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Rheumatoid Arthritis

Assessment of discordance of treatment satisfaction between patients with rheumatoid arthritis in low disease activity or in remission and their treating physicians: A cross-sectional survey

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Pages 326-333 | Received 04 Dec 2019, Accepted 20 May 2020, Published online: 18 Jun 2020

Abstract

Objectives

To assess discordance in overall treatment satisfaction between patients with rheumatoid arthritis (RA) and their physicians.

Methods

This was a multicenter, cross-sectional, observational study of patients with RA (in low disease activity or remission) and their board-certified treating physicians in Japan; 202 patient–physician pairs were analyzed. Treatment satisfaction and perceptions were assessed using a structured questionnaire.

Results

Using a two-level (‘satisfied’ or ‘unsatisfied’) assessment of satisfaction, 195 patients (96.5%) and 190 physicians (94.1%) answered ‘satisfied’ with a high level of concordance (184 pairs, 91.1%). Using a four-level assessment, the ratio of ‘satisfied’ to ‘somewhat satisfied’ was higher in patients (66.3%/30.2%) than physicians (43.6%/50.5%). Satisfaction with treatment outcomes (e.g. joint conditions, subjective symptoms) was generally high in patients and physicians; relatively less satisfaction was reported for medication cost, especially among patients. Shared treatment decision-making was reported in ≥96% of patient–physician pairs. The most common ‘most important’ treatment target differed between patients (‘Have a social life without worrying about RA’) and physicians (‘Prevent joint damage, deformity, and joint swelling’).

Conclusions

Treatment satisfaction and concordance were high between patients in low activity/remission and physicians. Some differences between patients and physicians were reported in satisfaction for specific treatment outcomes and important treatment targets.

Introduction

The well-established strategy, treat-to-target (T2T) [Citation1], has brought about remarkable improvement in attaining low disease activity (LDA) or remission in patients with rheumatoid arthritis (RA). Tight monitoring of disease activity with shared decision-making to achieve distinct targets is a fundamental concept of T2T strategy, and in its implementation, patients’ perceptions and understanding of their disease and treatment options, and agreement between patients and physicians, are essential.

Despite the importance of patient-reported outcomes (PROs), these outcomes may not be sufficiently utilized or prioritized in routine clinical practice [Citation2]. Several studies in patients with immune-mediated diseases, including RA, show discordance between patients and physicians in their opinions about treatment inefficacy or treatment escalation [Citation3], treatment targets and expectations [Citation4], treatment satisfaction [Citation5], and global assessment of disease [Citation6]. For RA, the rate of discordance in global assessment of disease between patients and physicians varies with disease severity, treatments received, and how discordance is defined; however, disease status is generally rated worse by patients than by their physicians [Citation7–12]. In addition, patient–physician discordance in assessment of disease status and treatment targets can lead to depressive symptoms and decreased work productivity in patients with RA [Citation7,Citation12], further leading to more difficult situations for making treatment decisions.

A recent systematic literature review [Citation13] and analysis of phase 3 studies [Citation14] indicated that a proportion of patients who achieve LDA or remission still have residual symptoms such as pain and fatigue, suggesting a potential gap in satisfaction between patients and their treating physicians. Several studies have compared patient and/or physician satisfaction with RA treatment [Citation3,Citation15,Citation16]; however, they included patients with varying disease severity and did not assess concordance or discordance in treatment satisfaction between patients and physicians.

To evaluate discordance between patients in a state of LDA or remission and physicians in their level of treatment satisfaction, we conducted a cross-sectional observational study using questionnaires administered to paired patients and physicians.

Materials and methods

Study design, patients, and physicians

This was a multicenter, cross-sectional, observational study of RA patients and their treating physicians. The study was conducted at 15 clinical sites in Japan from October 2017 to April 2018. Patients aged ≥20 years with a diagnosis of RA and in a state of LDA or remission as determined by their treating physicians, and not currently in a clinical trial, were eligible to participate in the study. Physicians had to be rheumatologists or orthopedic surgeons with at least 5 years of RA treatment experience including the use of biologics. A maximum physician–patient ratio of 1:7 was used to avoid any dominant trend owing to specific physicians treating high patient numbers.

The primary objective was to assess discordance in overall treatment satisfaction with the current RA treatment (‘satisfied’ or ‘unsatisfied’) between RA patients and their treating physicians. The secondary objective was to describe and quantify attributes for overall satisfaction with current RA treatment in patients and physicians.

