The Importance of Aspects of Treatment for Fibromyalgia (Fibrositis)

Transcription

1 The Importance of Aspects of Treatment for Fibromyalgia (Fibrositis) Differences Between Patient and Physician Views Marilyn K. Potts and Stuart L. Silverman Thirty-five individuals with fibromyalgia [fibrositis), 22 of their physicians, and 49 rheumatologists on an Arthritis Foundation referral list rated the importance of 24 aspects of fibromyalgia treatment. These encompassed symptom control, psychosocial factors, information, and physical therapy. Respondents with fibromyalgia rated their satisfaction with the way each aspect of treatment had been managed by their physician, and each completed a health status questionnaire. Fibromyalgia patients viewed 8 of the 24 aspects of treatment as significantly more important than did their own physician, and 18 of the 24 as significantly more important than did area rheumatologists. Satisfaction with the way treatment had been managed was generally low. Some evidence suggested that patients health status was affected positively by the extent to which their physician viewed certain aspects of treatment as important. The results are expected to be useful in the design of fibromyalgia education programs for both Jay and health professional audiences. Considerable evidence supports the premise that patient-physician agreement about patients concerns Marilyn K. Potts, MSW, PhD, is an Associate Professor, Department of Social Work, California State University, Long Beach, California. Stuart L. Silverman, MD, is an Associate Professor of Medicine, Division of Rheumatology, School of Medicine, University of California at Los Angeles, California. Address correspondence and reprint requests to Marilyn K. Potts, MSW, PhD, Ikpartment of Social Work, California State University, Long Beach, 1250 Bellflower Boulevard, Long Beach, CA Submitted for publication October 5, 1989; accepted December 22, by the Arthritis Health Professions Association is associated with good health outcomes [l-31, enhanced adherence to treatment recommendations [4-61, and increased patient satisfaction [7-lo]. Thus, efforts to understand and, ultimately, to improve patient-physician concordance with respect to treatment may have several positive effects. Although earlier studies [ll-141 have shown considerable disagreement regarding treatment-related issues between health care providers and patients with other rheumatic diseases, this topic has not been addressed previously in fibromyalgia (fibrositis). This is unfortunate, insofar as efforts to establish an adequate patient-physician relationship are perhaps seldom more important than in the case of this condition. First, fibromyalgia is difficult to diagnose [ Several years may elapse between the onset of symptoms and the confirmation of the diagnosis [18, 191. In the process of obtaining a correct diagnosis, patients frequently must consult several physicians, some of whom may have dismissed their concerns; supplied an incorrect diagnosis; or labeled them as hysterical, hypochondriacal, or malingering. This situation is an excellent breeding ground for mistrust of physicians. Extra attention to the patient-physician relationship may be required to overcome the prior experience of the patient. Second, fibromyalgia treatment typically includes self-administered medication, a graded exercise regimen, and the awareness and avoidance of stress, each of which requires considerable patient involvement [20-22]. Compliance with such complicated management programs tends to be marginal, especially if accompanied by poor communication between the patient and the physician. Third, even when treatment and compliance are /90/$

2 12 Potts and Silverman Vol. 3, No. 1, March 1990 optimal, good control of fibromyalgia symptoms is often an elusive goal. If the physician does not perceive the patient s concerns accurately, his or her attempts to provide necessary support and encouragement may be misguided. This may increase the likelihood of patient disillusionment, noncompliance, and dissatisfaction with medical services. With these issues in mind, we have conducted a study designed to address the following questions: 1. To what extent do patients with fibromyalgia agree with their own physician, and with a group of area rheumatologists, about the importance of several aspects of fibromyalgia treatment? 2. How satisfied are patients with the way their treatment has been managed by their physician? 3. Are physicians views regarding the importance of treatment associated with the satisfaction of their patients? 