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Keywords:

  • Rheumatoid arthritis;
  • Information need;
  • Decision making

Abstract

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

Objective

To measure the need for information about rheumatoid arthritis (RA) and the level of desire for involvement in treatment decisions among patients with RA. To examine the relationship between these preferences and what factors (sociodemographic, disease, treatment, level of disability, and level of knowledge about RA) associate with these preferences.

Methods

Questionnaire surveys were mailed to a randomly selected group of 600 patients with RA. Need for information and desire for involvement in decision making were measured using a validated tool (the Autonomy Preference Index).

Results

The response rate was 57.3%. The need for information was very high. Information seeking preference scores (median 82.5, interquartile range 80.0–92.5) were significantly higher (P < 0.001) than decision making preference scores (mean ± SD 56.4 ± 13.6). Need for information and for decision making were both higher in women than men, and associations with these needs differed in men and women. However, younger age and greater knowledge of RA predicted greater need for decision making. There was no correlation between need for information and for involvement in treatment decisions for either sex (women: rs = 0.09, P = 0.19; men: rs = −0.06, P = 0.54).

Conclusion

There was a high level of need for information among patients with RA. Desire for involvement in treatment decision making was significantly lower and did not correlate with need for information. Associations with these needs differed for men and women.


INTRODUCTION

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

Patient empowerment is increasingly advocated (1) and has been associated with better satisfaction (2), concordance with treatment (3), and improved health outcomes (4). The process of empowerment includes providing patients with information and involving them in decisions about their treatment. Assessing the need for information about the disease and the level of desire for involvement in treatment decisions is especially important in rheumatoid arthritis (RA) because it is a chronic disease and because patients are usually advised to take potentially toxic disease-modifying antirheumatic drugs (DMARDs) that may be only partially effective.

Studies among some medical patient groups have found a high level of need for information (5, 6). Provision of RA information booklets and standard drug information sheets to all patients with RA taking DMARDs is now widespread (7). Only 1 previous study has examined correlates of need for information among people with RA (8). This survey, carried out in the United States, found that most people with RA want to be fully informed about their prognosis and treatment. Female sex, being employed, and higher educational level were predictors of need for information. Studies investigating the extent of patient desire for involvement in treatment decisions in other conditions have given different results. A study of patients with cancer found high levels of desire for participation (5), but a study of patients with hypertension found that 63% wished to leave decision making entirely up to the physician (6). To our knowledge, no studies have investigated preference for involvement in treatment decisions among patients with RA. However, a Norwegian survey of people with RA used a single question to ascertain patients' perception of involvement, and found that around one-third of respondents reported no sense of influence on therapeutic decisions (2).

It often is assumed that preference for disclosure of information about disease equates to a desire for autonomy in treatment decision making, but among primary care patients, this was not the case (9). This relationship has not been explored among people with RA. Little is known about correlates of need for information and level of desire for involvement in treatment decisions, with most studies exploring only sociodemographic factors. We postulated that disease features and DMARD experiences may associate with these preferences. For example, patients who have more severe disease may desire more involvement in decision making, and those who have had adverse experiences of DMARDs may require more information about their treatment. We also postulated that patients with less knowledge about RA would express a greater need for information, and that well-informed patients are more likely to prefer to be involved in treatment decisions.

Our aims in this study were to measure, using validated tools, the need for information and the level of desire for involvement in treatment decisions among patients with RA. In addition, we wished to explore the relationship between these preferences and to examine factors associated with these preferences.

PATIENTS AND METHODS

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

Questionnaire.

A self-report questionnaire was designed to collect data on 5 key topics: information-seeking and decision making preferences, knowledge of RA, disease features, DMARD experience, and sociodemographic factors.

Information-seeking and decision making preferences were determined using the previously validated Autonomy Preference Index (9). This consists of an 8-item information seeking preference scale (ISPS) and a 15-item decision making preference scale (DMPS). The latter includes 6 general items, which were used in this study. The remaining items of this scale are statements regarding management of upper respiratory tract infection, hypertension, and myocardial infarction and were omitted. Participants responded to each item about their arthritis on a 5-point Likert scale, with choices ranging from “strongly disagree” to “strongly agree.” Strongest preferences in favor of information seeking or decision making are assigned scores of 5 and weakest a score of 1. Scores were converted to a 0–100 scale, with 100 representing strongest preferences.