This study was reviewed and approved by a central ethical review board and/or the ethical review board of each clinical site, and was conducted in accordance with the Declaration of Helsinki (2013), Ethical Guidelines Concerning Medical Studies in Human Subjects in Japan [Citation17], and other applicable laws and regulations in Japan. All eligible physicians and patients gave written informed consent before participation in the study.

The clinical sites for this study were selected based on convenience sampling. Treating physicians at each selected site were enrolled in the study. Participating patients were assessed for eligibility by their treating physicians and were enrolled in a consecutive manner to minimize selection bias.

Survey questionnaire

A structured questionnaire in Japanese was used to collect data from patients and their treating physicians. Patients were asked to complete the questionnaire on-site on the day of enrollment. Treating physicians were asked to complete the questionnaire for each patient within 2 weeks of the patient’s enrollment. Patients and treating physicians were blinded to their respective questionnaires. To prevent patients and their treating physicians from influencing each other’s answers, patients and physicians could only see their respective patient and physician items on the questionnaire and investigators at each site were blinded to the completed questionnaires. Completed questionnaires were sealed into envelopes and collected by site personnel anonymously and separately from patients and physicians before being paired for data analysis.

The physician questionnaire included physician demographic characteristics and perception of RA treatment, as well as the patient’s clinical information. The patient questionnaire included questions relating to patient demographic characteristics, clinical measures, PROs, and perception of RA treatment. For the patient questionnaire demographic characteristics, duration of RA disease and age at diagnosis, PROs, and perception of RA treatment were patient self-reported, and comorbidities, use of medication, and measures of RA disease activity were physician-reported.

Measures

PRO instruments

The PRO instruments completed by patients included the following: Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F) scale [Citation18], a 13-item, symptom-specific questionnaire that assesses fatigue and its impact in the past 7 days using a 0 (‘not at all’) to 4 (‘very much’) numeric rating scale (scores range from 0 to 52, with higher scores indicating less fatigue); the Multi-Dimensional Health Assessment Questionnaire (MDHAQ) [Citation19–21], an RA-specific questionnaire that includes physical function (10 activities of daily living scored from 0 to 3), psychological distress (sleep, anxiety, and depression scored from 0 to 3.3), pain, patient global assessment, and fatigue (each scored from 0 to 10), and change in status and morning stiffness in minutes; and the EuroQol-5 Dimensions-5 Levels (EQ-5D-5L) [Citation22] questionnaire, which assesses mobility, self-care, usual activities, pain/discomfort, and anxiety/depression using a five-item Likert scale from no problems to severe problems, and an assessment of a patient’s overall health state using a visual analog scale (VAS) of 0–100 where 100 represents the best health imagined.

Disease activity measures

The physician-reported measures of RA disease activity were measures assessed in routine clinical practice and included the 28-joint count of swollen joints (SJC) and tender joints (TJC), erythrocyte sedimentation rate (ESR) (mm/hour), C-reactive protein (CRP; mg/L), Patient’s Global Assessment of Disease Activity VAS (0–100 mm), Physician’s Global Assessment of Disease Activity VAS (0–100 mm), Disease Activity Score 28-joint count (DAS28)-CRP, DAS28-ESR, Clinical Disease Activity Index (CDAI), and Simplified Disease Activity Index (SDAI) [Citation23].

Perceptions of treatment and satisfaction

To assess perceptions of treatment, patients and physicians were first asked to evaluate their satisfaction with the current RA treatment on a 5-point Likert scale (‘satisfied’, ‘somewhat satisfied’, ‘neutral’, ‘somewhat unsatisfied’, or ‘unsatisfied’) for the following nine items: joint damage/deformity, joint swelling, laboratory values for RA inflammation, pain, fatigue, morning joint stiffness, daily activities/social life, cost of medication, and medication dosing schedule/convenience of administration. Both patients and physicians were then asked to choose their most appropriate level of satisfaction with current overall RA treatment from ‘satisfied’, ‘somewhat satisfied’, ‘somewhat unsatisfied’, or ‘unsatisfied’. Further, patients and physicians were asked the following: to identify the most important factor for addressing overall treatment satisfaction (from the nine items mentioned above); whether the patient had experienced any adverse drug reactions from their current RA medication and whether this had affected their treatment satisfaction; whether they made a shared decision about treatment (‘yes’ or ‘no’); to identify their most important target for the current treatment (‘Prevent joint damage, deformity, and joint swelling’, ‘Control RA symptoms’, ‘Maintain or improve daily activity including housekeeping and paid work’, ‘Have a social life without worrying about RA’, ‘Achieve overall improvement from previous treatment’, ‘Other’, or ‘No specific targets’); and whether they felt their treatment targets were consistent with those of their patient/physician (‘yes’ or ‘no’).

