in some terms about dying. Although by now I realize I’m not rationally afraid I’m popping off at any minute, I think it forever destroyed the sense of unreality it has for most people. For me, it became very real and very concrete at an early age and I’ve been fussing with it ever since. SLE and RA patients had similar Health Locus Percent of subjects reporting various life changes Category changed* Spouse Family Work Financial Habits Social Life change score 0-149 (no life crisis) 150-299 (mild-moderate life crisis) 300- (major life crisis) Rheumatoid arthritis (n = 23) I.upu5 ( n = 74) All subjects (n - 97) 43.5 60.9 34.8 21.7 65.2 39. I 43.2 63.5 40.5 44.6 75.7 60.8 43.3 62.9 39.2 39.2 73.2 55.7 56.5 30.4 13.0 55.4 35. I 9.5 55.7 34.0 10.3 * Life Change Events categorited as follows: Spousc marriage death of spouse pregnancy sexual difficulty separation reconciliation divorce arguments spouse changed work Family (friends) death in family death of friend family health in-law troubles get-togethers new family member moved residence child left home Work (school) boss trouble being fired changed work changed responsibility changed work hours business adjustment retirement new school start school Financial foreclosure change in finances take big loan take small loan Habits (achievements) being jailed sleeping habits eating habits personal habits violation of law personal achievement major illness living conditions Social activity church activity recreation social activity vacation Christmas LIANG ET AL 0 Y D R. A. 0 LUPUS L F K H S D MM?; SbLE“‘ PR Pl sc IIR SI Figure 1. Mean Minnesota Multiphasic Personality Inventory (MMPI) ’I‘-scores: Lie (1,). Frcquency (F), Correction (K), Hypochondriasis (HS), Depression (D), Hysteria (HY). Psychopathic Deviate (PD), MasculinityiFemininity (MF),Paranoia (PA). PsychSchizophrenia . ( S O , Mania (MA). Social Introvcrsion asthenia (IT) (SI); 17 rheumatoid arthritis (KA) patients and 70 systemic lupus erythematosus patients. of Control scores (means were 38.6 and 39.3 respectively), with neither internal nor external locus of control predominating. Approximately 80% of both groups felt stress frequently or sometimes aggravated their illness. This was described in terms of reduced tolerance for sympTable 4. toms and apparent increases in biologic disease activity (“When we have a turmoil in the family, I’m miserable. I just stiffen up all over.”). Stress was also the most frequently listed reason for the onset of the illness (27%), followed by fate (14%), pregnancy (13%), drugs (1 l%), and illness (9%). The responses to “What helps most in coping with disease?” were: having a good attitude (22%), rest (22%), keeping busy (17%), and medications (10%). These percentages were consistent for both diagnoses. Personal relationships. The majority of patients were content with their relationships with their physicians. Only 21% felt that their doctor “could do more to understand their illness.” Also, most patients (79%) felt that their friends and families understood their illness. Commonly reported was the conflict between acknowledging symptoms and accepting the sick role, versus concealing symptoms to appear normal. Many acknowledged their own role in situations in which misunderstanding occurs: On the whole, I don’t think most people understand much at all . . . because the disease is so unknown. I think the only ones that know anything about it are the doctors and the patients themselves. On the other hand, [friends and relativcs] don’t understand a lot because I didn’t make it clear myself. I’ve just understood this lately too, that they expected a lot from me because I was doing a lot that 1 shouldn’t have been doing. Recent l$e changes (Table 3). Ninety-seven patients completed the Schedule of Recent Events for the preceding 6 months, which showed substantial life Minnesota Multiphasic Personality Inventory: mean T-scores (normal score = 50) Payne el al (ref. 14) Present study Kheumatoid arthritis (n = 17) IAlpus (n = 70) Rheumatoid arthriti5 (n = 30) Scalc Mean SD Mean SD Mean SD Lie Frequency Correction Hypochondriasis Depression Hysteria Psychopathic Deviate Masculinity/Fernininit y Paranoia Psychasthenia Schirophrenia Mania Social Introversion 50.8 52.4 56.4 66.3 66.5 67.0 58.2 42.2 59.5 56. I 58.4 51.5 53.9 7.0 16.3 15.3 12.8 12.1 9.3 10.4 9.5 8.0 13.3 13.9 13.2 12.2 50.2 57.5 55.2 66.0 65.8 67.8 56.4 44.0 56.6 59. I 61.5 61.5 56.7 8. I 10.9 9.6 12.8 14.0 10.0 10.3 10.4 9. I 9.3 12.1 12.0 11.7 50.4 52.5 55. I 65.0 67.0 66.7 57.4 50.2 51.7 57.8 56.8 52.3 52.6 8.4 6.2 8. I 11.2 9.4 7.5 9. I 9.4 3.5 8.1 6.8 8.8 8.3 PSYCHOSOCIAL IMPACT OF SLE AND RA Table 5. Percent of subjects with abnormal ( I 2 SD above 50) mean ?’-score. .Minnesota Multiohasic Personality lnventorv Characteristic Rheumatoid arthritis (n = 17) H ypochondriasis Depression Hysteria Psychopathic Deviate MasculinityiFemininity Paranoia Psychasthenia Schizophrcnia Hypomania Social Introversion 35.3 41.2 29.4 5.9 0.0 5.9 23.5 17.7 0.0 11.8 Lupus (n 70) 2 All subjects ( n = 87) 37.1 41.1 38.6 12.9 I .4 7.1 12.9 18.6 7. I 10.0 36.8 41.4 36.8 11.5 I .2 6.9 14.9 18.4 5.8 10.3 changes in SLE and RA patients. Mild to moderate life crisis was experienced in 34% and a major life crisis in 10% of both groups. Sixty-three percent reported one or more changes in the category of family, the most frequent being an alteration in the health of family members (28%) and frequency of family get-togethers (23%). In regard to the relationship with their spouse, an increase in arguments (20%) and sexual problems (16%) were the most frequently reported changes. For most categories, the frequency of life changes was similar in the 2 disease groups, but SLE patients reported more recent changes in social activity (61% versus 39%) and finances (45% versus 22%). Psychological tests. MMPI (Figure I , Table 4). Comparison of published data on KA patients with Coding of binary (0. I ) predictor variables: for analysis of Hypochondriasis, Depression. and Hysteria scores Table 6. __ Variable Diag Sex Marital Educ Age 1 Age2 Durl Dur2 Life changes Spouse Family Work Finance Habit Activity IXU 1 LCU2 Values I = diagnosis of lupus; 0 - rheumatoid arthritis 1 = male; 0 = female I 1 1 1 I 1 1 I 1 1 1 I 1 1 not cohabiting; 0 = cohabitating less than college education; 0 =- college education or more = age 31-50: 0 = other = age 5 1 + ; 0 = other = disease duration 6-10 years; 0 =- other = disease duration I 1 t years; 0 = other - =- changes re spouse;O = none changes re family. friends; 0 = none changes re work: 0 = none changes re finances; 0 = none changes re habits; 0 - none changes re social. recreational activities: 0 = none = life change units 100-199; 0 = other = life change units 200-1-;0 = other = = = = = = 17 similar demographic characteristics to our sample revealed a striking similarity between our patients’ test scores and those of previously studied patient groups (14). Both Payne’s and our study showed marked elevations in Hypochondriasis, Depression, and Hysteria. Also, both groups demonstrated a high frequency of abnormality on those scales, ranging from 3540% (Table 5). The Hypochondriasis, Depression, and Hysteria scores were analyzed by logistic regression techniques (15) with the predictor variables listed in Table 6. Backwards elimination (16) was used to define a baseline model in which all terms were significant at the 0.10 level, then specific factors were tested by comparison of likelihood ratio statistics. The results show that neither diagnosis, disease duration, nor life change scores significantly affected the frequency of abnormality on the Hypochondriasis, Depression, or Hysteria scales. Being married ( P = 0.029), depressed ( P = 0.0014), or hysterical ( P = 0.0001) contributed to a higher frequency of Hypochondriasis. Depression was associated with Hypochondriasis score ( P = 0.0001) and with change in social activity ( P = 0.045). That social activity changes and