Knowledge of RA was determined using the Arthritis Knowledge Questionnaire RA-specific subscale form B (10). This consists of 11 items assessing general knowledge about RA and drug treatments. For each question, respondents selected 1 correct answer from 5 possible answers, including a “don't know” option. A percentage score was calculated. At a departmental meeting, 2 questions were altered to reflect changes in prescribing practice. In 2 drug-specific questions, sulfasalazine was substituted for hydroxychloroquine, and methotrexate for azathioprine because the former are now much more frequently prescribed. The sources used by participants to obtain information about RA were documented. We also asked whether or not they knew of and had attended our arthritis education program and if they considered that they had received sufficient information about their arthritis and its management from our department.

The following disease features were recorded: duration of RA and functional status as measured using the Multidimensional Health Assessment Questionnaire (11). The latter includes the modified Health Assessment Questionnaire, items on advanced activities of daily living, and visual analog scales (VAS) for pain and fatigue.

DMARD experience was determined by evaluating the number of years having taken DMARDs, the number of DMARDs taken to date, and any DMARD adverse effects (referred to as “bad side-effects” in the questionnaire).

The following sociodemographic factors were recorded: age, sex, highest educational level achieved, and current employment status.

Survey population.

Ethical approval was obtained from the Southern Derbyshire Local Research Ethics Committee (LREC). The questionnaire was piloted with 10 outpatients with RA and was subsequently modified to improve clarity. The questionnaire was then mailed to 600 people with RA registered with our electronic DMARD-monitoring database (these were the first 600 on the database, sorted in alphabetical order by surname). The only exclusion criterion was age <18 years. Postage-paid envelopes were provided for return of the questionnaires. The LREC required all replies to be anonymous and therefore reminders to nonrespondents could not be sent.

Data analysis.

Data were checked for accuracy and analyzed using SPSS version 10.1 (Chicago, IL). ISPS and DMPS scores were treated as linear variables. Scores were summed and expressed on a scale of 0–100, where 0 indicates very low and 100 indicates very strong preference for disclosure of information or involvement in treatment decisions. Sex-specific analyses were performed because previous studies have shown sex-specific preferences (8, 12). Two-tailed t-tests and Pearson's correlation coefficients were used for normally distributed data (e.g., DMPS scores), and the Mann-Whitney U test, Kruskall-Wallis test, and Spearman's rho were used for nonparametric data (e.g., ISPS scores). Variables significantly associated with decision making preference in bivariate analyses were then included in a hierarchical linear regression. Immutable demographic factors, such as age, were entered first to determine whether other variables made an independent contribution to the variance of the dependent variable.

RESULTS

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

Response rate.

Of the 600 questionnaires sent, 344 were returned; a response rate of 57.3%. Nonrespondents were similar to the total sample mailed in terms of age and sex.

Patient characteristics.

Of the respondents, 67% were women, 50% were age >65 years, 63% had no formal educational qualifications (started school at age 5 or 6 and left at age 14 or 15 with no education certificates), 50% were retired, and 23% had retired due to ill health. Median disease duration was 13.3 years (interquartile range [IQR] 6–25 years). The mean ±SD modified Health Assessment Questionnaire score was 1.92 ± 0.64. The mean ± SD fatigue VAS was 57.0 ± 28.2 mm, and the mean ± SD pain VAS was 47.7 ± 25.0 mm. Of the respondents, 91% were taking DMARDs and 55% reported having had an adverse reaction. The reported median number of DMARDs used was 3.0 (IQR 2–5) over a median duration of 10.0 years (IQR 4–19 years). The mean ± SD RA knowledge score was 51.8 ± 23.3. Women scored higher than men (mean ± SD 54.4 ± 23.8 versus 45.5 ± 22.0; t = 3.24, P < 0.001). Those who had attended the departmental arthritis education program had significantly higher scores than those who had not (59.3 ± 21.5 and 49.1 ± 24.2, respectively; t = 3.07, P = 0.002).

Level of need for information and information sources used.

There was a very high level of need for information in both sexes, although more so in women. The median ISPS score for women was 85.0 (IQR 80.0–92.5) and for men it was 82.5 (IQR 77.5–90.0; Z = −1.92, P = 0.05). Need for information assessed by the statement “You should be given information only when you ask for it” was high, as 74% of participants felt that information should be given freely without having to ask. However, this proportion was lower than the level of need expressed by responses to the other statements (Table 1). In response to the question “Do you feel that you have received enough information about your arthritis and its treatment?” 62.1% of respondents had received just the right amount, 16.1% had received more than enough, and 21.8% had not received enough information. ISPS scores did not differ for these groups (F = 1.85, P = 0.14).