Statistical analysis

Descriptive statistics were used to summarize all variables from the questionnaires. Continuous variables were summarized by number of observations, mean, and standard deviation (SD) or first and third quartiles. Categorical variables were summarized by number of observations, frequency counts, and percentages. For the primary objective, using the responses for overall satisfaction with the current RA treatment for patients and physicians, two levels of satisfaction concordance were constructed and compared: satisfaction-concordance (physician and patient both satisfied or physician and patient both unsatisfied) or satisfaction-discordance (physician satisfied and patient unsatisfied or physician unsatisfied and patient satisfied). Statistical analyses were conducted using SAS® version 9.3 (SAS Institute Inc., Cary, NC, USA).

Results

Study population

A total of 204 patients and 38 treating physicians (from 15 clinical sites) met the eligibility criteria and were enrolled in the study. All eligible patients and treating physicians completed their respective questionnaires and were included in the full analysis set (FAS). Of those in the FAS, one patient and one physician in different patient–physician pairs did not respond to the question on overall satisfaction with the current RA treatment. Therefore, data for 202 patient–physician pairs were used for the comparison of treatment satisfaction levels between patients and physicians.

Demographic and disease characteristics

On average, patients were 64.7 years of age, and approximately two-thirds were female and had been diagnosed with RA for 12.3 years (). Most (62%) patients were in remission and 61% had been treated with disease-modifying antirheumatic drugs (DMARDs) alone. The most common DMARD treatments were methotrexate (MTX; 68% of patients), other conventional synthetic DMARDs (csDMARDs; 48%), and biologic DMARDs (bDMARDs; 29%). Mean FACIT-F and MDHAQ pain scores were 42.3 and 1.4, respectively ().

Table 1. Patient demographic and disease characteristics and PROs (N = 202).

Almost all physicians were rheumatologists and were working at private or public hospitals (). Physicians had between 5 and more than 20 years of experience treating patients with RA, and almost all had at least 5 years of experience treating RA patients with bDMARDs and saw at least 20 patients per month.

Table 2. Physician demographic characteristics (N = 38).

Perception of treatment satisfaction

Using the two-level (‘satisfied’ or ‘unsatisfied’) assessment of overall treatment satisfaction, of the 202 patient–physician pairs, 195 patients (96.5%) and 190 physicians (94.1%) answered ‘satisfied’ with a high level of concordance (184 patient–physician pairs, 91.1%). From the four-level assessment of overall treatment satisfaction (), the proportions of respondents who answered ‘satisfied’ and ‘somewhat satisfied’ were higher for patients (66.3%/30.2%) than for physicians (43.6%/50.5%). In addition, a higher level of concordance with treatment satisfaction was observed for patients who were in remission than had LDA (). Among the nine detailed questions about treatment and treatment outcomes, more than 50% of patients reported they were ‘satisfied’ in response to most questions and approximately 20 to 30% of patients reported they were ‘somewhat satisfied’ (). One exception was medication costs, where the proportions of patients who reported they were ‘satisfied’, ‘somewhat satisfied’, or ‘neutral’ were relatively evenly distributed. Physicians’ answers to these questions showed a similar trend to the patient responses, except that the proportions of physicians who reported they were ‘somewhat satisfied’ were higher than those who reported they were ‘satisfied’ for treatment outcomes of fatigue and daily activities/social life ().

Figure 1. Patient and physician satisfaction with current RA treatment. The percentages of patients and physicians who rated their satisfaction with current RA treatment as satisfied, somewhat satisfied, neutral, somewhat unsatisfied, or unsatisfied are shown for nine items of treatment outcome, cost, and convenience. RA: rheumatoid arthritis.

Figure 1. Patient and physician satisfaction with current RA treatment. The percentages of patients and physicians who rated their satisfaction with current RA treatment as satisfied, somewhat satisfied, neutral, somewhat unsatisfied, or unsatisfied are shown for nine items of treatment outcome, cost, and convenience. RA: rheumatoid arthritis.

Table 3. Comparisons between physician and patient satisfaction levels (four levels).