4. Are physicians views regarding the importance of treatment associated with their patients health status? METHODS Patients Self-administered questionnaires were mailed to all 37 members of two fibromyalgia support groups sponsored by the Arthritis Foundation, Southern California Chapter. After two telephone follow-ups to nonrespondents, a response rate of 95% was achieved. Physicians Two sources were used for physician recruitment. The first was the physician referral list of the Southern California Chapter. This list consists of boardcertified and board-eligible rheumatologists, and internists with a special interest in rheumatology. In addition, participating patients were asked to supply the name and address of the primary provider of their fibromyalgia treatment. Thus, it was possible to match most of the patients with a physician on the referral list. Six patients identified physicians who were not included on this list [three rheumatologists, one physiatrist, one family practice physician, and one neurologist). Seventy-five physicians were identified who were not treating a participating patient, 49 of whom returned a self-administered questionnaire after one telephone follow-up if needed [response rate = 65%). This group is hereafter referred to as the unmatched physician group. Twenty-seven physicians were identified by participating patients as their primary source of fibromyalgia treatment, 22 of whom returned a questionnaire [response rate = 81%). This group is hereafter referred to as the matched physician group. Questionnaire Patient questionnaires included sections regarding the perceived importance of various aspects of fibromyalgia treatment; satisfaction with the way fibromyalgia treatment had been managed; functional status; sleep quality; degree of pain, depression, anxiety, and fatigue; and disease history and demographic characteristics. Physician questionnaires contained only the section on the importance of treatment. Both patients and physicians were asked to rate on 6-point scales the importance of 24 aspects of fibromyalgia treatment, including symptom control, psychosocial factors, information about fibromyalgia, and physical therapy. Items were generated by the authors, or were based on our previous work with rheumatic disease patients [11,13]. Responsc categories ranged from 0 [not at all important] to 5 [very important]. Patients were asked also to respond to the 24 items in terms of how satisfied they were with the way each had been addressed by their physician (0 = not at all satisfied; 5 = very satisfied). Functional status was assessed using the Health Assessment Questionnaire [HAQ 123, 241. Pain, depression, and anxiety were measured using relevant subscales of the Arthritis Impact Measurement Scales [AIMS) [ Four questions concerning sleep quality were developed by one of the authors (SLS). Each required a yes or no response. After appropriate recoding for directional consistency, responses were summed to create a sleep disturbance index. Components of this index were the following: I. Do you have difficulty falling asleep at night? 2. Do you wake up several times during the night? 3. Do you wake up earlier than you wish? 4. Do you feel rested when you wake up in the morning? Fatigue was measured using a scale developed by one of the authors (M.K.P.). This additive scale had an alpha reliability of Its components were: 1. During the past month, how would you describe the fatigue you usually have? (0 = none; 4 = very severe)

3 Arthritis Care and Research Patient-Physician Views of Fibrornyalgia Care During the past month, how often have you experienced significant fatigue? (0 = not at all; 4 = every day) 3. During the past month, how long has it usually been from the time you got up in the morning to the onset of fatigue? (0 = do not have fatigue; 4 = over 4 hours) 4. During the past month, how often have you taken at least one rest break during the day because you were fatigued? (0 = not at all; 4 = every day) Statistical Analyses By summing responses across the 24 aspects of treatment examined, the following four indices were created: overall importance of aspects of fibromyalgia treatment (for patients, and for both matched and unmatched physician groups), and overall patient satisfaction with treatment. Scores on each health status measure were standardized to a range of 0-10 to facilitate between-scale comparisons. Paired t tests were used to compare patient responses to those of their own physician (the matched group); unpaired t tests were used when the comparison group was area rheumatologists (the unmatched group]. All correlational analyses employed Pearson s r; correlations involving health status scales used unstandardized sc0res.l TABLE 1 Demographic Characteristics of Patients (N = 35) Characteristic Gender Female Male Age, in years* < Marital status Married Not married Education* College or postgraduate Some college High school only Employment status Employed or student Homemaker or retired Disabled Duration of fibromyalgia symptoms, in years* < * Does not total 35 because of missing data Number (Percent) 34 (97.1) 1 (2.9) 8 (23.5) 12 (35.3) a ( (17.6) 21 (60.0) 14 (40.0) 10 (29.4) 17 (50.0) 7 (20.6) 10 (28.6) 12 (34.3) 13 (37.1) 10 (33.3) 11 (36.7) 9 (30.0) RESULTS Characteristics of Patients All but one of the 35 respondents with fibromyalgia were women (Table 1). Their ages ranged from 23 to 77 years (mean = 47.9 years; standard deviation = 13.1 years). Most were married (60%) and had attended or graduated from college (79.4%). Nearly one third were employed or students (28.6%), another third were homemakers or retired (34.3%), and the remainder considered themselves disabled for employment purposes (37.1%). The duration of fibromyalgia symptoms ranged from 1 to 40 years (mean = 8.1 years; standard deviation = 9.1 years). Parametric statistics were used because the data were not highly skewed. With respect to patient importance ratings, only 4 of the 24 items were skewed at or greater; for both physician groups, skewness was less than for all items. Furthermore, when nonparametric statistical results were examined (Wilcoxon vs paired t test, Mann-Whitney U vs unpaired t test, and Kendall s tau vs Pearson s r), the results were nearly identical to those shown here. Only 5 of 48 comparisons (three unpaired comparisons and one paired comparison became significant, while one paired comparison became nonsignificant]. None of the correlations changed. Respondents with fibromyalgia reported considerable fatigue and significantly disturbed sleep (Table 2). The mean score for each (out of a maximum of 10.00) was over High degrees of pain and anxiety were reported also. Depression and functional disability appeared less problematic, although the standard deviation for disability was high, indicating wide variation in this regard. TABLE 2 Health Status of Patients (N = 35) Scale/Index* Pain Depression Anxiety Fatigue Sleep disturbance Disability Mean (Standard Deviation)t 6.78 (1.68) 3.69 (1.80) 5.98 (1.81) 7.29 (1.89) 7.71 (3.05) 3.38 (2.02) * Pain, depression, and anxiety scales are from the Arthritis Impact Measurement Scales [AIMS]. Fatigue and sleep scales were developed by the authors. The disability index is from the Health Assessment Questionnaire (HAQI. t Results shown here were standardized to a 0-10 scale for ease of comparison across measures.

4 14 Potts and Silverman Vol. 3, No. 1, March 1990 TABLE 3 Mean Patient and Physician Responses for the Importance of Fibromyalgia Treatment, and Patient Responses for Satisfaction with Treatment* Importance Aspects of Treatment Patients' Area Patient Patients Own Physician Rheumatologists Satisfaction Control of symptoms Pain relief Reduced fatigue Improved sleep Reduced stiffness Psychosocial factors Discussion of ways to reduce stress Reduced depression Reduced anxiety lnstruction in relaxation Sexual counseling Inclusion of family in physician visits Opportunity to meet other patients Encouragement to practice self-care Information On prognosis On symptoms On cause of condition On diagnostic techniques On medication side effects Physical therapy lnstruction in use of heat lnstruction in massage lncreased mobility Increased ability to do activities lnformation on pacing activities Exercise instruction by physician Exercise instruction by physical therapist Grand means t t * 2.44* 3.28t 3.aat t t * t 3.94t 3.63$ * t * Possible range for each item is 0 (low) to 5 (high). Comparisons were made between patient and physician responses t p < t p < p < Views of Patients and Physicians Regarding the Importance of Aspects of Treatment As shown in Table 3, mean scores of respondents with fibromyalgia on the 24 treatment-related items ranged from 2.53 (for sexual counseling) to 4.86 (for pain relief). Eighteen items had mean scores of 4.00 or higher, indicating that these respondents attached considerable importance to most of the aspects of treatment assessed. The grand mean across all 24 items was For physicians treating the respondents with fibromyalgia (the matched group), improved sleep received the highest rating (4.60) and instruction in massage the lowest (2.44). Eleven of the 24 items had mean scores of 4.00 or higher. For eight items, responses by physicians in the matched group were significantly lower than those of their patients, while the reverse was true for no item. The grand mean for these physicians was 3.83, which was also significantly lower than that of their patients. For area rheumatologists (the unmatched group), pain relief was the most highly rated item (4.56), while sexual counseling received the lowest rating (2.35). Thus, with respect to the two items with the highest and the lowest mean ratings, area rheumatologists agreed with the respondents with fibromyalgia. In other respects, however, more disagreement was apparent between patients and these rheumatol-

