Background: Patients who make high-quality medical decisions are more likely to have better health outcomes. One of the central components to a high-quality decision is the well-informed manner in which it is made. However, there has been little research studying patient behaviors regarding how they seek information about treatments for rheumatoid arthritis (RA).
Methods: We conducted a pilot study surveying beneficiaries of a health plan who had 2 or more visits coded for RA. Of 799 invited subjects, 101 (13%) completed interviews. Participants answered a questionnaire regarding sources of RA treatment information and their usefulness, sociodemographic items, and scales regarding their attitudes toward providers and medicines. Outcomes of interest included the average number of sources described (range, 0-10) and the usefulness for each source (1 "not useful" and 4 "extremely useful").
Results: Methotrexate was the most widely used medication reported. The mean (SD) number of information sources used was 5.0 (2.1). Participants rated the information they used with a mean (SD) score of 2.8 (0.7). We found no strong patient correlates of these outcomes when compared with the aforementioned domains. Of the 98% of the total sample who referred to a rheumatologist for information, 87% rated the source as extremely useful. The Internet was the most frequently used nonprovider source, with 63% of subjects reporting use, and a mean (SD) usefulness rating of 3.0 (1.03).
Conclusions: In this pilot study, participants used many sources of information regarding treatment decisions for RA. Ninety-eight percent of the participants used rheumatologists as a source and found them extremely useful. Of the nonprovider sources, the Internet was most common, and 40% found it very useful.
Patients used many sources of information including the internet and rated the sources. Implications of patient's opinions need study.
From the Divisions of *Rheumatology, Immunology, and Allergy and †Pharmacoepidemiology, Brigham and Women's Hospital, Boston, MA; and ‡Horizon Blue Cross Blue Shield of New Jersey, Newark, NJ.
This study was supported by the Arthritis Foundation.
Dr Solomon also receives salary support from the National Institutes of Health (NIH) and Agency for Healthcare Research and Quality through research grants. He has received salary support from research contracts with Amgen and Abbott and has received support for an educational course from Bristol Myers Squibb for an educational course. He also serves in unpaid roles on 2 trials for Pfizer. Dr Iversen also receives funding from the NIH through research grants. The Arthritis Foundation supported this research but had no further role in the conduct or write up of the study.
Correspondence: Daniel H. Solomon, MD, MPH, Division of Rheumatology, Immunology, and Allergy, Brigham and Women's Hospital, 75 Francis St, PBB-B3, Boston, MA 02115. E-mail: firstname.lastname@example.org.
Studies show that patients who participate in their care are more likely to comply with treatment, have better satisfaction with care, and show the potential for improvements in health outcomes.1-3 One component of patient participation is the method by which treatment decisions are made and the information sources they use. A well-informed patient is much more likely to make a high-quality decision.4,5 Different aspects of what makes a patient with rheumatoid arthritis (RA) well informed have been studied, specifically the need and preference for information, involvement in decision making,6,7 and knowledge of RA.8
One 2005 study conducted in the United Kingdom found that there was a high level of need for information among patients with RA.6 Patients reported "physicians and nurses" as well as "charity" to be the most highly used sources of information with "Internet" and "other" being the least used sources. Authors defined "charity" as organizations such as Arthritis Care and the Arthritis Research Campaign; however, they do not define what "other" sources are. Other authors exploring patient preference and involvement in decisions have shown that a patient's preference for information directly correlates with their knowledge of RA.7,9 However, there has been little research regarding patients' use of different sources of information for treatment decision making and how they rate these sources.
The aims of the present study were to (1) identify sources of information used by patients with RA, (2) assess how patients rate each type of information in "usefulness," and (3) examine patient correlates of information sources and ratings.
