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Abstract

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. Acknowledgements
  9. REFERENCES

Objective

To examine if patients with arthritis who reported using complementary and alternative medicine (CAM) were more likely to tell their physicians about their CAM use if they rated their rheumatologist as using a more participatory decision-making style and what reasons patients gave for telling or not telling their rheumatologist about their CAM use.

Methods

A survey that asked about CAM use, health status, demographics, physician use of a participatory decision-making style, and medical skepticism was sent to individuals with arthritis who saw 23 rheumatologists at universities and private practice clinics in North Carolina. Generalized estimating equations were used to analyze the data.

Results

A total of 92% of patients reported using CAM for their arthritis and 54% of these patients discussed their CAM use with their rheumatologist. Women, patients who used more types of CAM, and patients who rated their rheumatologist as using a more participatory decision-making style were significantly more likely to tell their physicians about their CAM use.

Conclusion

Our findings suggest that if rheumatologists use more participatory styles of decision making with patients and involve them when making treatment decisions, patients are more likely to tell them about their CAM use.


INTRODUCTION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. Acknowledgements
  9. REFERENCES

Prior research has examined the extent to which physicians use participatory decision-making styles when interacting with patients with asthma, diabetes, human immunodeficiency virus, and those in general primary care (1–7). Recent work has examined the extent to which patients with arthritis believe their physicians use a participatory decision-making style (8). One study examined the extent to which 102 patients with systemic lupus erythematosus and rheumatoid arthritis (RA) rated their physicians in different areas of communication and how this related to patient trust in physicians (8). One of the communication areas these researchers examined was physician use of a participatory decision-making style. The researchers found that physician use of a participatory decision-making style was not significantly related to patient ratings of trust in physicians.

Sleath et al (9) found that primary care patients with arthritis who rated their family physicians as using more of a participatory decision-making style were more likely to tell their physicians about their complementary and alternative medicine (CAM) use. It is important to better understand reasons why patients do or do not tell their rheumatologists about their CAM use because prior work has found that only half of patients tell their rheumatologists about their use of CAM (10).

Rao et al (10) found that arthritis patients of rheumatologists were more likely to tell their rheumatologists about their CAM use if they had fibromyalgia, regularly used CAM, and used several types of CAM. However, the investigators did not examine whether rheumatologist use of a participatory decision-making style was related to patients telling their physicians about their CAM use. It is important to better understand whether rheumatologist use of a participatory decision-making style is related to patient disclosure of CAM use, because rheumatologists could then be encouraged to use this type of communication style and promote patients to be open about all types of treatments they are using for their arthritis. It is also important to better understand why patients report telling or not telling their rheumatologists about their CAM use so that patients can be educated to 1) overcome the barriers that prevent them from disclosing their CAM use and 2) better understand why it is important to tell their rheumatologist about their CAM use.

The objectives of this study were 3-fold. The first objective was to examine which patient demographic characteristics were related to patients rating their rheumatologists as using a more participatory decision-making style. The second objective, among patients who reported using CAM, was to investigate whether those who rated their rheumatologists as using a more participatory decision-making style were more likely to tell their physicians about their CAM use. The third objective, among patients who reported using CAM, was to describe what reasons patients gave for telling or not telling their rheumatologists about their CAM use.

MATERIALS AND METHODS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. Acknowledgements
  9. REFERENCES

Procedure.

The database used in the current analysis was created as part of an ongoing longitudinal project measuring health-related characteristics of patients with arthritis. Patients seen during an outpatient visit in the rheumatology clinic at the University of North Carolina Hospitals (UNC) or 13 selected private rheumatology practices in North Carolina were asked to participate. Patients who agreed to participate completed a consent form and a baseline self-report questionnaire on demographic and health-related characteristics; diagnosis and disease onset were provided by the patient's physician. Those individuals with RA, osteoarthritis (OA), and fibromyalgia who completed this process and agreed to further contact were mailed the survey described below (n = 2,075).

The individuals who agreed to further contact were mailed 2 survey booklets. The first booklet asked about health, health beliefs, and use of health care. The second booklet was a detailed review of 8 categories of CAM use. After 3 weeks, nonrespondents were contacted again with a second survey, and then again by phone if neither mail survey elicited a response. A total of 51% of the patients responded (n = 1,063). All procedures and surveys were approved by the UNC Institutional Review Board.

