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Patients' attitudes and knowledge concerning arthritis.

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Patients’ Attitudes and Knowledge Concerning Arthritis
By MARGARET
H. EDWARDS,
JOHN J. CALABRO
AND MARIONE. WED
A 27-item questionnaire dealing with
attitudes and information concerning
arthritis was administered to 100 patients
attending an arthritis out-patient clinic,
and responses were compared with information obtained from their physicians.
Several discrepancies between patients’
and physicians’ concepts of clinical status and therapy were apparent, as well
as differences in attitudes and beliefs
related to factors of age, education, and
type of arthritis. One-hundred and eighty
forms of treatment had been recommended to the patients by non-professional
persons.
Un questionario de 27 punctos concernente attitudes e informationes relative a arthritis esseva distribuite inter
100 patientes in un clinica de arthritis
pro patientes visitante, e le responsas
esseva comparate con datos obtenite ab
le medicos tractante. Plure differentias
esseva apparente inter patientes e medicos in le conception del stato clinic e
del therapia e etiam in le attitudes e
convictiones relative a factores de etate,
de education, e del typo de arthritis.
Cento e octanta formas de tractamento
habeva essite recommendate a1 patientes
per personas non-professional.
L
ITTLE IS KNOWN of the arthritis patient’s attiudes and knowledge concerning his illness. Among rheumatoid arthritics certain personality
characteristics have been described,l and may be associated with sociocultural factors.2 The feelings and beliefs of the arthritic regarding his disease, and the extent of his own understanding concerning its mechanisms
and management, have not been thoroughly explored.
It is generally assumed that understanding by the patient of his illness
aids the physician in disease management and control. On this assumption
is based the preparation of educational materials, movies and displays directed toward the public at large and patients in particular. Little is known
of the effectiveness of such materials in enhancing patient cooperation
in disease control, although their impact on the public has been evaluated
in certain instance^.^ While misconceptions or lack of knowledge are held
responsible for delay in seeking medical care, there is insufficient evidence
of the effectiveness of educational programs in shortening this delay or
favorably affecting disease management.
The present study was undertaken to determine the requirements for
developing a series of small group education sessions for patients attending
the outpatient Arthritis Clinic of a large municipal hospital associated with
a school of medicine. It was believed that the patients’ present knowledge and
beliefs concerning their illness should first be ascertained so that the group
sessions could be properly directed.
MATERIALS
AND METHODS
A questionnaire was prepared and administered by the same investigator to 121 patients attending the arthritis clinic in Jersey City Medical Center between March 1961
and February 1962. The questionnaire consisted of 28 items to which both subjective and
objective responses were secured. The questions covered the patient’s knowledge of his
425
ARTHRITISAND RHEUMATISM,
VOL. 7 , No. 4 (AUGUST),1964
426
EDWARDS, CALABRO AND WlED
illness including its symptomatology, therapy and prognosis; his general beliefs about
arthritis, including its cause, curability, and the “best” forms of management; his interest
in learning more about arthritis, and his personal reactions to his disease, including its
effect upon his appearance, hon7e and family life. Certain questions dealt with patientphysician relationships. As each question was asked, a spontaneous response was secured,
after which the patient was asked to select appropriate answers from a type-written list.
Sixteen questions, such as “Is your arthritis active at present?” had simple “Yes-No-Don’t
Know” response choices.
The only criteria for the selection of each patient was that he had arthritis, and had
been under the care of the clinic st& for a minimum of three months. Each patient’s age,
sex, race, marital status, schooling, occupation, nationality, and birthplace were recorded. The questionnaire was given to a parent of each of the children with juvenile
arthritis.
A separate questionnaire of ten items was filled out by the physician who saw each
patient clinically on the day he was interviewed. The items in this questionnaire concerned the patient’s diagnostic classification, symptomatology, therapy, work prognosis,
visable degree of defect, and limitation of mobility.
RESULTS
From the questionnaires completed by 121 arthritis clinic patients and 12
physicians, 100 were selected as suitable for review.
Classification of Patients
The age, sex, marital status, and education of the 100 patients according to
their diagnostic classificatioii are shown in figure 1. There were 71 female
and 29 male patients; 67 had a diagnosis of rheumatoid arthritis, 21 of whom
were under 15 years of age. Fifty-four patients were over 45 years of age.