We conducted a pilot survey of subjects with RA participating in a large health plan. Eligible participants included beneficiaries of Horizon Blue Cross Blue Shield of New Jersey during 2009 to 2010, who were older than 18 years and who had 2 or more visits at least 1 week apart coded with a diagnosis of RA (International Classification of Diseases, Ninth Revision, 714.x). Letters were mailed in batches of 100 to 200 to potential participants. Participants were instructed to send back their letters in a prestamped envelope and to check a box indicating whether they had interest in the study. Potential subjects were contacted by telephone to follow up if no letter was returned after several weeks. Interested participants chose a time that was convenient for them to be contacted. A trained research assistant then called them at the desired time to conduct the survey. Before the survey began, the subject was asked for verbal consent and was also mailed a consent form to sign after completion. This study was approved by the Partners Healthcare Institutional Review Board.
Participants answered a telephone survey consisting of sociodemographic items, characteristics of their RA, sources of RA treatment information, and scales. The sources of RA treatment information assessed included providers, nonproviders, and data sources. We assessed for 4 provider sources of information-primary care physician (PCP), rheumatologist, nurse practitioner or physician's assistant, and occupational or physical therapist. Nonprovider sources included the Arthritis Foundation, books or magazines, friends or family, advertisements, health insurance, and the World Wide Web. After asking participants to select from our list of sources, we asked them if they had used any other sources, and if so, which ones. Participants were asked to rate the usefulness of each source from 1 (not useful) to 4 (extremely useful).
Self-efficacy was measured using the Arthritis Self-efficacy Scale of Lorig et al.,10 a 20-question scale consisting of 3 subscales including "pain," "function," and "other symptom." For our purposes, we chose to use the 6-item "other symptom" subscale, which assesses the subject's level of certainty that they can control aspects of their arthritis such as fatigue and pain.
The Rheumatoid Arthritis Disease Activity Index (RADAI) was used to assess disease activity and severity.11-14 The RADAI asks respondents about global disease activity during the last 6 months, current disease activity in swollen and tender joints, arthritis pain, duration of morning stiffness, and tender joint count.
Beliefs in medications were assessed using the "concerns" subscale of the Beliefs about Medicines Questionnaire.15,16 The "concerns" subscale consists of 5 items designed to gather information about subject concerns based on beliefs about dependence, long-term toxicity, and disruptive effects of mediation.
Decision making regarding the most recent decision the subject had made (to take or not to take medications) was measured using the Decision Regret Scale.17 This scale is composed of 5 items that are intended to measure the level of satisfaction with decision and the outcome and level of knowledge about the decision
Trust was measured using the Trust in Physician Scale,18,19 which consists of 11 items that ask about the subject's relationship with his or her physician. Subjects were told to use their rheumatologist as a reference point when answering questions, and if they did not see a rheumatologist, they were told to use their PCP. A 12th item was added to the scale, "My physician always listens to me."
Function was measured using the Modified Health Assessment Questionnaire (MHAQ).20 The MHAQ looks at 8 factors related to function including degree of difficulty, satisfaction with information, change in function, and perceived need for help with each activity.
The Domain-specific Risk-Attitude Scale was used to measure subject's perception and attitude toward risk.21 A total of 4 items were chosen from this 40-item scale. The 4 items used included health-specific risks such as seatbelt and helmet usage.
One item on the questionnaire addressed social norms,22 and there were 3 items that addressed social supports.23
Participants' illness perceptions were assessed using the Brief Illness Perception Questionnaire.9 The Brief Illness Perception Questionnaire is an 8-item questionnaire designed to elicit subjects' perceptions and attitudes toward their illnesses.
Descriptive statistics were used to characterize the sample. The sources of information (e.g., provider and nonprovider) were considered the outcome of interest. We considered all 10 potential sources assessed-4 provider and 6 nonprovider-and created a simple count of sources (range, 0-10) and used descriptive statistics to describe the sources of information. We also calculated the average usefulness of the sources consulted (range, 1-4). We then examined whether any of the subject characteristics or scales correlated with the outcomes (e.g., number of sources and usefulness), using a Pearson correlation coefficient. We also compared the outcomes by baseline participant characteristics (see Supplemental Table, Supplemental Digital Content, http://links.lww.com/RHU/A12). All analyses were conducted using SAS (Cary, NC).
