Arthritis Care & Research Vol. 63, No. 10, October 2011, pp 1407–1414 DOI 10.1002/acr.20551 © 2011, American College of Rheumatology
ORIGINAL ARTICLE
Rheumatoid Arthritis Patients and Rheumatologists Approach the Decision to Escalate Care Differently: Results of a Maximum Difference Scaling Experiment L. T. C.
VAN
HULST,1 W. KIEVIT,1 R.
VAN
BOMMEL,1 P. L. C. M.
VAN
RIEL,1
AND
L. FRAENKEL2
Objective. Antirheumatic treatment is frequently not appropriately modified, according to American College of Rheumatology guidelines, in patients with active rheumatoid arthritis (RA) as defined by a Disease Activity Score in 28 joints (DAS28) score greater than 3.2. The objective of this study was to determine which factors most strongly influence patients’ and rheumatologists’ decisions to escalate care. Methods. We administered a Maximum Difference Scaling survey to 106 rheumatologists and 213 patients with RA. The survey included 58 factors related to the decision to escalate care in RA. Participants answered 24 choice tasks. In each task, participants were asked to choose the most important factor from a set of 5. We used hierarchical Bayes modeling to generate the mean relative importance score (RIS) for each factor. Results. For rheumatologists, the 5 most influential factors were number of swollen joints (mean ⴞ SD RIS 5.2 ⴞ 0.4), DAS28 score (mean ⴞ SD RIS 5.2 ⴞ 0.5), physician global assessment of disease activity (mean ⴞ SD RIS 5.2 ⴞ 0.6), worsening erosions over the last year (mean ⴞ SD RIS 5.2 ⴞ 0.5), and RA disease activity now compared to 3 months ago (mean ⴞ SD RIS 5.1 ⴞ 0.6). For patients, the 5 most important factors were current level of physical functioning (mean ⴞ SD RIS 4.3 ⴞ 1.1), motivation to get better (mean ⴞ SD RIS 3.5 ⴞ 1.4), trust in their rheumatologist (mean ⴞ SD RIS 3.5 ⴞ 1.6), satisfaction with current disease-modifying antirheumatic drugs (mean ⴞ SD RIS 3.4 ⴞ 1.4), and current number of painful joints (mean ⴞ SD RIS 3.4 ⴞ 1.4). Conclusion. Factors influencing the decision to escalate care differ between rheumatologists and patients. Better communication between patients and their physicians may improve treatment planning in RA patients with active disease.
INTRODUCTION Several controlled studies have shown that adhering to standardized protocols aimed at minimizing disease activity improves outcomes in rheumatoid arthritis (RA) (1–7). Given these data, guidelines recommend that physicians
Supported by the Dutch Arthritis Association and by the Dutch Society for Rheumatology (rheumatology grant 2008). Dr. Fraenkel’s work was supported by the K23 Award (AR048826-05). 1 L. T. C. van Hulst, PhD, W. Kievit, PhD, R. van Bommel, BSc, P. L. C. M. van Riel, PhD, MD: Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands; 2 L. Fraenkel, MD, MPH: Yale University School of Medicine, New Haven, and VA Connecticut Healthcare System, West Haven. Address correspondence to L. T. C. van Hulst, PhD, Radboud University Nijmegen Medical Centre, Department of Rheumatology (470), PO Box 9101, 6500 HB Nijmegen, The Netherlands. E-mail:
[email protected]. Submitted for publication January 13, 2011; accepted in revised form June 28, 2011.
monitor disease activity with validated instruments, such as the Disease Activity Score in 28 joints (DAS28), and escalate care to achieve and maintain “tight control” (8 –12). While thresholds for escalating care differ, a DAS28 score of 3.2 or greater is considered to indicate active disease, and protocols using this cutoff result in improved clinical outcomes (7). Despite these data, several studies have shown that care is frequently not escalated in RA patients when clinically indicated by a DAS28 score of 3.2 or greater (5,13). A number of studies have described how patients and rheumatologists make treatment decisions in RA (5,13– 21). These studies have examined a limited set of factors from either physicians’ or patients’ viewpoints, and none directly compared the 2 perspectives. To gain a better understanding of the full spectrum of factors influencing medical decision making from both the physicians’ and patients’ perspectives, we previously conducted a qualitative study (22). In this study, we found that numerous factors (n ⫽ 58) influenced decision making, and that rheumatologists and patients consider different factors in their treatment decisions. 1407
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Significance & Innovations ●
Factors influencing the decision to escalate care differ tremendously between rheumatologists and patients. These differences might explain why guidelines to achieve and maintain tight control of disease activity are frequently not adhered to.