Eleven patients were divorced, nine of whom had a diagnosis of rheumatoid
arthritis. Fifty-three patients had completed more than eight years of schooling, of whom the proportion with a diagnosis of rheumatoid arthritis was
more than twice that of those with degenerative arthritis. There were 13
non-white patients, and 13 patients were foreign-born. The factors of race
and nationality were not analyzed as there were nine classifications. Occupation was found to be significant only in that the proportion of patients classified as “laborer” or “semi-skilled who had degenerative arthritis was nearly
twice that of those with a diagnosis of rheumatoid arthritis.
Duration of Disease and Attitude Toward Curability
Forty-two patients had had their disease less than five years, 26 from five
to ten years, and 32 over ten years. There was little difference among these
groups as regarded their belief whether or not their arthritis was “curable,”
but when the attitude regarding curability was correlated with age, a larger
per cent of patients under 45 years of age, as compared with those over 45
years, hoped to be cured (only two parents of juvenile arthritic children did
not expect the disease to be cured.)
Knowledge of Diagnok
Fifty-six patients correctly identified their diagnosis, and 21 more named a
correct variant. Forty-three of 46 patients with adult rheumatoid arthritis
l
I
Education
variables studied in 100 arthritis patients, by clinical classifica-
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U
Gout
1
99 100
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2.
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96
18
1
91
M a r i t a l Status
Fig. 1.-Selected
tion of disease.
wl r
67
11
C
Adult Rheumatoid Arthritis
46
Sex
Type of Arthritis
0
Number of Patients
r
A
U
M
$
5
h
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wu
428
EDWARDS, CALABRO AND WIED
knew their diagnosis, whereas only seven of 24 persons with degenerative
arthritis did.
When asked whether their disease was “active” or “inactive,” 21 of 79 adult
arthritis patients gave a response opposite to that given by their physicians.
Treatment and Medications
Nineteen medications were listed in the questionnaire for selection by the
patients, and 97 persons checked one or more. Ninety-five persons named
correctly the drug or drugs currently prescribed by their physicians. There
were two errors, and only three patients did not know what medication they
were taking. In 35 instances, however, patients proved to be taking medications for their arthritis in addition to those prescribed by the clinic phyiscians, chiefly vitamins or liniments. Eighty-nine of the patients were receiving
salicylates as the major medication.
There were listed 19 additional modalities of therapy. Each of these was
checked at least once by 86 respondents, the items more frequently mentioned being exercises, heat, paraffin, rest, water therapy, injections, massage
and stretching. As seen in figure 2, heat was prescribed for 70 patients, but
was being used by only 45. Exercises were prescribed 61 times, but were followed by only 52 patients. Massage was prescribed 43 times, but was being
carried out by only 8 patients. There seemed to be a greater tendency for
patients under 45 years of age to ignore “massage.”
The patients were asked 1.0 indicate what they thought was the best drug
or treatment for arthritis. Of the 89 persons on salicylates, 63 mentioned this
as the best treatment. Sixteen patients listed cortisone or a derivative, although only eight were receiving them. Ten persons felt there was no satisfactory treatment.
Beliefs Regarding Cause of Arthritis
Forty-five patients stated they had no idea what caused their arthritis, but
when presented with a suggested list of 19 items, 27 of them made one or
more selections. Of the 82 persons (67 patients, 15 parents) who stated
possible causes of arthritis, 61 had “figured it out” themselves, whereas 21
had been so informed by a physician. The items most frequently checked were
“nerves,” ”dampness,” “accident,” or “injury,” “infection,” and “hard work”
(see fig. 3). The influence of “climate” and “infection” on arthritis was
emphasized by persons under 45 years of age, while “overweight” was stressed
by those 45 years and older. Those who listed “hard work were predominantly those with less than eight years of schooling, whereas those who
checked “poor diet” or “runs in family” were among those who had completed
high school.
Symptoms
The symptoms most listed by arthritis patients were compared with the
clinical manifestations noted by their physicians (see fig. 4 ) . “Pain,” “stiffness,” “can’t move joints properly,” “swelling,” and “tired exceeded all
PATIENTS' ATTITUDES ON ARTHRITIS
429
EDWARDS, CALABRO AND WIED
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Rash
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An k y Iosis
Nodules
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MD
Pt
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10
40
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50
Number of Respondents
30
I
60
60
66
I
70
Fig. 4.-Complaints and clinical manifestations of disease listed by 100 arthritis
respondents and 12 physicians.