Our search yielded 3864 potentially eligible participants. Of these, 263 were permanent opt-outs according to their health plan, meaning they chose to be placed on a no-contact list. We sent invitation letters to 799 of the remaining participants in batches of 100 to 200 until we reached a desired level of participation. We received 77 response letters stating these participants had no interest in the study, leaving 722 potential participants to be contacted via telephone to assess further interest. Of those 722 participants, 599 people either could not be reached (n = 302) or refused to participate when contacted (n = 297) by telephone. Twenty-two people were found to be noneligible after the telephone interview because they could not confirm the diagnosis of RA. In the end, 101 interviews were completed. These 101 were similar in age (mean age, 59 years) and sex (75% were women) to the 297 who refused participation (mean age, 60 years) and sex (73% were women).
Most participants (96%) reported at least 2 years of disease and had a mean age of 59 years (Table 1). Most respondents described their race/ethnicity as white, non-Hispanic (89%) and 75% were women. The most commonly used medication was methotrexate, with 60% of subjects stating that they were using the drug currently and 25% stating they had used the drug in the past.
A mean (SD) score of 64.1 (19.8) on the Arthritis Self-efficacy Scale was reported, showing participants to have medium perceptions of self-efficacy. Participants had a mean (SD) score of 3.7 (2.0) on the RADAI; a scale from 0 to 10, with higher scores indicating higher disease activity. Participants also scored in the lower range on the Beliefs about Medicines Questionnaire, with a mean (SD) of 12.3 (5.2), of a 5 to 25 range. Participants scored on the low end of the Decision Regret Scale as well, with a mean (SD) score of 11.8 (16.6) of 100. Lower scores indicated less regret. Participants showed a medium amount of trust in their physicians with a mean score of 57.3 (7.7). Mean scores on the MHAQ were 0.5 (0.6), indicating more functional ability. Participants gave a mean score of 1.5 (0.6) on the risk attitude scale, which showed inclinations toward less risky behaviors. Participants scored high on the social norms item and medium on the social supports scale with a mean (SD) of 6.2 (1.4) of a possible 7 and a mean (SD) of 10.6 (2.0) of a possible 14, respectively. Higher scores indicate more social supports. Lastly, subjects scored somewhat high on the Brief Illness Perception Questionnaire, with a mean score of 50.0 (6.7) on a 0 to 80 range. Higher scores indicate a more threatening view of illness.
Of the "provider" sources described, the rheumatologist was the most highly used (98%), with PCPs the second most used (75%). Most participants (88%) gave their rheumatologist a score of 4 for usefulness on a 1 to 4 scale, with 4 being extremely useful and 1 being not useful (Table 2). Of participants, 43% gave their PCP a score of 4. Both nurse practitioners/physician's assistants and physical/occupational therapists were only used by 20% of subjects. Of the "nonprovider" sources, the Internet was the most popular, with 62% of participants attesting to use. Of those people, 73% rated the Internet as a 3 or 4 on the 1 to 4 scale. The second most highly used source was books and pamphlets, with 59% of participants claiming use. Of that 59%, 34% rated books and pamphlets as a 3 or 4 (Table 3). The most widely cited resource from this category was the Arthritis Foundation magazine, Arthritis Today. Subjects also cited specific drug pamphlets when asked about which books or pamphlets they had used. The Arthritis Foundation's magazines and pamphlets and friends/family were each used by nearly half (49% and 48%, respectively) of our sample. Advertisements (38%) and health plans (31%) were the least used source of the nonprovider's category. In addition, most people who used advertisements or health plans gave them a score of 1 or 2. Nearly half (47%) of the sample who attested to using advertisements for information stated the advertisements were not useful at all.
Most participants used between 3 and 6 sources (69%). Participants rated provider sources the most useful, with a mean score of 3.33 of 4. Nonprovider sources received a score of 2.48, and overall provider plus nonprovider sources were rated 2.85.