Measurement.

The following demographic data were gathered on all respondents: sex, race (African American or white), age, educational level (dichotomized as less than high school, or high school or more), and marital status. Physician diagnoses of OA, RA, or fibromyalgia were measured as dichotomous variables. Physicians provided multiple diagnoses for patients. However, patients with more than 1 type of arthritis were classified in the following order of priority: 1) RA, 2) fibromyalgia, and 3) OA, and only 1 diagnosis was included in the database. This classification method has been used by prior researchers (11).

The Health Assessment Questionnaire (HAQ) (12) was also administered. The HAQ is based on a 4-point scale rating difficulty in performing 20 activities of daily living (0 = without any difficulty and 3 = unable to do). A summary score was obtained by taking the unweighted mean of the responses. The HAQ has acceptable reliability and validity and is widely used to measure physical limitations due to rheumatic diseases (12–15).

Participatory decision-making style was measured using the 3-item scale developed by Kaplan et al (3). The items were 1) “If there were a choice between treatments, would your doctor ask you to help him/her make the decision? (definitely yes, yes, unsure, no, definitely no)”; 2) “How often does your doctor make an effort to give you some control over your treatment? (very often, often, sometimes, hardly at all, not at all)”; and 3) “How often does your doctor ask you to take some of the responsibility for your treatment? (very often, often, sometimes, hardly at all, not at all).” A summary score ranging from 0 to 100 was calculated by summing the responses, dividing by 15, and then multiplying by 100. Higher scores reflected patients rating their physicians as being participatory. Participatory decision-making style was then recoded into a dichotomous variable (score <70 or ≥70). A cutoff point of 70 has been used in previous studies of physician use of a participatory decision-making style (3, 16).

Medical skepticism can be defined as “doubts about the ability of conventional medical care to appreciably alter health status” (17). Medical skepticism was included in our analyses because one could hypothesize that patients who are more skeptical of conventional medical care might rate their physicians as being less participatory. Medical skepticism was measured using 4 items with a 5-point scale that assessed attitudes toward medical care (17).

Use of CAM for arthritis was queried by asking separately about the following 8 areas: 1) use of alternative health providers or therapists; 2) special diets or food plans; 3) vitamins or minerals; 4) herbs, mixtures, or other supplements taken by mouth; 5) rubs, lotions, liniments, creams, or oils; 6) copper bracelets or magnets or other body treatments used; 7) movement activity; and 8) spiritual, relaxation, or mind-body activities. These data were used to create a continuous variable that reflected the number of categories of CAM the patient used (possible range 0–8), and a dichotomous variable (no use/any use).

Whether patients reported telling their physicians about their CAM use was measured as a dichotomous variable (yes/no). Patients who stated that they did not tell their physician were asked why they did not mention it and were given the following options: “I don't believe he/she knows enough about the strategies to advise me,” “There is no reason to tell him/her,” “I don't think he/she would want to know,” “It's none of his/her business,” and “Did not think he/she would approve.” Patients who stated that they did tell their physician were asked why they did mention it and were given the following options: “I want to know more about the strategy,” “I will only take or do something with his/her approval,” “I prefer to have his/her approval (but his/her approval won't necessarily stop me),” “I am concerned about drug interactions (mixing drug/herbal therapies),” “I am concerned the strategy may jeopardize my health,” and “I want my doctor to be fully informed about my health.” The categories were not mutually exclusive; patients could check several reasons for why they told or did not tell their rheumatologist about their use of CAM.

Statistical analysis.