5 Arthritis Care and Research Patient-Physician Views of Fibromyalgia Care 15 ogists than between patients and their own physician. Notably, mean scores by area rheumatologists reached 4.00 or higher for only four items, and the grand mean for this group was only For 18 of the 24 items, and for the grand mean, scores of area rheumatologists were significantly lower than those of patients. Patient Satisfaction For each of the 24 items, the mean satisfaction rating by patients was considerably lower than their corresponding importance rating (Table 3). Encouragement to practice self-care had the highest satisfaction rating (2.85), and instruction in massage the lowest (1.73). Notably, no item was given a moderate (i.e., 3.00) satisfaction rating, and the grand mean was only Correlations Between Physician Views of the Importance of Aspects of Treatment, and Patient Satisfaction and Health Status It might be expected that higher importance ratings by physicians in the matched group (i.e., greater agreement between physicians and their patients) would be associated with greater patient satisfaction with treatment. However, this was true for only one of the correlations examined (information on possible side effects of medication; r = 0.37, p = 0.04). Since at least one significant correlation at the 0.05 level would be expected by chance, given that 24 associations were analyzed, this finding should be interpreted with caution. Several a priori predictions were made regarding associations between the importance ratings of physicians treating respondents with fibromyalgia, and the health status of their patients. That is, higher ratings by these physicians were expected to be associated with lower scores on the most relevant patient health status indicator: pain relief with the pain scale, reduced depression with the depression scale, reduced anxiety with the anxiety scale, reduced fatigue with the fatigue scale, improved sleep with the sleep disturbance index, increased mobility with the disability index, and increased ability to perform daily activities with the disability index. Two of these associations neared significance. Physicians who viewed reduced depression or anxiety as important tended to have patients who were less depressed (r = -0.30, p = 0.08) or anxious (r = -0.29, p = 0.08), respectively. Moreover, high scores on the overall importance index for physicians in the matched group were associated with less sleep difficulty (r = -0.34, p = 0.05) and less disability (r = , p = 0.01) among their patients. No associations were noted between the overall importance index for these physicians and their patients pain, depression, anxiety, or fatigue. DISCUSSION The results of this study indicate that physicians view several aspects of fibromyalgia treatment as less important than do patients. Such differences occurred over twice as frequently among area rheumatologists as among a group of physicians known to be treating fibromyalgia support group members.* Although we have no information concerning the number of fibromyalgia patients seen by area rheumatologists, it is unlikely that they had no experience with such patients. All were in practice and all received referrals from the Arthritis Foundation, which does not identify physicians according to their special interests. That the views of these physicians differed so extensively from those of fibromyalgia patients suggests that education programs in rheumatology might fruitfully include content on patient-physician communication, the importance of understanding and responding to patients concerns, etc. Although differences of opinion between patients and physicians were less apparent among physicians treating study participants than among area rheumatologists, it is the former source of disagreement that may have direct clinical consequences. First, it was noted that patients whose physician viewed their psychologic concerns as important aspects of treatment were less depressed andlor anxious than those whose physician attached less importance to these factors. Second, patients whose physician endorsed the importance of a broad range of the treatment components examined (i.e., had high scores on the overall importance index) tended to experience less sleep disturbance and less disability than did those whose physician held a less comprehensive and/or weaker view of the importance of treatment. Although these findings are based on cross-sectional data and thus cannot prove causality, they suggest that improved clinical outcomes may result when physicians view the concerns of their fibromyalgia patients as important, especially when these concerns are related to psychologic factors. Analyses that combined both physician groups, resulting in a more representative sample of practicing rheumatologists than was the case for either the matched or unmatched groups described here, revealed significant differences between patients and physicians for 16 of the 24 treatment-related items. Thus, these findings were similar to the results shown in Table 3.