The most important factor affecting overall treatment satisfaction was ‘Treatment outcomes of joint and bone’ for patients (39.1%) and physicians (44.2%), followed by ‘Treatment outcomes of symptoms including pain, fatigue, and morning joint stiffness’ for patients (33.0%) and ‘Treatment outcomes of daily activities/social life’ for physicians (29.9%). Most patients (69.8%) and physicians (79.7%) agreed with the statement that the patient ‘experienced at least one adverse drug reaction and it affected satisfaction with the current treatment’, whereas 23.3% of patients reported experiencing an adverse drug reaction that did not affect their satisfaction with the current treatment. The remaining patients did not experience an adverse drug reaction (6.4%) or data were missing (0.5%).

A shared decision on RA treatment was reported by almost all patient–physician pairs (96.0% of patients, 99.0% of physicians) (), and almost all patients (93.1%) and physicians (92.1%) felt that their treatment targets were consistent with those of their respective physicians or patients (). However, patients and physicians differed in their response to the question about the most important target of current treatment (). The most frequently reported treatment target for patients was ‘Have a social life without worrying about my RA’, whereas for treating physicians it was ‘Prevent joint damage, deformity, and joint swelling’ ().

Figure 2. Patient and physician perception of shared decision-making and treatment targets. Patient and physician responses are shown for (a) shared treatment decision-making, (b) patient–physician consistency of treatment targets, and (c) most important treatment target. RA: rheumatoid arthritis.

Figure 2. Patient and physician perception of shared decision-making and treatment targets. Patient and physician responses are shown for (a) shared treatment decision-making, (b) patient–physician consistency of treatment targets, and (c) most important treatment target. RA: rheumatoid arthritis.

Discussion

Our study indicated that almost all patients with RA who had LDA or remission and their treating physicians, who were mostly rheumatologists (92.1%), were satisfied with current treatment and that these perceptions were highly concordant. Although the ratio of ‘satisfied’ to ‘unsatisfied’ responses was almost the same for patients and physicians, the relatively higher proportions of physicians who reported that they were ‘somewhat satisfied’ rather than ‘satisfied’ compared with patients suggest that physicians expect more from current treatments than patients do. Consistent with findings in other populations [Citation13,Citation14], although patients in this study had met conventional clinical targets of LDA or remission, patient-reported FACIT-F and MDHAQ pain scores indicated that some patients still suffered from residual symptoms and disease burden. Residual pain in patients with RA may possibly arise from central sensitization, which can contribute to persistent pain in patients with RA even after inflammation and other aspects of RA disease are controlled [Citation24]. However, given the duration of RA, patients may learn to cope with or tolerate pain better in their lives. Overall, our findings suggest that T2T-based treatment and shared decision-making, as recommended by the European League Against Rheumatism (EULAR) [Citation25], have been adopted into clinical practice at least by board-certified rheumatologists who treat patients with RA in Japan and appear to have led to improved patient trust, integrated communication, and high levels of satisfaction.

To our knowledge, this is the first study to assess treatment satisfaction and alignment between paired patients with RA and LDA or remission and their treating physicians. Findings from previous studies of patients with RA that included patients with inadequate disease control or moderate to high disease activity levels have shown high levels of satisfaction with current RA treatment or communication with physicians [Citation3,Citation15], and high levels of satisfaction despite patients reporting moderate to severe impact of RA on their quality of life (QOL) [Citation26]. Together with the current study, these findings suggest that patients with RA, irrespective of the severity and impact of their disease, come to accept living with varying degrees of symptoms and impaired QOL and are most likely to respond positively to questionnaires on treatment satisfaction. In addition, findings from the current study are consistent with surveys that have evaluated alignment between paired patients and physicians on their satisfaction with treatment for psoriasis [Citation5] and psoriatic arthritis [Citation27]. These studies showed high levels of satisfaction and concordance (either both satisfied or both dissatisfied) between patients and physicians and, when discordance was present, it mainly comprised a satisfied patient and dissatisfied physician. This general trend toward high levels of satisfaction and alignment, and relatively higher satisfaction levels in patients than physicians for immune-mediated diseases, including RA, is likely to be because patients have lower treatment expectations and different targets compared with physicians. This difference in treatment targets was evident in the current study, with patients more focused on social aspects of living with RA and physicians more focused on clinical outcomes, which suggests that physicians are relatively less satisfied with their patient’s achievement of clinical targets and may be more aware of the long-term implications for managing patients with diseases that are incurable and have a high health burden. Although the factors underlying this gap have yet to be explored fully, it does suggest that patients should be encouraged to explain their disease burden and true treatment targets to physicians, and physicians need to be more careful to integrate them into their target-setting and clinical practice.