All analyses were performed using STATA software, version 8.0 (StataCorp, College Station, TX). As discussed above, 1,063 patients responded to the survey and were included in the current analysis. However, only 786 patients were included in the multivariable analyses predicting patients' rating of their physician's participatory decision-making style, because 277 respondents had missing data on 1 or more variables included in the generalized estimating equation (GEE) analyses. A total of 153 patients were excluded from the multivariable analyses because of missing data on 1 or more items of the physician style scale, an additional 79 were excluded due to missing data on race, another 21 were excluded for missing data on educational level, and an additional 24 were excluded due to missing data on medical skepticism, age, marital status, or HAQ scores. A GEE analysis was conducted to examine whether patients' rating of their physician's participatory decision-making style was independently associated with patient age, sex, race, educational level, HAQ score, marital status, OA, RA, fibromyalgia, number of CAM types used, and medical skepticism. GEE was used to adjust the standard errors of the regression coefficients to account for the fact that patients are nested within physicians (18, 19).

Next we examined only those patients who reported ever using CAM for their arthritis (n = 979). GEE was conducted to examine the relationship between the independent variables noted above and whether patients reported ever discussing CAM use with their physician. Whether patients rated their physician as participatory was also included as an independent variable. Only 741 patients were included in the GEE analysis because of missing data on 1 or more of the independent variables.

RESULTS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. Acknowledgements
  9. REFERENCES

Patients were seen by 23 participating rheumatologists. Physicians saw anywhere from 2 to 185 of the participating patients (mean ± SD 12.35 ± 7.53, median 13). Patient characteristics are presented in Table 1. Eighty-one percent of the patients were women. A total of 833 (78%) were white and 134 (13%) were African American. Patients ranged in age from 20 to 97 years (mean ± SD 60 ± 12.8). A total of 523 patients (49%) had more than a high school education. Thirty-one percent had OA, 46% had RA, and 27% had fibromyalgia. A total of 979 patients (92%) used ≥1 of the 8 CAM categories mentioned in the survey.

Table 1. Patient characteristics (n = 1,063)*
VariableValue
  • *

    Values are the number (percentage) unless otherwise indicated. CAM = complementary and alternative medicine; HAQ = Health Assessment Questionnaire.

Sex 
 Male203 (19.1)
 Female860 (80.9)
Race 
 African American134 (12.6)
 White833 (78.4)
 Missing96 (9.0)
Education 
 Less than high school171 (16.1)
 High school329 (31.0)
 More than high school523 (49.2)
 Missing40 (3.8)
Currently married 
 No324 (30.5)
 Yes714 (67.2)
 Missing25 (2.4)
Rheumatoid arthritis 
 No574 (54.0)
 Yes489 (46.0)
Osteoarthritis 
 No733 (69.0)
 Yes330 (31.0)
Fibromyalgia 
 No777 (73.1)
 Yes286 (26.9)
Use of CAM 
 None84 (7.9)
 1–2 categories312 (29.4)
 3–4 categories367 (34.6)
 ≥5 categories300 (28.3)
Age, mean ± SD (range) years60 ± 12.8 (20–97)
HAQ score, mean ± SD (range)1.18 ± 0.79 (0–3)

There were 670 patients (63%) who answered yes or definitely yes that their doctor would ask for their help in choosing treatment options, and 575 (54%) stated that their doctor would very often or often give them some control over their treatment. A total of 457 patients (43%) stated that their doctor ask them to take responsibility for their treatment. The mean ± SD participatory decision-making style score was 71.85 ± 19.03 (range 20–100). The median participatory decision-making style score was 73.33. Slightly more than 50% of patients rated their physician as having a high participatory decision-making style score, 35% rated their physician as having a low participatory decision-making style score, and 14% of patients did not provide a rating. Cronbach's alpha for the participatory decision-making style scale in this sample was 0.75, which is similar to findings of previous researchers (2–4).

The results of the GEE analysis predicting whether patients rated their physician as using a more participatory style are presented in Table 2. Younger patients and those using more types of CAM were significantly more likely to rate their physician as using a more participatory style.

Table 2. Generalized estimating equation results predicting whether patients rate their rheumatologists as being more participatory (n = 786)*
VariableOR (95% CI)
  • *

    OR = odds ratio; 95% CI = 95% confidence interval; CAM = complementary and alternative medicine.

  • P < 0.001.