depression were related is consistent with the observation that depressed persons tend to withdraw from social activities. DISCUSSION This study describes the psychological experience of a sample of volunteer patients with RA or SLE. The response rate for the subjects from our clinic was 20% for SLE and 14% for RA after two solicitations. The response bias probably results in a sample with a high proportion of complaints; thus, the prevalence of psychological symptoms is probably an overestimate. From the data available to us, we cannot gauge our samples’ representativeness relative to the source populations. The primary bias in sampling that we hoped to avoid, that of sampling sick patients, appears to have been minimized since disease severity was generally mild in both groups. The results convey a sense of profound impact of disease upon the psychological and social lives of patients with SLE and RA. They appear to be reacting both to the symptoms of disease and to the life changes created by those symptoms. Important differences in the psychological experiences of patients with SLE and RA are noted. Fear of death is not reported by the RA group, but is seen in nearly a quarter of the lupus 18 patients. Fatigue, avoiding the sun, alteration in appearance (and possibly body image) from skin involvement or steroid therapy, and interference with pregnancy and family planning are especially problematic for lupus patients. Loss of physical function, of independence, and of social interactions were major themes found in interviews of both groups. A large number of patients had altered relationships with family, friends, and spouses, suggesting isolation and conflict. Loss of social activity was significantly correlated with depression, perhaps preceding it in many cases. Increased frequency of arguments and decreased sexual function is further evidence of marital strain. Changes in financial and work status were also noteworthy. Approximately 50% of the patients with SLE and RA reported that the illness had a positive emotional impact at times. Hope and heightened appreciation of remaining activities and relationships in the aftermath of losses were commonly reported. The process resembles “transcendental redirection” described in patients surviving cardiac arrest (17), a reaffirmation of life organized around new priorities. Many patients emphasized the importance of their relationship with their doctor. Most patients benefited from the sense that their doctors understand the psychological and social adjustments required in adapting to the illness. The perceived importance of stress in exacerbating the illness suggests that doctors should help the patient to identify such stresses and reduce them whenever possible. The clear evidence of strain on the spouse and other family members indicates the need to monitor these relationships as well. One of the most striking findings is the marked elevation of MMPI scales for Depression, Hysteria, and Hypochondriasis. The pattern is similar in both SLE and RA patients, and virtually identical with the findings of previous studies of rheumatic disease patients (14,18). By way of contrast, in 5,955 women, aged 40-49, with general medical problems (as opposed to a group composed entirely of rheumatic disease patients), the percentages of abnormally high scores on these scales were 1495, 1096, and 10% ( 1 9 , compared with the 37%, 41%, and 37% in our group. These abnormal scores may reflect adaptive, rather than neurotic responses. The magnitude of present and feared future loss may account for the abnormal MMPI Depression scores. “Depression” and mourning are expected responses to loss. Given the multiplicity of symptoms possible in these illnesses and the continuous need for LIANG ET AL self-monitoring and adjustment of activities, one hesitates to label hypochondriacal symptoms (exaggerated concern about health or bodily or mental sensations) as dysfunctional. Likewise, Hysteria, the conversion of anxiety