Joint Effusion
Visable Defect
Joint Deformity
Depression
Joint Instability
Fatigue
Swel Iing
Limited Joint Motion
Stiffness
Pain
0
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20
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1
81
9
80
1
90
432
EDWARDS, CALABRO AND WIED
others. With the exception of “joint deformity” and “effusion,” the physicians
checked fewer of their patients clinical manifestations than did the patients
themselves. This was particularly notable in subjective items such as “fatigue”
and “discouragement,” or in items which had different meanings to patients
and physicians, such as “joints give way” versus “instability of joints,” and
“can’t move joints properly” versus “limited joint motion.” Acknowledgement
of the appearance of deformity of joints was made by 30 patients. Thirty-two
physicians also made this observation, and an additional 14 noted that their
patients had “a visable degree of defect.” Of the 32 patients who felt their
disease had made them unattractive, only 19 were among those who stated
they had “deformed joints”; the remainder qualified their unattractiveness as
“an unhappy expression all the time,” “don’t walk naturally,” “look drawn
and stif€,”“take so long to get on the bus,” etc.
Recommendation of Others
A question was asked concerning the recommendations of friends, relatives and neighbors as to the treatment of arthritis. This elicited 180 responses from 62 persons, the remainder denying having received such advice
(see fig. 5 ) . The largest category checked concerned items of food or
diet, although only eight persons had indicated they thought diet was a
factor in causing or aggreva ting arthritis, and only three mentioned they were
on a special diet. Interesting variations were noted among the arthritics as
to the types of items checked, Adult rheumatoids stressed citrus fruits,
massage, vinegar and honey, other diet measures, uses of water, and exercises, whereas degenerative arthritics stressed diet, uses of water, exercises,
citrus fruits, and various medications. The parents of juveniles stressed
climate, medications, vinegar and honey, and diet.
Information and Attitudes
Sixty-four patients wanted to know more about their arthritis and 86 read
up on it, while 35 had written away for information. Twenty-four of 79 adult
arthritics stated they did not wish to be told more about their disease; most
of these were under 45 years of age and had better than eight years of
schooling. Of those who read up on or had written away for information
on arthritis, the larger proportion had more than eight years of schooling,
whereas of those who did not, the majority had less than this amount.
General questions regarding the effect of aspirin on the heart, the need for
more research, and the improvement of present-day therapy for arthritis,
drew a large number of “don’t-know” responses. Twenty-eight persons stated
that at some time they had felt that a physician who was treating them wasn’t
interested in their arthritis, and 17 felt the treatment at times was worse than
the disease. Twenty-one of the 28 patients who had had a disinterested physician were adults and of these ten were under 45 years of age, and 17 had
better than eight years of schooling.
Thirty-two patients felt their arthritis had made them unattractive, 28
felt that others had changed their attitudes toward them, and 54 stated that
433
PATIENTS’ ATTITUDES ON ARTHRITIS
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434
EDWARDS, CALABRO AND WIED
their home or family life had been affected. Fifty-nine had contributed to
voluntary arthritis organizations.
DISCUSSION
While 100 arthritis patients constitute a small sample for general study,
the distribution by age, sex, and type of arthritis in this group conforms to
. ~ higher proportion of divorced or sepathose of larger clinical ~ e r i e s The
rated persons among the rheumatoid arthritics is in agreement with the reports of other^,^ although accompanying differences in age, education and
occupation might aftect this relationship. Little significance can be attached
to variations in race or nationality in such a small sample.
The partially subjective nature of this questionnaire limits appraisal of its
results. Definite impressions have been obtained, however, regarding the
personal factors involved in the attitudes and information among persons with
arthritis.
The causes of arthritis selected by the majority of patients (“nerves,”
“dampness,” “injury,” “infection,” “hard work,” and “climate”), were related
by them to events with unpleasant connotations ( a financial crisis, loss of
a family member, illness, an operation, working in a damp environment,
moving, etc. ) which preceded onset or exaccerbations of their disease.
A disparity was apparent between the symptoms listed by patients and
by their physicians, and between the therapy prescribed and that being followed. The difierences in symptoms were both quantitative and qualitative,
and suggest that the image of the patient held by his physician, and by the
patient himself, do not correspond. As regards treatment, medication prescribed by the physician was accepted and recalled, while other measures,
notably physical therapy, were generally neglected. Yet it was amazing to
learn that the patients were receiving chiropractic treatment, drinking herbtea, gin-and-garlic, and bathing or rubbing themselves with a variety of solutions and salves (including iodine, kerosene, and “Chinese Tiger-balm”)
unbeknownst to their physicians. A typical response when asked if they had
told their doctor of these measures was that “he never asked me.”
