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Keywords:

  • Patient-physician relationship;
  • Patient's preference;
  • Patient participation;
  • Mutual understanding;
  • Japan

Abstract

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES
  9. APPENDIX A
  10. APPENDIX B

Objective

To examine how patients' preferences for decision making in the medical encounter affect the association between their participation style and the feeling of being understood by the physician.

Methods

The study group comprised 115 patients with rheumatoid arthritis who were under continuous care by 8 rheumatologists at a university-affiliated rheumatology clinic in Tokyo, Japan. A questionnaire was distributed just after each encounter, in which patients' self-reported participation in communication during the visit, preference for decision making, and the feeling of being understood were measured. The feeling of being understood was regressed on the participation style and preference for decision making after controlling for demographic and functional variables.

Results

Patient participation in visit communication was positively associated with the feeling of being understood. This relationship was moderated by patients' preference for decision making. Patients with higher preference for decision making were more likely to feel understood when they more actively participated in visit communication, whereas this relationship was weaker among those with lower preference for decision making.

Conclusion

Inviting patients to participate in visit communication may not always enhance the feeling of being understood by the physician when patients have less preference for autonomous decision making in the relationship with the physician. Exploring patients' preferences in the relationship would help physicians understand what the patient expects from visit communication and tailor their practice style to meet patients' needs.


INTRODUCTION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES
  9. APPENDIX A
  10. APPENDIX B

Understanding patient views of illness experiences provides the basis for a therapeutic relationship between patient and physician (1). This is especially true in cases of chronic diseases such as rheumatoid arthritis (RA), where a broader range of a patient's daily life beyond functional and clinical status is affected but often ignored (2, 3). It has long been acknowledged that patients and physicians tend to have different, sometimes conflicting views on health problems and expectations for management plans. Previous studies have identified that there often exists an incongruity between the patient and rheumatologist regarding the perception of problems (4–7), and a significant proportion of patients have unmet expectations after their medical visits (8, 9).

As a recent qualitative study has suggested, patients with RA want to be seen as a holistic entity, and want to be understood in their pain, concerns, and suffering by the physician (10). The perception of being understood by the physician provides an emotional support for patients, especially at a time of great stress and vulnerability (11), and may also lead to better patient adherence and health outcomes (12–15). Because communication is a fundamental means for the physician and patient to share each other's perspectives, active patient participation in communication has been considered a key to bridging the gap between the patient and physician. Previous studies have suggested beneficial effects of patient participation in communication during the visit and decision making on patient outcomes (16–18).

Patient participation is especially relevant for rheumatic disease, in which medical decisions are less likely to be urgent, tradeoffs among various treatments are often closely balanced, and the patient's cooperation in carrying out the decision is necessary (4). In contrast, patients' preferences for decision making in the relationship with the physician considerably differ by their sociodemographic characteristics such as age, sex, and socioeconomic status, as well as situational characteristics such as health status, severity of disease, or type of diseases (19–22). Although active patient participation has been regarded as an optimal style of the patient-physician relationship, other previous studies detected that some patients prefer to rely on the physician (16).

The aim of the present study was to examine how patients' preferences for decision making affect the relationship between their participation style in visit communication and the feeling of being understood by the physician among patients with RA. More specifically, we examined the following hypotheses: 1) patients who more actively participate in visit communication are likely to feel understood by the physician, and 2) patients' preferences for decision making in the relationship with the physician moderate this relationship. That is, patients who prefer autonomous decision making would benefit more from participating in the communication.

PATIENTS AND METHODS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES
  9. APPENDIX A
  10. APPENDIX B

Role of the study sponsor.

The Pfizer Health Research Foundation provided a non-restrictive research fund that covered data collection and other administration costs of the current study, approved the content of the manuscript, and agreed to submit the manuscript. The views expressed in this study are the authors' and do not represent those of the Pfizer Research Foundation.

Patient recruitment and study procedures.

Participants in this study were outpatients with RA of >6 months' duration who were under continuous care by 8 rheumatologists for >3 months at a university-affiliated rheumatology clinic in Tokyo, Japan. A total of 138 eligible patients were consecutively identified during the 2-month study period. Of these, 2 patients were excluded because of a diagnosis other than RA (osteoarthritis and RA with a coexisting cancer). An additional 2 patients were excluded because they were accompanied by a third person during the visit, and the dynamics of interaction in triads may have differed from that of dyad cases. Furthermore, 16 patients refused to respond to the questionnaire because of lack of time, severity of the disease, or failure to comprehend the purpose of the study.

A questionnaire was distributed just after each encounter so that the contents of the questionnaire would not interfere with patients' behaviors during the visit. Patients were asked to return a completed questionnaire by mail within 2 weeks. Consequently, 115 questionnaires (3 nonresponders) were available for the analysis.