None of the correlations were very strong with a maximum significant correlation coefficient of 0.22 (Tables 4 and 5). Positive correlations were noted between number of sources and social support (r = 0.20, P = 0.04) as well as number of sources and beliefs in medicines (r = 0.22, P = 0.03). Neither of these variables were significantly correlated with subjects' ratings of usefulness. However, there was a positive relationship between trust in physician and usefulness of sources (r = 0.21, P = 0.03). We also compared the outcomes by baseline participant characteristics and found no important differences (Table 6).
Members of a New Jersey-based health plan showing claims-based evidence of RA were invited to participate in a pilot telephone survey regarding factors related to treatment information. Participants were similar to other RA groups about self-efficacy, beliefs in medications, and trust in physician.2,16,19 Subjects used many sources to meet their informational needs. Most people used between 3 and 6 sources. Rheumatologists, PCPs, Internet, and books, pamphlets, and magazines were the top 4 sources cited. Rheumatologists were rated the most useful source overall.
The Internet was also highly used. This finding is similar to other studies on Internet use for health information.24 Use of the Internet as a source of health information is still a novel practice that, coupled with the use of other sources, holds the potential to give patients better understanding of their RA and its treatments, therefore giving them the ability to make better, quality health decisions. There is, however, just as much unreliable information as there is quality information on the Internet, and this is likely reflected in the relatively low usefulness scores given.25-27
Subjects relied less on nurse practitioners/physician's assistants and physical/occupational therapists for information than on any other source. It is difficult to say why these sources were used infrequently because subjects were from different areas seeking treatment at different clinics. These providers seem underused.
Positive correlations were observed between outcomes of interest (number of sources used and rating of usefulness for each source) and several of the scales; however, these relationships were not strong (Table 5). One possibility as to why these were not strong is most subjects use many sources. The number of sources showed a positive relationship with social supports as well as beliefs in medications. The idea that people with strong social supports use more sources for information is almost expected. Not only were friends and family noted as an information source, these people may also play a role in providing ideas for sources and urging subjects to use more sources. In addition to stronger social supports, participants using more sources of information also had higher beliefs in medications. In future work, it would be interesting to explore if stronger beliefs in medication lead to use of more sources or if the use of more sources leads to stronger beliefs. Our cross-sectional survey cannot discern temporal relationships. Another positive correlation was found between usefulness of sources and trust in physician. The higher the trust level in PCP or rheumatologist, the higher usefulness scores tended to be.
Limitations of this study include the fact that all participants were from a relatively small sample from 1 health plan in New Jersey. Most participants lived in the mid Atlantic region of the United States. We did not collect in-depth information on any given information sources because this was a relatively brief survey. For example, we did not ask what Web sites were the most helpful or delved into the qualities of a useful physician. As well, some of the questionnaires that we used had not undergone psychometric testing in an RA cohort previously.
We conducted a pilot survey with patients with RA and found that people rely on their physicians, rheumatologists in particular, as well as the Internet for information about their disease. Participants rated rheumatologists as being the most useful source of information overall. Further studies on particular sources of information and patient's learning habits would be useful. Focus groups with RA patients regarding ways to better serve their informational needs might also be helpful. Because the Internet was cited as such a highly used and useful source of information, it would be prudent to figure out ways in which to educate people on discerning the difference between credible sites promoting scientific research and sites containing implausible hearsay.
By learning more about patient information source preferences (mode, amount, and usefulness), we may be able to better tailor treatment information to patients' particular learning styles to produce better health outcomes, greater compliance with treatment, and greater satisfaction with care. If patients are provided with quality information that they find helpful, they are more likely to engage in learning about their treatment options and make better decisions regarding their care. Two ideas worth testing for improving patient's use of information include a more standardized approach to connecting patients with trusted sources of information, such as the Arthritis Foundation, and programs that involve health educators reaching out to patients in clinic, via telephone, or e-mail. These programs can be easily pilot-tested and then disseminated through health plans. We view the results of this pilot as a "road map" for improving RA treatment information.
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disease-modifying antirheumatic drug; decision making; rheumatoid arthritis
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