Table 1. Percentage of respondents agreeing or strongly agreeing with information seeking preference scale statements
 Agree or strongly agree, %
As you become sicker you should be told more and more about your illness (n = 338)95.2
You should understand completely what is happening inside your body as a result of your illness (n = 339)97.0
Even if the news is bad you should be well informed (n = 340)96.8
Your doctor should explain the purpose of your laboratory tests (n = 339)97.6
You should be given information only when you ask for it (n = 338)19.2
It is important for you to know all the side effects of your medications (n = 340)97.9
When there is more than one way to treat a problem, you should be told about each (n = 340)98.2
Information about your illness is as important to you as treatment (n = 340)94.7

Doctors and nurses were the main sources of information, with fewer than half recalling receiving information from occupational therapists or physiotherapists (Figure 1). The mean number of sources of information used was 2.9 ± 1.5. More than half obtained information from charities, such as Arthritis Care and the Arthritis Research Campaign, but only one-third read arthritis books and magazines; use of the Internet was low. Of respondents, 58.8% were aware of our departmental arthritis education program and 25.6% had attended this course. Preference for information did not significantly differ for those who had and had not attended the program, although there was a tendency for preference being lower in nonattendees (median ISPS for attendees was 87.5, median ISPS for nonattendees was 82.5; Z = −1.86, P = 0.06).

thumbnail image

Figure 1. Sources of information about rheumatoid arthritis used by respondents (n = 342).

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Associations with need for information.

Younger, more educated women had a greater need for information, but these associations did not occur in men (Table 2). Increasing numbers of DMARDs were associated with an increased need for information in men (Table 2). Men who reported DMARD adverse reactions (median ISPS 83.8) were more likely to seek information than those who had not (median ISPS 80.0; Z = −2.2, P = 0.03). Also among men, higher levels of fatigue were associated with higher levels of need for information (Table 2). Information seeking preference was not associated with level of RA knowledge (Table 2).

Table 2. Bivariate associations of information seeking preference scores*
 WomenMen
nrsPnrsP
  • *

    M-HAQ = Modified Health Assessment Questionnaire; VAS = visual analog scale; DMARD = disease-modifying antirheumatic drugs; RA = rheumatoid arthritis.

Age215−0.26< 0.001105−0.070.50
Education2150.180.01950.090.38
Disease duration207−0.030.641030.070.50
M-HAQ2140.010.951050.090.36
Pain VAS186−0.010.93800.150.20
Fatigue VAS1850.060.46800.290.01
Number of DMARDs1810.040.60870.280.01
DMARD treatment duration187−0.030.73920.110.29
RA knowledge score2120.110.111040.120.21

Level of desire for involvement in treatment decision making.

Information seeking preference scores (85.2 ± 8.6) were significantly higher (Z = −15.18, P < 0.001) than decision making preference scores (56.4 ± 13.6). It is striking that although the majority of respondents wished to make their own decisions about everyday health problems, very few wished to retain this control as their arthritis became worse (Table 3). Women showed a stronger preference for involvement in treatment decisions than men, although the difference was small (mean DMPS score for women was 58.1 ± 12.89 and for men was 53.4 ± 11.22; t = 2.9, P = 0.004).

Table 3. Percentage of respondents agreeing or strongly agreeing with decision-making preference scale statements
 Agree or strongly agree %
The important medical decisions should be made by the doctor, not by you (n = 333)74.8
You should go along with your doctor's advice even if you disagree with it (n = 331)52.9
When hospitalized, you should not be making decisions about your own care (n = 331)52.0
You should feel free to make decisions about everyday medical problems (n = 331)77.7
If you were sick, as your illness became worse you would want the doctor to take greater control (n = 332)79.5
You should decide how frequently you need a check-up (n = 332)41.5

Associations with desire for involvement in treatment decision making.