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According to patients, their trust and comfort with their rheumatologist are very important factors in their decision to escalate care.
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Better communication between patients and their physicians may improve treatment planning in rheumatoid arthritis patients with active disease.
Qualitative data, however, do not permit measurement of the impact of each of these factors on decision making. The objective of this study was to quantify the relative impact of each of the factors generated in the qualitative study on both rheumatologists’ and patients’ decision making and to subsequently compare the two. Improved insight into the factors that most strongly influence both patients’ and rheumatologists’ decision making is required to develop interventions targeted at improving adherence to guidelines and the quality of care delivered in RA.
SUBJECTS AND METHODS Subjects. We surveyed Dutch rheumatologists and patients with RA. Rheumatologists were asked to participate during the Dutch Rheumatology Congress in September 2009. Consecutive rheumatologists were approached by 1 of 2 medical researchers (LTCvH, WK) to complete the survey on a laptop computer. Dutch rheumatologists that did not participate during the congress were contacted by e-mail and provided with a link to the Maximum Difference Scaling (MDS) survey between October and November 2009. Rheumatologists that did not respond received a reminder within 2 weeks. To recruit patients, clinic staff from 6 outpatient rheumatology clinics (2 in general hospitals, 2 in teaching hospitals, and 2 in university hospitals) were asked to consecutively approach RA patients during the patient’s consultation until at least 200 patients were willing to participate. RA patients currently taking at least 1 traditional disease-modifying antirheumatic drug (DMARD) or a biologic or corticosteroids were eligible to participate. Patients with hearing, visual, and cognitive impairments were excluded. All patients that agreed to be contacted were approached by one of the researchers (LTCvH, RvB), and a telephone appointment to complete the survey was scheduled. Patients completed the survey using a paper or electronic version. In both cases, a research assistant assisted by telephone. The researchers used a standard definition list, based on an official Dutch patient information site, to clarify specific terms as needed (23). Patients were contacted between November 2009 and March 2010.
Factors included in the MDS survey. The factors included in the MDS survey were selected based on those discussed during preparatory focus groups. The focus group discussions (2 focus groups with rheumatologists and 3 focus groups with RA patients) aimed to explore all the factors that could influence treatment-related decisions in patients with active RA as defined by a DAS28 score of 3.2 or greater (22). RA patients were recruited for the focus groups by specialized rheumatology nurses working at the Radboud University Nijmegen Medical Centre. Of the 22 patients that initially agreed to participate, 15 were able to attend the focus group meeting on the scheduled date. The mean ⫾ SD age of the RA patients was 59 ⫾ 9 years. Ten patients were women and 5 were men. Rheumatologists were purposefully recruited to ensure representation of 2 prescribing patterns noted in a previous study (24): those who escalated care (increased dose, added or changed DMARDs) in at least one-third of the visits with patients having a DAS28 score ⱖ3.2 and those that did not. Ten of the 14 rheumatologists approached were able to participate in the focus group on the scheduled date. The other 4 rheumatologists could not participate due to time schedule constraints. Three rheumatologists were women and 40% worked in an academic hospital. Their mean ⫾ SD age was 50 ⫾ 8 years and they had a mean ⫾ SD number of years of experience of 11 ⫾ 7 years. During each focus group, a moderator and an observer were present. The moderator used a script that was developed to include prompts to elicit barriers described in the model by Cabana et al (25). The complete list of factors generated during the focus groups is provided in Supplementary Appendix A (available in the online version of this article at http://onlinelibrary.wiley.com/journal/ 10.1002/(ISSN)2151-4658). Design of the MDS survey. We designed an MDS survey to quantify the relative importance of each factor (26,27). MDS was developed based on random utility theory as an alternative to rating and ranking tasks by Jordan Louviere in 1987. MDS survey subjects were asked to choose the best item from a set of items originated from a master