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- PATIENTS AND METHODS
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.
- Top of page
- PATIENTS AND METHODS
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 sampled||Associations with need for information||Associations with need for decision making|
|Cassileth (5)||256 with cancer||Younger age Higher educational level||Younger age Higher educational level|
|Fraenkel (8)||100 with rheumatoid arthritis||Female sex Employment (women) Higher educational level (men)||Not investigated|
|Ende (9)||312 primary care||Younger age Higher educational level||Younger age Higher educational level|
|Karlson (13)||30 with osteoarthritis||Female sex||Men more likely to choose surgery earlier in disease|
|Krupat (17)||909 outpatients||Female sex||Female sex|
| || ||Younger age||Younger age|
| || ||Higher educational level||Higher educational level|
| || ||Higher income||Higher income|
|Deber (18)||300 undergoing angiography||Younger age||Higher 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.