For both men and women, younger people and those with greater RA knowledge had greater desire for decision making involvement (Table 4). Additionally, in women there were positive associations of need for involvement in treatment decisions with education and increasing number of DMARDs (Table 4). Women who reported DMARD adverse reactions (mean DMPS 61.3) preferred more involvement than those who did not (mean DMPS 54.4; t = 3.26, P = 0.001). In men there were no other associations. Multivariate analysis showed that for men, age and knowledge did not predict decision making preferences (Table 5). For women, being younger was most likely to predict involvement in decision making, with additional effects from higher education level, increasing numbers of DMARDs taken, having had DMARD adverse effects, and greater knowledge about RA (Table 5).

Table 4. Bivariate associations of decision making preference scores*
 WomenMen
nrsPnrsP
  • *

    M-HAQ = modified Health Assessment Questionnaire; VAS = visual analog scale; DMARDs = disease-modifying antirheumatic drugs; RA = rheumatoid arthritis.

Age212−0.41< 0.001105−0.250.01
Education2050.31< 0.001960.160.13
Disease duration2010.080.241030.110.27
M-HAQ211−0.050.511050.130.18
Pain VAS184−0.020.77820.100.37
Fatigue VAS1830.080.29820.070.56
Number of DMARDs1750.24< 0.01880.150.17
DMARD treatment duration1820.060.45920.120.26
RA knowledge score2100.46< 0.0011040.280.01
Table 5. Hierarchical regression of decision-making preferences*
 nPartial R2PfModel R2
  • *

    DMARDs = disease-modifying antirheumatic drugs; VAS = visual analog scale; RA = rheumatoid arthritis.

Women     
 Age212−0.41< 0.00141.360.17
 Education2050.19< 0.0124.830.20
 Number of DMARDs1710.220.00116.420.23
 DMARD adverse effects1700.160.0313.520.25
 Fatigue VAS1520.030.6810.640.27
 RA knowledge1680.30<0.00111.540.33
Men     
 Age105−0.250.016.650.06
 RA knowledge1040.230.026.140.11

Correlation of the need for information with desire for involvement in treatment decision making.

For both men and women, there was no correlation between need for information and for involvement in treatment decisions (women: rs = 0.09, P = 0.19; men: rs = −0.06, P = 0.54).

DISCUSSION

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

The main finding of this study is that there is a very high level of need for information about RA and its treatment among people with RA attending our clinics. Only 1 previous study, carried out in the United States, used a validated tool to examine preference for disclosure of information among people with RA (8). Fraenkel et al (8) found that most of their 100 participants expressed a need for full disclosure of information. Clinically, and in the literature, there is a common fear of overloading patients with information and thus concern about limiting disclosure of therapeutic risks (13). Our findings add to the body of evidence that patients do want full disclosure (8, 13, 14). Despite this high need for information, most were reliant on receiving this from health staff and charitable sources (e.g., Arthritis Research Campaign booklets, which are widely available in our clinics), and fewer had sought information from other sources. Use of the Internet was low (14%) compared with previous studies. A survey of consecutive patients attending a rheumatology clinic found that 25% had obtained medical information from the Internet in the previous 12 months (15), and a study of patients with cancer found that up to 59% had sought information from the Internet (16). One explanation may be that younger age and being employed have been associated with use of the Internet (16) and many respondents in our study were older and retired.

Despite the fact that most participants in our study had longstanding disease, a sizable minority (20%) stated that they had not received enough information in response to the question “Do you feel that you have received enough information about your arthritis and its treatment?” Given that doctors and nurses were the most commonly cited information sources, it seems that we should be more proactive in providing information. Participants' RA knowledge scores were on average only moderate, a finding that supports their desire for more information. Just over half of the respondents were aware of the arthritis education program that our department runs, demonstrating that this could be promoted further. Interestingly, the level of need for information was similar in those who had and had not attended this program, although the former group had significantly higher RA knowledge scores.

We found that the need for information was similar for men and women with RA but that factors associated with this need differed between them. Younger women were more likely to prefer full information than older women, and better-educated women expressed a greater preference for information compared with less well-educated women. For men, a greater number of DMARDs taken and adverse experience with DMARDs were associated with a greater need for information. Our findings differ from those of Fraenkel et al (Table 6). However, their study used 4 of the 8 items in the ISPS and participants were of a uniform sociodemographic population (mainly well-educated women). Some other studies (Table 6) found a greater need for information among younger people and among the better educated, similar to our findings.