6 16 Potts and Silverman Vol. 3, No. 1, March 1990 Others have shown that concordance between patients and their physician (e.g., agreement regarding problems needing attention, physician recognition of patients concerns) can have a beneficial effect on treatment outcomes. Results of two studies by Starfield et al. [l, 21 indicate that improved clinical outcomes may result when physicians understand the concerns of their patients. In both studies, problems listed by both patients and their physician were more likely to be resolved than were those listed only by patients, or only by their physician. Similarly, Romm et al. [3] found that, among congestive heart disease patients who were minimally symptomatic, physician awareness of patients concerns was associated with positive outcomes. One of the most striking findings of this study was the low level of patient satisfaction observed. Perhaps this should not be surprising, given that fibromyalgia is a chronic, painful condition which often presents difficult management problems. The findings do not allow us to conclude, however, that patient satisfaction is affected by physician views of the importance of treatment. Indeed, other factors, such as the frustration of living with an incurable condition with a potentially major impact upon one s lifestyle, are perhaps more influential than this particular aspect of the patient-physician relationship. Nevertheless, it is premature to rule out completely the possibility that the physician s response to the patient s treatment-related concerns has an impact on patient satisfaction. First, the variance in patient satisfaction scores was quite low, thus limiting the likelihood that an association would be apparent. Second, we do not known how long patients had been under care of their current physician. Since most of the patients in the present study had had fibromyalgia symptoms for over 4 years, coupled with the difficulty in obtaining an accurate diagnosis for this condition [15-191, it is likely that several physicians had been consulted previously, Experience with these physicians, and with the health care system in general, may have affected the relationship between patient satisfaction and health status in unknown ways. Third, previous research has shown that various indicators of patient-physician concordance are predictive of patient satisfaction. The results of several studies suggest that patients tend to be satisfied with their physician s services if their expectations regarding their care are met, and/ or if their views are incorporated into the care plan. In one study, the degree to which the physician discussed the treatment plan was associated with patient satisfaction with care [7]. Results from another study [8] showed that patients overall satisfaction with care was associated with their physician s ability to communicate in understandable terms and to address their individual concerns. In a study [9] of patients with a variety of chronic illnesses, including arthritis, the most important predictors of patient satisfaction were the extent to which patients felt cared about and listened to by their physician. Results from a final study [lo] showed that fulfillment of patients expectations concerning their physician s role behavior (e.g., explaining health problems and test results, allowing patients to describe their problems) enhanced satisfaction with the physician s services. The present study did not address compliance with medical recommendations. However, in addition to clinical outcomes and patient satisfaction, this may be affected by patient-physician interaction patterns. For example, Davis [4] found that compliance was associated with patient-physician agreement regarding the appropriateness of treatment. Svarstad [5] has shown that patients whose physician gave instructions in an authoritative manner, and did not respond to their concerns about medication, tended to be noncompliant with treatment recommendations. In a retrospective study of patients with rheumatoid arthritis, Geertsen et al. [6] found that their compliance with medication regimens was associated with their perception of the quality of interaction with their physician. Thus, in view of these findings, it is plausible that good patient-physician interactions (however conceptualized] may enhance compliance, which in turn may improve health status outcomes. It should be noted that the generalizability of the present study s findings is limited by its sample, a select group of fibromyalgia support group participants whose education level was clearly higher than that of the general population. Such individuals may be more motivated to deal constructively with their condition, more knowledgeable about it, and more medically sophisticated than other fibromyalgia patients. On the other hand, the respondents may have joined the support group because of atypically high levels of physical and/or emotional distress. However, this select group appears similar to clinical samples of fibromyalgia patients with respect to physical and mental health status [ The results of this study should not be interpreted as indicating that the physicians were wrong and the patients right about the importance of treatment. Rather, differences between the views of these two parties suggest that further attention to patients concerns may be warranted. Such attention may take