into somatic symptoms, is more likely to occur in the setting of an existing organic disease. In these patients hysterical symptoms may help rechannel anxiety released by the uncertain, potentially disabling, life-threatening aspects of these diseases. Whether these results indicate neuroses, psychological adjustments, or responses to chronic diseases cannot be answered by a cross-sectional study. The similarity of the MMPI results in SLE and RA patients suggests that they do not reflect an organic process such as cerebritis. Nevertheless, psychosocial difficulties, an integral part of SLE, arc as common as most other manifestations. ACKNOWLEDGMENTS We gratefully acknowledge the contributions of Kobert Katz. Susan Anderson, Cathy Berkman, and the Lupus Foundation, as well as the assistance of Mary Littlefield, Kim Franklin, and the staff of the Multipurpose Arthritis Center. The S L E Activity Indcx was developed in collaboration with John H. Klippcl, M U and with advice from John Decker, MD, both at the National Institutes of Health. REFERENCES 1. Andrew WF: Psychiatric illness associated with system- ic lupus erythematosus. South Med J 68:1207-1210, 1975 2. Ganz VH, Gurland B , Demings W E , Fisher B: The study of the psychiatric symptoms of systemic lupus erythematosus: a biometric study. Psychosom Mcd 34:207-220, 1972 3. Guze SB: The occurrence of psychiatric illness in systemic lupus erythematosus. Am J Psychiatry 123: 15621570, 1967 4. Kremer JM. Rynes KI. Bartholomew I,E, Kodichok L D , Pelton EW, Block EA, Tassinari RB, Silver KJ: Nonorganic, non-psychotic psychopathology (NONPP) in patients with systemic lupus erythematosus. Semin Arthritis Rheum 11: 182-189, 1981 5. Gurland BJ, Ganz VH, Fleiss JL, Zubin J: ‘The study of the psychiatric symptoms of systemic lupus erythematosus: a critical review. Psychosom Med 34: 199-206. 1972 6. Hall KCW, Stickney S K , tiardner CR: Psychiatric symptoms in patients with systemic lupus erythematosus. Psychosomatics 22: 15-24, 1981 7. Heine BE: Psychiatric aspects of systemic lupus erythematosus. Acta Psychiatr Scand 45:307-326, 1969 8. Otto R, Mackay IR: Psychosocial and emotional disturbance in systemic lupus erythematosus. Med J Aus 2:488-493. 1967 9. Kassan SS, Lockshin MD: Central nervous system 19 PSYCHOSOCIAL IMPACT OF SLE AND RA 10. 11. 12. 13. 14. lupus erythematosus: the need for classification. Arthritis Rheum 22:1382-1385, 1979 Holmes TH, Rahe RH: The social readjustment rating scale. J Psychosom Res 11:213-218, 1967 Amundson M, Hart CA, Holmes TH: Manual for the Schedule of Recent Experience (SRE). Seattle, University of Washington Press, 1981 Hathaway SR, McKinley JC: Minnesota Multiphasic Personality Inventory Manual. New York. The Psychological Corp., 1967 Wallston BS, Wallston KA, Kaplan GD, Maides SA: Development and validation of a health locus of control (HLC) scale. J Consult Clin Psycho1 44:580-585, 1976 Payne TC, Leavitt F, Garron DC, Katz RS, Golden HE, 15. 16. 17. 18. 19. Glickman PB, Vanderplate C: Fibrositis and psychologic disturbance. Arthritis Kheum 25:213-217, 1982 Cox DR: The Analysis of Binary Data. London, Chapman and Hall, 1970 Harrell F: The LOGIS'I' procedure, SAS Supplemental Library User's Guide. Cary, North Carolina, SAS Institute Inc.. 1980. pp 83-103 White K, Liddow S: The survivors of cardiac arrest. Psychiatry in Medicine 3:219-225, 1972 Moos RH, Solomon GF: Minnesota Multiphasic Personality Inventory response patterns in patients with rheumatoid arthritis. J Psychosom Res 8: 17-28, 1964 Swenson U, Pearson J, Osborne D: An MMPI Sourcebook. Minneapolis. University of Minnesota Press, 1973 Subspecialty Examination in Rheumatology The American Board of Internal Medicine will offer the subspecialty examination in rheumatology on November 13, 1984. The registration period will be January 2, 1984-April 1, 1984. For further information and application forms, contact American Board of Internal Medicine, 3624 Market Street, Philadelphia, PA, 215243- 1500.