list. The combination and ordering of items differ per task. MDS was chosen for this study because it simplifies ranking tasks for the subject, is well suited for phone interviews, is able to effectively discriminate between ratings of different factors involved in complex decisions, and is not influenced by scale-related biases. We used Sawtooth Software’s SSI Web platform (version 6.6) to design and administer the survey and to analyze the data. Participants were asked to answer 24 choice sets each composed of a set of 5 factors from the master list of 58 items. A representative example of a MDS question, including the introduction text, is provided in Figure 1. In order to create an efficient design, the software took into account the following principles: 1) orthogonality: every item was shown approximately an equal number of times and each item is paired with each other item an equal number of times; 2) minimal overlap: the number of times each item appears within the same set across the
Factors Influencing Patients’ and Rheumatologists’ Drug Decisions
1409 and generates raw scores that can be interpreted as interval data. The scores are then rescaled to 0 –100 on a ratio scale and importance scores sum to 100. We calculated the mean relative importance scores (RIS) for each item and subsequently compared the scores between rheumatologists and patients. In addition, 20 independent-sample t-tests were performed to compare the top 10 importance scores between rheumatologists and RA patients. We calculated the absolute difference between the importance scores as well as the relative importance differences by dividing the mean RIS of the rheumatologists by the mean RIS of the patients to obtain a ratio. Because of multiple testing, a conservative P value of less than 0.001 (0.05/20 ⫽ 0.003) was considered as a statistical significant difference.
Table 1. Characteristics of patients and rheumatologists* Value
Figure 1. A, The introduction text of the Maximum Difference Scaling (MDS) questionnaire, and B, an example of a MaxDiff question. DMARD ⫽ disease-modifying antirheumatic drug; RA ⫽ rheumatoid arthritis; DAS28 ⫽ Disease Activity Score in 28 joints; CRP ⫽ C-reactive protein; ESR ⫽ erythrocyte sedimentation rate.
entire design is reduced to a minimum; 3) positional balance: each item appears approximately an equal number of times in each position to avoid order bias; 4) connectivity: each item is directly or indirectly linked to another item; and 5) stability: 300 different versions of the questionnaire were used to increase the variation in the way items are combined in order to reduce potential context bias. We also measured the following physician characteristics: age, sex, number of years of experience, work setting (general, teaching, or university), how they spend the majority of their time (patient care, clinical research, administrative duties), and patient characteristics, including age, sex, highest education level, disease duration, patient global assessment of disease activity and pain intensity, both using an 11-point numerical rating scale, and currently prescribed DMARDs. Statistical analyses. Preference data were analyzed using hierarchical Bayes modeling (28,29). First, crude importance scores per item were determined for each individual under the logit rule: the probability of choosing the ith item as most important from a set containing i through j items is equal to P ⫽ eUi/兺(eUij). The estimates are updated by an iterative process. For each iteration, an estimate is made for each item, conditional on current estimates of the other iterations. The process then converges
Patients (n ⫽ 213) Age, mean ⫾ SD years Disease duration, median (IQR) years Women, % Highest educational degree, % Primary school High school College/university Current medication use, %† MTX Hydroxychloroquine Leflunomide Adalimumab Sulfasalazine Etanercept Rituximab Number of DMARDs, % Monotherapy Combination therapy None (corticosteroids only) Disease activity score over the last week on NRS (range 0–10), mean ⫾ SD Pain score over the past week on NRS (range 0–10), mean ⫾ SD Rheumatologists (n ⫽ 106) Age, mean ⫾ SD years Women, % Type of hospital, % General Teaching‡ University Majority of time spent, % Patient care Clinical research Administrative duties Years of experience, mean ⫾ SD
60.0 ⫾ 11.6 7.0 (12.5) 69.5 11.3 68.1 20.7 63.4 18.8 9.4 10.8 11.7 6.6 3.3 63.4 32.8 3.8 5.3 ⫾ 2.6 5.2 ⫾ 2.8 47.2 ⫾ 9.3 49.1 37.7 34.9 27.4 92.5 6.6 0.9 15.2 ⫾ 9.4
* IQR ⫽ interquartile range; MTX ⫽ methotrexate; DMARDs ⫽ disease-modifying antirheumatic drugs; NRS ⫽ numerical rating scale. † Patients could give multiple answers. ‡ A hospital in which doctors are educated to become rheumatologists.