7 Arthritis Care and Research Patient-Physician Views of Fibromyalgia Care 17 the form of adding new treatment components (e.g., referral to a physical therapist for instruction in appropriate exercises); of explaining to patients why certain treatments are not indicated in fibromyalgia (e.g., oral steroids or narcotic pain-relievers); of sanctioning treatments viewed by patients as helpful that, although harmless, have not been proven clinically beneficial (e.g., gentle massage); or of encouraging patients to discuss openly those issues which were shown here to be underrecognized by physicians (e.g., the importance of stiffness and anxiety). In conclusion, the results suggest that the health status of patients with fibromyalgia may be affected by their physician s view of the importance of various aspects of treatment. In particular, recognition of patients emotional concerns may have a beneficial impact on their psychologic health status. Certain aspects of physical health status may be affected positively when the physician holds a comprehensive, broadly based view of the importance of treatment. Although the mechanism(s) through which physicians views affect the health status of their patients were not examined in this study, one can speculate that a number of factors were operating. Physicians who view several aspects of fibromyalgia as important may be more likely than other physicians to initiate comprehensive treatment, to enable their patients to express their concerns freely, to make their patients feel cared about and listened to, and to provide extensive patient education. To the extend that these behaviors are practiced, one may expect a better patient-physician relationship and, perhaps ultimately, better outcomes in the treatment of fibromyalgia. - This work was initiated while Dr. Potts was Fibromyalgia Project Director, Arthritis Foundation, Southern California Chapter. Support was provided by the Norma Borie Fibrositis Research and Education Program Fund. The authors are indebted to the fibromyalgia support group members who participated in this project, and to the physician respondents. Carmen Barrera provided excelleni secretarial support REFERENCES Starfield B, Steinwachs D, Morris I, et al: Patient-doctor agreement about problems needing follow-up visits. JAMA 242: , 1979 Starfield B, Wray C, Hess K, et al: The influence of patient-practitioner agreement on outcome of care. Am J Public Health 71: , 1981 Komm FJ, Hulka BS, Mayo F: Correlates of outcome in patients with congestive heart failure. Med Care , Davis MS: Variation in patients compliance with doctors orders: Medical practice and doctor-patient interaction. Psychiatr Med 2:31-54, Svarstad BL: Physician-patient communications and patient conformity with medical advice. In Mechanic D (ed): The Growth of Bureaucratic Medicine. New York, John Wiley & Sons, 1976, pp Geertsen HR, Gray RM, Ward JR: Patient non-compliance within the context of seeking medical care for arthritis. J Chronic Dis 26: Wooley FR, Kane RL, Hughes CC, Wright DD: The effects of doctor-patient communication on satisfaction and outcome of care. SOC Sci Med 12: , DiMatteo RM, Hays R: The significance of patients perceptions of physician conduct: A study of patient satisfaction in a family practice center. J Community Health 6:18-34, DiMatteo RM, Prince LM, Taranta A: Patients perceptions of physicians behavior: Determinants of patient commitment to the therapeutic relationship. J Community Health 4: , Larsen DE: Physician role performance and patient satisfaction. SOC Sci Med 10:29-32, Potts M, Weinberger M, Brandt KD: Views of patients and providers regarding the importance of various aspects of an arthritis treatment program. J Rheumatol , Lorig K, Cox T, Cuevas Y, et al: Converging and diverging beliefs about arthritis: Caucasian patients, Spanish speaking patients and physicians. J Rheumato1 11:77-79, Potts MK, Mazzuca SA, Brandt KD: Views of patients and physicians regarding the importance of various aspects of arthritis treatment. Correlations with health status and patient satisfaction. Patient Education and Counseling 8: , Freidin RB, Goldman L, Cecil RR: Patient-physician concordance in problem identification in the primary care setting. Ann Intern Med 93: , Hench PK, Mitler MM: Fibromyalgia: Part 1. Review of a common rheumatic syndrome. Postgrad Med 80:47-56, Wolfe F: The clinical syndrome of fibrositis. Am J Med 81(3A):7-14, Yunus MB: Primary fibromyalgia syndrome: Current concepts. Compr Ther 10:21-28, Goldenberg DL: Fibromyalgia syndrome: An emerging but controversial condition. JAMA 257: , Hartz A, Kirchdoerfer E: Undetected fibrositis in primary care practice. J Fam Pract 25: , Bennett RM: Current issues concerning management of the fibrositis/fibromyalgia syndrome. Am J Med 81(3A):15-18, Gatter RA: Pharmacotherapeutics in fibrositis. Am J Med 81(3A):63-66, 1986

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