Interest in learning more about arthritis was expressed by the majority of
patients, and indicated by the number who read about and had written away
for information, and who acknowledged receiving advice from friends, relatives and neighbors. These questions were more personally directed than
those regarding research, or the effects of therapy, as reflected in the large
number of patients answering “don’t know” to the latter.
The variables of age and education were associated with certain attitudes
and practices among the patients surveyed, including beliefs regarding curability or causation of their disease, interest in knowing more about it, a critical attitude toward certain physicians who had treated them, and adherence
to recommendations regarding exercises and massage. However, the clinical
categories of patients studied were rather sharply divided concerning these
variables, the 46 persons with adult rheumatoid arthritis having an average
age of 46.9 years, while the average age of the patients with degenerative
435
PATIENTS’ ATTITUDES ON ARTHRITIS
arthritis was 63.8 years. Twenty-one of the former were under 45 years of age,
whereas only six of the latter were under 60 years. Considering the variations
in the clinical courses of these two disorders, it would seem that comparisons
between larger numbers of persons of similar ages would be required before
differences such as those observed in this study could be attributed to factors of age or education.
The results of this questionnaire seem to indicate that, among arthritic
patients, there is both a need and a wish for greater knowledge and understanding of their disease, especialIy as it relates to the individual. The search
for information and efTective treatment is pursued by the patient as well as
by his physician, and includes following recommendations by non-professional
persons. Even in a special clinic staffed by physicians with a particular interest in arthritis, there are gaps between the concepts of disease and its
management held by the patient and his doctor, gaps of which neither is
fully aware.
Whether group education sessions for arthritic patients would improve
their knowledge and attitudes, and strengthen their relations with their
physicians has not been ascertained by this study. It seems reasonable to
conclude however, that greater attention by the physician to his patients’
complaints, questions, doubts and fears, might be rewarded by improved
application of therapy, and that areas of ignorance or undesirable behavior
must be searched for and uncovered rather than assumed to be absent.
SUMMARY
One hundred patients attending an arthritis clinic were queried about
their knowledge and attitudes concerning arthritis. Certain responses were
analyzed by age, education and type of arthritis; the results, while interesting,
are inconclusive because of the small sample. Beliefs regarding the cause of
arthritis seem related to incidents temporarily preceding the onset of illness.
There are discrepancies between the physician’s and patient’s concepts of
the latter’s clinical status, and between therapy prescribed and followed.
Evidence of self-interest and personal concern on the part of the patient
suggests &at improved knowledge and greater adherence to a therapeutic
program may be a function of improved physician-patient relationships.
REFERENCES
1. Mueller, A. D., Leflcovits, A. M., Bryant,
J. E., and Marshall, M. D.: Some
psychosocial factors in patients with
rheumatoid arthritis. Arth. & Rheum.
4:275-283, June 1961.
2. King, S. H. and Cobb, S.: Psychosocial
factors in the epidemioIogy of rheumatoid arthritis. J. Chron. Dis. 7:466475, June 1958.
3. LaPointe, J. L., Wittkower, E. D., and
Longheed, M. N.: Psychiatric evalua-
tion of the effect of cancer education
on the lay public. Cancer 12:12001206, Nov.-Dec. 1959.
4. Primer on the Rheumatic Diseases. Prepared by a Committee of the American Rheumatism Association. J.A.M.A.
171:1205-1220, Oct. 31, 1959.
5. Cobb, S., Miller, M. and Wieland, M.:
On the relationship between divorce
and rheumatoid arthritis. Arth. &
Rheum. 2:414-418, Oct. 1959.
436
EDWARDS, CALABRO AND WIED
Margaret H . Edwards, M.D., Clinical Associate in Medicine
Division of Rheumatology, Seton Hall College of Medicine.
Currently, Diabetes and Arthritis Program, Division of Chronic
Disease, Public Health Service, Washington, D. C .
John J. Calabro, M.D., Director, Division of Rheumatology,
Seton Hall College of Medicine.
Marion E. Wied, M.S.W., Division of Rheumatology, Seton
Hall College of Medicine, Jersey City, New Jersey.
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