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Table 2. Ten of the most important reasons to escalate care from a rheumatologist’s perspective* Relative importance score, mean ⴞ SD
Swollen joints DAS28 Rheumatologist’s impression of overall disease activity Worsening erosions in the past year Disease activity now compared to 3 months ago Risk factors for more severe RA Physical functioning and mobility Presence of erosions on most recent radiographs Worsening of deformities last year Patient’s willingness to change DMARDs
Ranking
Rheumatologists
Patients
Rheumatologists
Patients
5.24 ⫾ 0.39 5.19 ⫾ 0.54 5.17 ⫾ 0.55
2.57 ⫾ 1.63 2.40 ⫾ 1.56 3.03 ⫾ 1.61
1 2 3
12 17 8
5.15 ⫾ 0.53 5.12 ⫾ 0.60 4.58 ⫾ 1.04 4.38 ⫾ 0.97 4.21 ⫾ 1.44 3.86 ⫾ 1.19 3.61 ⫾ 1.24
2.12 ⫾ 1.62 2.37 ⫾ 1.69 2.17 ⫾ 1.49 4.30 ⫾ 1.07 2.17 ⫾ 1.59 1.88 ⫾ 1.63 1.13 ⫾ 1.21
4 5 6 7 8 9 10
27 19 22 1 23 30 37
* DAS28 ⫽ Disease Activity Score in 28 joints; RA ⫽ rheumatoid arthritis; DMARDs ⫽ disease-modifying antirheumatic drugs.
RESULTS Participants. One hundred six (41%) of the 258 approached rheumatologists agreed to participate; 35 completed the survey during the Dutch Rheumatology Congress and 71 completed the survey over the internet. A total of 279 patients were willing to be contacted, of whom 16 were not reached by phone after several attempts and 50 patients refused to participate, leaving 213 patient participants (76%). Participants’ characteristics are described in Table 1. The study design did not permit data collection describing nonparticipants. Patients’ and rheumatologists’ RIS. The mean RIS for rheumatologists and patients are shown in Tables 2 and 3, respectively. Rheumatologists’ decision making was most strongly influenced by objective measures of disease activity such as the number of swollen joints (mean ⫾ SD RIS 5.24 ⫾ 0.39) and the DAS28 (mean ⫾ SD RIS 5.19 ⫾ 0.54). Physicians’ global assessment, patients’ functional status, poor prognostic features, and patients’ willingness to escalate care were also considered as important factors (Table 2).
Patients were also strongly influenced by physicians’ global assessment and function (Table 3). In addition to patient-related outcomes, the following factors were highly valued by patients: motivation to get better (mean ⫾ SD RIS 3.55 ⫾ 1.41), current satisfaction with DMARDs (mean ⫾ SD RIS 3.41 ⫾ 1.37), and factors related to the patient–physician relationship, such as trust (mean ⫾ SD RIS 3.46 ⫾ 1.63) and level of comfort in expressing concerns (mean ⫾ SD RIS 2.69 ⫾ 1.58). Differences between patients and rheumatologists. The 10 factors with the largest absolute mean differences between physicians and patients are shown in Table 4. It shows, for example, that “trust in the physician” (mean difference 3.09; 95% confidence interval [95% CI] 2.84, 3.33) and “the level of comfort in expressing concerns” (mean difference 2.56; 95% CI 2.34, 2.77) was far more important for patients compared to rheumatologists. In contrast, prognostic features for RA and objective disease activity features, such as the worsening of erosions over the past year (mean difference 3.03; 95% CI 2.79, 3.27) and swollen joint count (mean difference 2.67; 95% CI 2.43,
Table 3. Ten of the most important reasons to escalate care from a patient’s perspective* Relative importance score, mean ⴞ SD
Physical functioning and mobility Patient’s motivation to get better Patient’s trust in their physician Patient’s satisfaction with current DMARDs Painful joints Rheumatologist’s opinion to change DMARDs Patient’s general health Rheumatologists’ impression of overall disease activity Patient’s level of comfort in expressing concerns Presence of generalized bodily pain * DMARDs ⫽ disease-modifying antirheumatic drugs.