Oral and written informed consent was obtained from the participating patients at recruitment. This study was conducted with the approval of the Ethical Review Committee at The University of Tokyo, School of Medicine.

Measures.

Patient characteristics.

Age was used as a continuous variable. Male sex was coded as 0 and female sex as 1. Educational attainment was used as an ordinal variable. Physical function was measured by the dexterity subscale of the Arthritis Impact Measurement Scales 2 and was normalized to a 0–100 range, with higher scores indicating better physical function (23, 24).

Patients' preferences for decision making.

A 4-item scale was developed based on the Autonomy Preference Index (25, 26) to measure patients' general preferences for autonomous decision making in the relationship with the physician (following the physician's recommendation, not arguing about the physician's decisions, making an autonomous decision, and leaving decisions up to the physician; Cronbach's α = 0.70) (Appendix A). Each item of the scale was rated on a 5-point scale, and was summed and divided by the number of the items completed. The theoretical range of each scale is 1–5, with higher scores indicating higher preference for decision making.

Patients' self-reported participation

Self-reported participation was measured with 6 items asking whether patients have asked the physician for a specific treatment or examination, asked about treatment options, asked for a detailed explanation, expressed their opinion, asked everything they wanted to ask, and told everything they wanted to tell the physician. The total number of items to which the patient answered yes represents that patient's score of participation. The theoretical range is 0–6, with higher scores indicating more active participation.

Patients' feelings of being understood

The feeling of being understood was measured with 5 items asking the extent to which the patient believed his or her physician understood his or her pain, concerns, anxiety, emotions, and goals (Cronbach's α = 0.86) (Appendix B). Each item was rated on a 5-point scale, and was summed and divided by the number of items completed. The theoretical range of the scale is 1–5, with higher scores indicating that the patient felt understood by the physician.

Statistical analysis.

First, Pearson's correlation coefficients were calculated to explore associations of patients' basic characteristics with their preferences for decision making, self-reported participation, and feelings of being understood. Then, the feeling of being understood was regressed on patients' preferences and reported participation, controlling for patient demographic and functional characteristics. Because the patients were recruited from 8 rheumatologists, the linear regression analysis with robust variance estimates was used to compensate for the within-group correlations among patients seeing the same rheumatologist. Furthermore, the interaction term between patients' preferences and participation was added to the model to see how the association between feelings of being understood and reported participation was affected by the moderating effect of patient preference. Statistical analysis was conducted with STATA, version 8.0 (StataCorp, College Station, TX).

RESULTS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES
  9. APPENDIX A
  10. APPENDIX B

Descriptive results.

The basic characteristics of the participants and mean scores of the measured scales are shown in Table 1. The mean age of the patients was 58.5 years, and the mean disease duration since the first diagnosis was 13.3 years. The mean value of the dexterity subscale was >70 points, suggesting that patients' physical function was relatively preserved.

Table 1. Patient characteristics and mean scores on the measured scales (N = 115)*
CharacteristicValue
  • *

    Values are the mean ± SD unless otherwise indicated.

  • The dexterity subscale of the Arthritis Impact Measurement Scales 2.

Sex, no. (%) 
 Male23 (20.0)
 Female92 (80.0)
Educational attainment, no. (%) 
 Middle school14 (12.2)
 High school58 (50.4)
 Vocational school17 (14.8)
 2-year college13 (11.3)
 University or higher11 (9.6)
 Missing2 (1.7)
Age, years58.5 ± 10.0
Disease duration, years13.3 ± 9.4
Physical function (theoretical  range 0–100)70.8 ± 26.7
Preference for decision making  (theoretical range 1–5)2.74 ± 0.74
Self-reported participation  (theoretical range 0–6)2.77 ± 1.23
Feelings of being understood  (theoretical range 1–5)3.70 ± 0.53

The mean age of the participating physicians, in contrast, was 34.5 years (range 27–50), and all of them were men. The patients had seen their physician at this outpatient service for a mean ± SD of 3.6 ± 4.4 years (data not shown).

Associations of basic patient characteristics with patients' preferences for autonomous decision making, self-reported participation, and the feeling of being understood are shown in Table 2. Younger patients, women, and those with higher educational attainments were likely to prefer autonomous decision making in the relationship with the physician. Educational attainments were also positively related to patients' self-reported participation during the encounter. None of the basic characteristics was significantly associated with the feeling of being understood. In contrast, patient preference for decision making was positively correlated with both reported participation and the feeling of being understood. Patient participation was positively related to the feeling of being understood.

Table 2. Correlations of preference for decision making, reported participation, and the feeling of being understood*
 Preference for decision makingSelf-reported participationFeeling of being understood
rPrPrP
  • *

    N = 109–113 due to missing values.

  • The dexterity subscale of the Arthritis Impact Measurement Scales 2.

