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The psychosocial impact of systemic lupus erythematosus and rheumatoid arthritis.

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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.
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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.
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