In this survey, we found differences between what patients and physicians considered to be the most important target of current treatment. Despite these differences, we found that almost all patients and physicians reported making shared decisions with regard to RA treatment. This is in contrast to an earlier cross-sectional survey in Japan in 2010 where more than one-third (38.4%) of patients indicated that they preferred a passive role, with the treatment choice made by their physician [Citation28]. However, a nationwide survey in 2016 of 1000 Japanese patients with RA revealed that 93% of patients regarded shared decision-making as very or quite important, suggesting a shift in patient preference from a passive to a collaborative role [Citation29]. An internet-based survey of Japanese physicians’ preferences in treatment decisions for RA conducted in 2012 indicated that only 27% of physicians shared decision-making with their patients [Citation30], and in a study of Japanese rheumatologists conducted in 2011, 43.5% of participants indicated they did not discuss their treatment strategy with all of their patients [Citation2]. Available evidence like this suggests that the physicians enrolled in our study, who were experienced rheumatologists, had an increased awareness of and motivation to implement the T2T strategy in the care of their patients. However, owing to the nature of the questionnaire, our study did not investigate whether the role of patients was collaborative or passive. In addition, because we used a binary response (yes/no), it was not possible to assess the degree of agreement in ‘shared decision-making’ between patients and their physicians. These aspects need to be addressed in further studies.

There were some limitations to this study. First, the cross-sectional survey was completed only once by each patient and physician, and therefore it was not designed to detect changes in treatment satisfaction during the disease course. Second, although patients completed the questionnaire separately from their treating physician, patients met their physicians to undergo the eligibility assessment on the day prior to enrollment. The requirement for informed consent to participate in the study, the timing of the eligibility assessment, and the clinical site environment may have positively biased patients’ perception of their treatment satisfaction and concordance. Third, patients in Japan have access to a choice of health care providers, and patients who are not satisfied with their ongoing treatment have the opportunity to change their physician, which may also have contributed to positive bias with regard to patient satisfaction in this study. Fourth, the study was not designed to determine which factors contributed to satisfaction with treatment, which can be influenced by many factors in addition to current medication, such as physical therapy, the patient–physician relationship, and time in remission or with LDA. Fifth, patients and physicians may have different concepts of what constitutes ‘shared decision-making’. Finally, findings from this study are limited to RA patients whose clinical symptoms were well controlled and who agreed to participate in the study. In addition, because of the low level of discordance in this study, we were not able to explore the relationship between satisfaction-concordance/discordance and patient clinical characteristics and clinical outcomes. Future studies that contribute to a better understanding of what constitutes patient satisfaction with treatment may lead to new treatment strategies that incorporate an index of patient satisfaction into clinical practice and ultimately contribute to further improvement in patient QOL.

Conclusion

In summary, our cross-sectional survey revealed that both RA patients with LDA or remission and their treating physicians, who were experienced rheumatologists, were satisfied with current treatment and their perceptions were highly concordant, indicating a high degree of shared decision-making. Although almost all patients and physicians made shared treatment decisions, some differences were reported in their most important treatment targets, suggesting a potential need for shared treatment target-setting between patients and physicians.

Author contributions

All authors participated in the interpretation of the study results, and in the drafting, critical revision, and approval of the final version of the manuscript. Zhihong Cai and Masayo Sato were involved in the development of the study design, and Zhihong Cai was involved in the statistical analysis.

Role of the sponsor

Eli Lilly Japan K.K. was involved in the study design, data collection, data analysis, and preparation of the manuscript.

Acknowledgments

The authors thank all patients and physicians from the clinics and hospitals across Japan who generously gave their time to participate in this study.

Conflicts of interest

Y. Kaneko has received consulting fees, speaking fees, and/or honoraria from AbbVie GK, Astellas Pharma Inc., AYUMI Pharmaceutical Corporation, BMS K.K., Chugai Pharmaceutical Co., Ltd., EA Pharma Co., Ltd., Eisai Co., Ltd., Eli Lilly Japan K.K., Janssen Pharmaceutical K.K., Mitsubishi Tanabe Pharma Corporation, Pfizer Japan Inc., Taisho Toyama Pharmaceutical Co., Ltd., Takeda Pharmaceutical Company Limited, and UCB Japan Co., Ltd. Minako Sato, Z. Cai, and Masayo Sato are employees and stock owners of Eli Lilly and Company.

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