Age−0.39< 0.0010.060.4930.090.346
Sex (male = 0, female = 1)0.240.0090.050.6050.170.075
Education0.200.0360.220.0180.100.308
Physical function0.050.574−0.080.4130.090.349
Preference for decision making0.210.0250.210.029
Self-reported participation0.36< 0.001

Influence on patients' feelings of being understood.

In the regression analyses (Table 3), patients' sex was significantly related to the feeling of being understood by the physician, suggesting that female patients were more likely to feel understood. Self-reported participation was positively related to the feeling of being understood, even after controlling for other patient characteristics. Patient preference for decision making did not have a significant main effect, whereas the interaction with patient participation turned out to be significant in model 2. This suggested that patients with a higher preference for decision making had a positive association between the extent of their reported participation and the feeling of being understood by the physician, whereas such a relationship was less evident among those with a lower preference for decision making (Figure 1).

Table 3. Factors related to patients' feelings of being understood: results of multivariate linear regression analysis*
 Model 1Model 2
βSEPβSEP
  • *

    N = 107 due to missing values.

  • R2 = 0.193.

  • R2 = 0.219.

  • §

    The dexterity subscale of the Arthritis Impact Measurement Scales 2.

Age0.0100.0070.1800.0110.0070.147
Sex (male = 0, female = 1)0.2220.0930.0480.2450.0930.034
Education0.0050.0400.9080.0030.0380.939
Physical function§0.0020.0010.2200.0020.0010.195
Preference for decision making0.1350.0760.1200.1130.0760.181
Self-reported participation0.1260.0310.0050.1400.0360.006
Preference × participation   0.0890.0300.021
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Figure 1. Estimated relationship between patient participation and the feeling of being understood (see Appendix B) by level of patient preference for decision making. The slopes were estimated based on model 2 of Table 3 when patient preference was 1 SD below the mean for low (2.0) and above the mean for high (3.5), with all other variables set at the mean.

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DISCUSSION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES
  9. APPENDIX A
  10. APPENDIX B

For decades, patients' preferences for involvement in medical care have been extensively studied in other medical settings, although surprisingly few studies have focused on patients with RA, despite the importance and uniqueness of the patient-physician relationship in this field. The present study attempted to explore how patients' preferences for decision making affect the association between reported participation in visit communication and the feeling of being understood by the physician among patients with RA. Both of the study hypotheses were supported. As anticipated, patients were likely to feel understood by the physician when they perceived that they had more actively participated in visit communication. Furthermore, it was suggested that this relationship between patient participation and the feeling of being understood might differ depending on patients' decision-making preference. Among patients who prefer autonomous decision making, the likelihood of feeling understood was positively associated with the extent of reported participation in visit communication, whereas such a relationship was less evident among those with a lower preference for decision making.

In the concept of shared decision making, it has been assumed that the patient and physician, who may have different views on health problems, will build trust and reach mutual agreement through exchanging their preferences and information (27). This concept fits our finding for patients with a higher preference for autonomous decision making. These patients were likely to achieve a sense of being understood by their physician through actively participating in visit communication. Street and colleagues have suggested that active patient participation is influenced not only by patients' beliefs about control in the patient-physician relationship, but also by the physician's use of partnership-building statements (28). In dealing with patients who prefer autonomous decision making, it will be important for the physician to invite patients' participation and to have a sufficient information exchange during the visit to achieve the sense of mutual understanding. Previous findings have suggested that an intervention to improve patients' skills for participating in care is effective in increasing their actual participation in visit communication and shared decision making (29).

In contrast, for patients with a lower preference for decision making, participating in visit communication had less influence on the feeling of being understood by the physician. This finding suggests that inviting patient participation and providing information to help the patient's rational decision may not always enhance the patient's perception of being understood. A previous study of patients with RA indicated that when patients perceive their situation to be overwhelming and uncontrollable by themselves, believing vicarious control over the disease by health care providers, rather than believing their own autonomous control, could be a fallback strategy of coping (30). Also, it has been reported that patients in the Japanese general population who believe their health is dependent on influential others tend to seek information from the physician for rapport building rather than decision making (26). Our measure of patient participation primarily focused on rational information exchange with the physician, which should be an important prerequisite for autonomous decision making. This may partly explain why the extent of patient-reported participation in information exchange was less influential on the patient's sense of being understood by the physician among those with a lower preference for autonomous decision making. Our results have also suggested that inviting patient participation would not have a negative impact even among patients with a lower preference for autonomous decision making. Numerous studies have reported that most patients want as much information as possible from their physician. However, it seems that the reasons behind their desire for information are quite different among patients, and their preference for taking an active role, particularly their decision-making preference, may interact with this reason. Disregard for such contexts of individual patients has sometimes resulted in failures of autonomous decision making (31). It may be plausible that patients with a higher preference for an active role perceive the information exchange as instrumental support for their decision making, whereas those with a lower preference could consider it as the physician's expression of concern and care for their situation if the information is provided in a manner that can help them make sense out of their illness experiences. In this sense, patient preference for an active role could be considered a key to understanding individual patient contexts, expectations, and unrevealed/unnoticed agendas for the medical visit.