Ranking
Rheumatologists
Patients
Patients
Rheumatologists
4.38 ⫾ 0.97 1.93 ⫾ 1.60 0.37 ⫾ 0.56 2.28 ⫾ 1.40 2.98 ⫾ 1.56 3.25 ⫾ 1.36 3.12 ⫾ 1.38 5.17 ⫾ 0.55 0.13 ⫾ 0.16 0.31 ⫾ 0.57
4.30 ⫾ 1.07 3.55 ⫾ 1.41 3.46 ⫾ 1.63 3.41 ⫾ 1.37 3.37 ⫾ 1.38 3.13 ⫾ 1.53 3.12 ⫾ 1.56 3.03 ⫾ 1.61 2.69 ⫾ 1.58 2.67 ⫾ 1.51
1 2 3 4 5 6 7 8 9 10
7 23 45 21 13 11 12 3 54 46
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Table 4. Ten most important differences in importance between rheumatologists and patients*
Reasons to change Patient’s trust in the physician Worsening erosions in the past year DAS28 Disease activity now compared to 3 months ago Swollen joints Patient’s level of comfort in expressing concerns Patient’s willingness to change DMARDs Risk factors for more severe RA Presence of generalized bodily pain
Ranking
Differences in mean scores (95% CI)†
Rheumatologist: patient ratio
Rheumatologists
Patients
⫺3.09 (⫺3.33, ⫺2.84) 3.03 (2.79, 3.27) 2.79 (2.56, 3.03) 2.75 (2.50, 3.01)
0.11 2.43 2.16 2.16
45 4 2 5
3 27 17 19
2.67 (2.43, 2.90) ⫺2.56 (⫺2.77, ⫺2.34)
2.04 0.05
1 54
12 9
2.48 (2.19, 2.76) 2.41 (2.13, 2.70) ⫺2.36 (⫺2.60, ⫺2.13)
3.19 2.11 0.12
10 6 46
37 22 10
* 95% CI ⫽ 95% confidence interval; DAS28 ⫽ Disease Activity Score in 28 joints; DMARDs ⫽ disease-modifying antirheumatic drugs; RA ⫽ rheumatoid arthritis. † Negative values indicate that this factor was more important according to patients.
2.90), were more important to rheumatologists than to patients. Only the current level of physical function and mobility and physician impression of overall active disease were included among both patients’ and physicians’ top 10 factors, and the latter was rated significantly higher for physicians than patients (mean difference 2.14; 95% CI 1.91, 2.39). Four of the rheumatologists’ top 5 items were at least twice as important for rheumatologists compared to patients. The RIS for all items from the rheumatologists’ and patients’ points of view are shown in Figure 2. Further details about the differences in importance of factors are provided in Supplementary Appendix A (available in the online version of this article at http://onlinelibrary.wiley. com/journal/10.1002/(ISSN)2151-4658). Convenience features, such as the need for regular blood tests, were far more important for patients than for rheumatologists (14.3 times more important [1/0.07]) in their decision whether or not to escalate care. The quality of the patient–rheumatologist relationship was one of the most important items for patients and was far less important for rheumatologists (6.4 times more important [1/0.16]). From the rheumatologist’s perspective, a patient’s history of cancer was 8 times more important for them compared to patients. However, it should be noted that history of cancer was not ranked highly by either group. It was the fifty-fourth item in the patient ranking list and the twenty-second item in the rheumatologist ranking list.