Table 6. Previous studies of patient need for information and decision making
Study (reference)Patients sampledAssociations with need for informationAssociations with need for decision making
Cassileth (5)256 with cancerYounger age Higher educational levelYounger age Higher educational level
Fraenkel (8)100 with rheumatoid arthritisFemale sex Employment (women) Higher educational level (men)Not investigated
Ende (9)312 primary careYounger age Higher educational levelYounger age Higher educational level
Karlson (13)30 with osteoarthritisFemale sexMen more likely to choose surgery earlier in disease
Krupat (17)909 outpatientsFemale sexFemale sex
  Younger ageYounger age
  Higher educational levelHigher educational level
  Higher incomeHigher income
Deber (18)300 undergoing angiographyYounger ageHigher educational level

We found that desire for involvement in treatment decision making was strikingly low compared with the desire for information. In addition, there was no association between information seeking and decision making preferences. These findings are similar to those of a US study of 312 primary care medical patients (9). Decision making preferences of patients with RA have not previously been investigated using a validated tool. The implication is that patients with RA want to be informed, but they do not necessarily want to make decisions. We found that as participants became sicker they wanted the doctor to take more control, but they wished to make decisions about everyday problems, supporting a self management approach to arthritis education programs. Most clinicians consider that they can judge patients' preferences by verbal and behavioral cues, but a study of 210 patients with hypertension found that clinicians underestimated patients' desire for information and overestimated patients' desire to make decisions (6). In that study, half of the patients did not want to play any role in decision making. Braddock et al examined the completeness with which doctors in primary care involved patients in clinical decisions (19). Of 1,057 encounters tape recorded, only 9% met definitions of completeness for shared decision making. Similar data are not available for rheumatologists.

We found that women expressed a greater preference for involvement in treatment decisions than did men, although the actual difference was small. For both sexes, preference for decision making was negatively associated with age but positively associated with RA knowledge. In women, although age and RA knowledge were the strongest predictors, there were also positive associations of desire for involvement in treatment decisions with education, increasing number of DMARDs taken, and DMARD adverse reactions. Others have also found that younger age and higher educational level are associated with a stronger preference to make decisions (Table 6). A Norwegian survey of 1,024 patients with RA used a single question to ascertain patients' perception of actual involvement with treatment and found that being young, well educated, and physically disabled were associated with a high level of involvement (2). The association that we found between need for involvement in decision making and knowledge of RA, but not between need for involvement in decision making and information seeking preference, suggests that education about RA can help empower patients by increasing their desire for decision making. This is of relevance because patient participation during consultations has been associated with improved level of function (20). People also want to make the decisions about everyday problems, emphasizing the need for effective education in self management approaches.

Another key finding of our study was that patient knowledge of RA is limited, as found in previous studies (21, 22). We found that older age, male sex, and lower level of formal education were associated with low RA knowledge scores. A recent study, validating a new patient knowledge questionnaire, also found that lower formal education level was associated with lower RA knowledge, but did not find an association with age (23). Given that patient education programs may be associated with improved health outcomes (24), these groups should actively be targeted for patient education interventions.

There are a number of caveats to our study. The fact that participants received the questionnaire from their source of care may have biased their answers in favor of reporting enthusiasm for information and for involvement in decision making. Second, although nonresponders did not differ in terms of age or sex from responders, no other information is available for this group. These individuals' needs may be very different. Third, we asked patients about their preferences at only one point in time, and preferences may change during the course of their disease. Additionally, it is hard to know whether associations with age are a cohort effect or a true evolution with aging. Finally, scores for the statement “You should be given information only when you ask for it” were significantly lower than scores for the other information seeking statements. It is likely that some respondents did not notice the word only in this statement. Although this scale has been previously validated (9) and this statement was used in a previous study of patients with RA (8), we feel that use of this statement should be reconsidered. In addition, a ceiling effect of the ISPS was apparent, and this may partly explain the lack of association between need for information and for involvement in decision making.

This study reaffirms that patients with RA want to be informed, but demonstrates that they do not necessarily want to make treatment decisions. Proactively helping to increase people's knowledge of RA may increase their desire to be involved in decision making. However, we should not forget that just as each patient has the right to make decisions, each patient also has the right to forego decision making.

Acknowledgements

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

We thank the participants in this survey and Drs M. Regan, G. Summers, S. O'Reilly, L. Badcock, R. A. Williams (Consultant Rheumatologists, Derbyshire Royal Infirmary) for their help with questionnaire design and content.

REFERENCES

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