Female sex1.39 (0.96–2.01)
White race0.86 (0.49–1.50)
Age0.96 (0.95–0.97)
High school education or more1.19 (0.74–1.91)
Health Assessment Questionnaire0.86 (0.72–1.03)
Currently married0.82 (0.66–1.02)
Rheumatoid arthritis1.34 (0.73–2.45)
Osteoarthritis1.10 (0.56–2.18)
Fibromyalgia1.21 (0.62–2.35)
Number of types of CAM used1.14 (1.06–1.23)
Medical skepticism0.93 (0.73–1.18)

Of the patients who reported ever having used one of the CAM strategies, 529 (54%) reported having discussed it with their rheumatologist. Many of the patients who reported not telling their rheumatologist about their CAM use did not give reasons as to why they did not discuss their CAM use with their rheumatologist. Ten patients said there was no reason to tell their physician, 4 patients said the medical profession does not know enough, and 2 said they do not think their physician wants to know.

However, the 529 patients who reported telling their rheumatologist about their CAM use reported several reasons for doing so. Eighty percent stated that they wanted their rheumatologist to be fully informed, 45.7% had concerns about drug interactions, 34.6% wanted to know more about the strategy, 28.2% wanted their doctor's approval (although his or her approval would not necessarily stop their use), 24.6% would only use CAM with the rheumatologist's approval, and 24.3% were concerned about the CAM strategy jeopardizing their health.

Table 3 presents the results of the GEE analysis predicting whether patients who reported using CAM discussed their CAM use with their rheumatologists. Women were significantly more likely to tell their rheumatologist about their CAM use than men. Patients who used more types of CAM were significantly more likely to tell their rheumatologists about their CAM use. Patients who rated their rheumatologist as being more participatory were significantly more likely to tell their physician about their CAM use.

Table 3. Generalized estimating equation results predicting whether patients who report using CAM discuss their CAM use with their rheumatologists (n = 741)*
VariableAdjusted OR (95% CI)
  • *

    See Table 2 for definitions.

  • P < 0.01.

  • P < 0.001.

Female sex1.75 (1.19–2.60)
White race0.89 (0.50–1.59)
Age0.98 (0.96–1.01)
High school education or more1.30 (0.98–1.73)
Health Assessment Questionnaire1.07 (0.88–1.29)
Currently married1.01 (0.71–1.44)
Rheumatoid arthritis0.82 (0.42–1.62)
Osteoarthritis1.19 (0.61–2.31)
Fibromyalgia1.02 (0.54–1.93)
Medical skepticism1.02 (0.83–1.25)
Physician uses participatory decision-making style1.78 (1.31–2.41)
Number of types of CAM that patient has used1.23 (1.14–1.32)

DISCUSSION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. Acknowledgements
  9. REFERENCES

Patients rated their rheumatologists as being very participatory. Sixty-three percent of patients reported that their rheumatologist would ask for their help in choosing treatment options. The mean ± SD patient-reported rheumatologist participatory decision-making style score was 71.85 ± 19.03 (range 20–100) in the current study. This is in contrast to the results of a study of patients with arthritis seeing family practice physicians, where the mean ± SD reported family medicine physician participatory decision-making style score by arthritis patients was 59.26 ± 24.52 (9). In the current study, younger patients were significantly more likely to rate their rheumatologist as being more participatory, which is consistent with prior research (9).

Only 529 patients (54%) who reported using CAM for their arthritis discussed their CAM use with their rheumatologist. A similar study of patients with arthritis seeing family medicine physicians found that 71% of patients disclosed their CAM use to their physician (9). Patient rating of rheumatologists' decision-making style as more participatory was significantly related to patients telling their rheumatologist about their CAM use. This finding suggests that if rheumatologists involve patients with arthritis in treatment decisions, patients might be more likely to disclose everything they are using to treat their arthritis.

Perlman et al (20) emphasize the importance of rheumatologists discussing CAM with their patients because chronic musculoskeletal conditions are the leading indication for use of CAM. The authors state that there is a need to get beyond the current “don't ask, don't tell” approach that characterizes many physicians' attitudes toward CAM (20). Eisenberg (21) points out that advising patients who use CAM represents a professional challenge. However, Eisenberg suggests using a step-by-step strategy where physicians and patients can proactively discuss the use or avoidance of CAM. The strategy involves a formal discussion of patients' preferences and expectations, the maintenance of symptom diaries, and followup visits to monitor for potentially harmful situations.