Furthermore, patient preference may be subject to change by psychoeducational interventions, and the physician's consultation style inviting patient participation could provide a positive reinforcement. It has been indicated that greater patient self efficacy and skills in interacting with physicians may lead to more active participation in medical care (32). Self-management education that enhances patients' sense of control over their illness could alleviate their anxiety and activate their preference for autonomous decision making in the relationship with the physician.

Some limitations and methodologic issues should be noted in interpreting the results of this study. First, this study was conducted at a single university hospital in a metropolitan area with a convenient sample of patients who had an established relationship with their physician. Also, the findings may be specific to Japanese contexts. Although this may limit the generalizability of our findings, it is noteworthy that the difference in preferences was observed in this relatively homogenous sample of patients. Although sociocultural context as well as practice style may be different between Japanese and Western settings, the association in our study between patients' characteristics and their preference for decision making in the patient-physician relationship was generally similar with what previous studies have found (21, 22).

Second, due to the limited number of physicians in our sample, we were unable to examine potential effects of physician characteristics such as age and sex, as well as physician preference in the patient-physician relationship. In particular, it has been indicated that physician sex and sex concordance between the physician and patient may affect the pattern of patient-physician communication as well as patient evaluation of care (33, 34). However, thanks to the homogenous nature of the physician characteristics, we could focus on the effects of the patients' different preferences on their perception.

Third, we used patient self reports instead of objective measures of participation (e.g., functional interaction analysis) because the former are more likely to reflect patients' perceptions of the interaction with the physician. Although objective measures did correspond to patient self reports to a certain extent, this finding might constitute different aspects of communication from the patient's perception (35, 36). Research using objective measures of patient participation may provide complementary yet distinctive information to our findings.

Fourth, the cross-sectional nature of this study limits our ability to make an inference on a causal relationship. Although our conceptual model assuming that patients' preferences influence their perception and behaviors may sound theoretically reasonable, further psychoeducational intervention would be required to clarify how preferences can be modified and affect the sense of being understood.

Finally, patients were asked about their preferences after the encounter rather than before, assuming that their pre- and postvisit preferences would be similar because all patients in this study were continuing patients who had an established relationship with their physician. In contrast, patients' preferences should not be stable over time. Especially in the case of patients with RA, preference is likely to change with the course of the disease as well as with the development of the relationship with the physician, which should be explored in future research.

Despite these limitations, this study has found that strategies to enhance patients' feelings of being understood might vary depending on the patient's preference, which would be embedded in their illness experiences. Cassell (11) has emphasized that understanding and healing the illness is an important function of medicine in addition to curing the disease. It is important for physicians to be aware of the differences among patients, and to adopt flexible strategies of patient interaction that can identify and accommodate their patients' needs and preferences. Exploring patient preference for decision making may help the physician better understand what the patient expects from communication with the physician and reach mutual understanding with the patient.

Acknowledgements

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES
  9. APPENDIX A
  10. APPENDIX B

We sincerely thank all physicians and patients who participated in this study at the rheumatology clinics in the University of Tokyo Hospital. Special thanks to Dr. Kyoko Nomura for her helpful comments, and to the late Dr. Lawren Daltroy for his help in the early stage of study design.

REFERENCES

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES
  9. APPENDIX A
  10. APPENDIX B

APPENDIX A

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES
  9. APPENDIX A
  10. APPENDIX B

PATIENTS' PREFERENCES FOR DECISION MAKING (4 ITEMS; ORIGINALLY IN JAPANESE)

To what extent do you agree/disagree with each of the following comments regarding a relationship between the doctor and the patient in general?

  • a
    You should go along with doctor's advice without question.
  • b
    You will have a better treatment if you just accept doctor's decision.
  • c
    It is important for you to completely understand and make a decision about your care even if it may put the relationship with the doctor in jeopardy.
  • d
    You should better leave decision about your care up to the doctor when you do not understand it well. 1. strongly agree 2. agree 3. uncertain 4. disagree 5. strongly disagree

APPENDIX B

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES
  9. APPENDIX A
  10. APPENDIX B

PATIENTS' FEELINGS OF BEING UNDERSTOOD (5 ITEMS; ORIGINALLY IN JAPANESE)

To what extent do you think your doctor understood you in

  • a
    the level of pain you had?
  • b
    concerns you had about your disease?
  • c
    concerns you had about side effects of the drug you currently took?
  • d
    feelings you had with illness experience?
  • e
    treatment goals you had for a time? 1. all 2. almost all 3. somewhat 4. not much 5. not at all