DISCUSSION In this study, we found that rheumatologists and patients differ significantly in how they approach treatment decisions for patients with active disease as indicated by a DAS28 score of 3.2 or greater. Rheumatologists are most strongly influenced by objective markers of disease activity, physical functioning and mobility, prognostic markers, and patient willingness to change DMARDs. In contrast, patients are most strongly influenced by physical
functioning and mobility, coping skills, as well as features reflective of the patient–physician relationship, including trust in their rheumatologist, comfort in expressing concerns, as well as the rheumatologist’s opinion. There was no overlap between rheumatologists’ and patients’ top 10 – ranked factors except for physical function and physician global assessment of disease activity. A number of studies have sought to understand how patients and rheumatologists make treatment decisions in RA (5,13–21). These studies were based on specific hypotheses to evaluate a limited set of factors. To the best of our knowledge, this is the first study to quantify the importance of a comprehensive set of factors that influence treatment decisions in RA, and to directly compare patients’ and rheumatologists’ viewpoints. Despite the differences in the methods used across studies, the results described in this study are supported by related findings in the literature (5,13–18,21,30). Two previous surveys among rheumatologists found that “a decrease in disease activity compared to previous visit” and “patient refuses changes in treatment” were important reasons for not changing treatment (5,13). Another survey noted the influence of physicians’ recommendations (16). It showed that a majority of patients did want to follow physicians’ suggestions regarding treatment (71.5%). Martin et al found that a patient’s trust in their physician increased a patient’s confidence in treatment decisions (16,30). However, unlike previous reports, the present study included the breadth of factors influencing both patients’ and physicians’ decision making and required subjects to make tradeoffs between the competing factors, resulting in quantification of preferences and a rank ordered list. The finding that patients and physicians differ substantially in the information they use to decide whether or not to change medications may help explain why treatment is frequently not modified according to clinical guidelines. For example, if a rheumatologist explains how DMARD escalation may help prevent further joint damage but the patient does not endorse this factor as a reason to escalate care, the patient may be reluctant to change treatment.
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Figure 2. Mean relative importance scores for rheumatologists and patients. DAS28 ⫽ Disease Activity Score in 28 joints; RA ⫽ rheumatoid arthritis; DMARDs ⫽ disease-modifying antirheumatic drugs; ESR ⫽ erythrocyte sedimentation rate; CRP ⫽ C-reactive protein; TBC ⫽ tuberculosis.
Moreover, it is important to note the significance that patients place on the quality of the patient–physician relationship. This finding suggests that patients’ trust and comfort with their rheumatologist is a necessary, albeit not sufficient, factor for them to consider adopting a change in treatment. This study has several limitations. Our MDS survey included 58 items (27,31). Since 100 points were divided over 58 items, the range of importance scores was limited, and a specific cutoff separating reasons that are not important cannot be determined. Second, as with other
studies involving self-reported data, the stated importance of reasons in treatment considerations cannot be assumed to accurately reflect decision making in clinical practice. This study was performed among a sample of Dutch rheumatologists and Dutch RA patients, which may limit the generalizability of our results. Given that the DAS was developed in The Netherlands, it is possible, for example, that rheumatologists and patients participating in this study might be more strongly influenced by the DAS. In addition, we were unable to evaluate the impact of previous DMARD use on participants’ decision
Factors Influencing Patients’ and Rheumatologists’ Drug Decisions making. The rheumatologists’ participation rate can be judged as moderate compared to other surveys among rheumatologists (17,21,31). Although we could not recruit a random sample of patients, we attempted to limit selection bias by inviting consecutive patients to participate. In conclusion, we found that RA patients and rheumatologists approach the decision to escalate care differently. These differences might explain why guidelines to achieve and maintain tight control of disease activity are frequently not adhered to. In addition, our findings indicate that the quality of the therapeutic relationship is very important to patients, indicating that effective communication between physicians and patients is requisite for improving the process of decision making, and ultimately of clinical outcomes, in patients with active RA. Further research is needed to determine if decision aids can help patients and physicians better communicate about the decision to escalate care in order to achieve and maintain tight control in RA (32).
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AUTHOR CONTRIBUTIONS All authors were involved in drafting the article or revising it critically for important intellectual content, and all authors approved the final version to be published. Dr. van Hulst had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis. Study conception and design. Van Hulst, Kievit, van Bommel, van Riel, Fraenkel. Acquisition of data. Van Hulst, van Bommel, Fraenkel. Analysis and interpretation of data. Van Hulst, Kievit, van Riel, Fraenkel.
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