Daltroy (22) emphasizes that rheumatologists and patients should have shared goals for treatment and that doctors and patients should agree on treatment goals and set priorities together to enhance patient adherence. In order for rheumatologists and patients to set priorities for treatment together, patients need to disclose all traditional and CAM treatments that they are using for their arthritis. Rheumatologists could attempt to ask patients at least 1 question about CAM. Lazar and O'Connor (23) recommend that physicians ask patients during every medical encounter, “What else are you doing for your health/this problem?” followed by additional prompts such as “any acupuncture? any herbs?” Therefore, for example, rheumatologists could ask, “What else are you doing for your rheumatoid arthritis?” followed by specific prompts. The need for physician inquiry into patient CAM use is underscored by research indicating that 17% of physicians never ask about CAM use and 52% ask about it less than half the time (24).

Also, rheumatologists could encourage patient reporting of CAM use by citing some of the reasons given by patients in the current study concerning why they told their rheumatologist about their CAM use: it helps the rheumatologist be fully informed of everything the patient is doing for his or her arthritis, it allows the rheumatologist to make sure there are no drug interactions, and the rheumatologist can inform patients of any risks the CAM strategy might pose to their health. We believe that if rheumatologists ask even 1 question about CAM use, it can potentially demonstrate to patients that their rheumatologists want to know everything that patients are using for their arthritis.

Female patients and patients who used more types of CAM were significantly more likely to report telling their rheumatologist about their CAM use. The finding that patients who used more types of CAM were more likely to tell their rheumatologist about their use is consistent with prior research (9, 10). Our finding that male patients were less likely to tell their rheumatologist about their CAM use suggests that physicians need to especially make sure to ask male patients about their CAM use.

There are limitations to the study. First, the study was only conducted in 1 state. A second limitation is that patient ratings of rheumatologists' participatory decision-making style were used rather than examining actual rheumatologist-patient communication. Future research should audiotape actual visits of patients with arthritis in rheumatology clinics so that the actual interaction style of rheumatologists can be measured. Future research should explore whether younger patients are more likely to rate their physicians as being more participatory because 1) younger patients are more likely to be actively involved and ask more questions of their rheumatologists during their medical visit and they therefore perceive their rheumatologists as more participatory or 2) rheumatologists are more participatory with younger patients. Future research should also examine whether patients want their rheumatologist to use a participatory decision-making style (25).

Despite these limitations, the study provides new knowledge about patient reports of rheumatologists' participatory decision-making style and how this is related to communication about CAM. Our findings indicate that there is a need for improved communication about CAM between rheumatologists and their patients. Improved communication about CAM could help rheumatologists understand everything patients are doing for their arthritis conditions and could give rheumatologists the opportunity to tell patients what types of CAM to avoid.

AUTHOR CONTRIBUTIONS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. Acknowledgements
  9. REFERENCES

Dr. Sleath 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 design. Sleath, Callahan, DeVellis.

Acquisition of data. Sleath, Callahan.

Analysis and interpretation of data. Sleath, Callahan, DeVellis, Beard.

Manuscript preparation. Sleath, Callahan, DeVellis, Beard.

Statistical analysis. Sleath, Beard.

Acknowledgements

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. Acknowledgements
  9. REFERENCES

We would like to thank Shannon Currey, Teresa J. Brady, Joseph Sniezek, Peg Allen, and Carla J. Herman for assistance with questionnaire development, and Thelma J. Mielenz for database assistance. We would also like to thank the following physicians for encouraging their patients to participate in our database and outcomes studies: H. Vann Austin, Franc Barada, Robert Berger, Mary Anne Dooley, William Gruhn, Robert Harrell, Tatiana Huguenin, Beth Jonas, Joanne Jordan, Fathima Kabir, Elliott Kopp, Andrew Laster, Kara Martin, Gwenesta Melton, Nicholas Patrone, Kate Queen, Westley Reeves, Hanno Richards, Alfredo Rivadeneira, William Rowe, Gordon Senter, Paul Sutej, Claudia Svara, Anne Toohey, William Truslow, John Winfield, and William Yount.

REFERENCES

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. Acknowledgements
  9. REFERENCES