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- , I .' ". 1. U Gout 1 99 100 ..::.. 2. U 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 .. 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 U Q 5 [:. ... :. h P v; Y a4 E 0 2 !i bu 0 ...... ...... ...... ...... ...... ...... ...... i ...... ...... ...... ...... ".... ...... ...... ...... ...... ...... ...... ...... ...... ...... ...... I::::: 1:: $0 1::::: ~ Rash Fever An k y Iosis Nodules Pt MD Pt MD Pt MD I 10 40 I I I 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 I 20 I 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 -0 + c 0 + Y) C W B5 p: 4 0 L a, 4 E 2 h c0 .L r 0 n 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.