The Research Proves It: For Better Health, Get Involved!

ACR Special Report


Roberta Horton, LCSW, ACSW 
Director, Department of Social Work Programs
Hospital for Special Surgery

When you have an acute illness, such as a bacterial infection, you don't have to do much to get well beyond taking the pills your doctor prescribes. But when you have a chronic disease, such as lupus, rheumatoid arthritis, or osteoarthritis, what you know and do carries great importance - beyond simple pill-taking. Several research studies at American College of Rheumatology scientific sessions showed how important your participation in your own care can be.

One study assessed whether patients with systemic lupus erythematosus who participated more actively during their doctor appointments had fewer subsequent problems with their lupus, less organ damage, less disability, and better outcomes than those who participated less actively.[1] [abstract below] They audiotaped the routine office visits of 79 women with their rheumatologists. Then "coders" scored the contents of the visits based on objective criteria, such as the number of questions the patients asked, whether their responses were assertive, and their expressions of concern, as well as the degree of patient-centered of communication by the physician (such as supportive and partnership-building statements). The scores were then compared to standardized measures of lupus activity, damage, and disability. For most of the patients, the scores were again compared to those measures of disease nearly five years later.

The researchers found that patients who had higher "active participation" scores had lower measures of permanent organ damage due to lupus. Based on their findings, the authors said a "woman who expressed nine questions, concerns, or assertions would be expected to have a Damage Index that was one-half that of a woman who expressed no such questions, concerns or assertions." Further, higher patient participation and higher patient-centered communication at the outset of the study tended to predict who would have a lower damage index at the five-year follow-up.

This study shows an association between active participation in medical visits and lesser organ damage - and the authors say that "involving patients more n their care may help decrease morbidity in SLE."

Indeed, some researchers want you to get even more involved - by helping decide what types of questions should be studied in lupus research. OMERACT stands for Outcome Measures in Rheumatoid Arthritis Clinical Trials - a project that has been going on for many years. It is seeking to define what researchers should measure as "success" when evaluating new arthritis treatments. What should they measure beyond laboratory tests? Are the current standardized measures of function and disability asking the right questions? For research to be effective, it should focus on questions important to both physicians and patients.

That's why some OMERACT researchers are now exploring how to get patients involved in helping physicians decide what kinds of questions research should be asking - as discussed in an ACR Study Group. For example, what's important to the patient may vary by age; younger people seem to be more worried about pain, while older ones are more worried about their ability to function on a daily basis. What's important may also vary with what type of arthritis you have. For example, people with lupus may be more concerned about exhausting fatigue, while people with rheumatoid arthritis may be more worried about potential disability. Further, what's important to patients may also be affected by their beliefs about illness - which may, in turn, be influenced by their cultural backgrounds. So researchers hope to get people with many different types of arthritis - and of a wide range of ages and cultural backgrounds - involved in planning future research.

If it's important to get patient input on planning research, just think how much more important it is for your physician to know what's important to you in planning your individual care!

But, the bad news is that all too many people with rheumatic disease - no matter what their level of education - know relatively little about their illness. Another study sought to explore the knowledge and understanding levels of people with rheumatoid arthritis, systemic lupus, and fibromyalgia.[2] [see abstract below] The researchers gave questionnaires about the nature of the disease, its cause, lab tests, medications, and likely outcomes to 60 patients in a rheumatologist's private practice. The results were woefully disappointing. All too many participants had basic misunderstandings about their disease - even though 72% or more had some college education.

While this research tells physicians and other arthritis health professionals that they need to do much more to help people understand their illness and treatment options, it should also say something important to people with rheumatic disease: ask questions, read books, pamphlets and other materials available from the Arthritis Foundation, Lupus Foundation and other respected resources. Gather information at websites from responsible academic organizations. We're glad you're here! We urge you to read and learn more - for your own better health.

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Abstract: Participatory Patient-Physician Communication and Morbidity in Systemic Lupus Erythematosus Category: 23 SLE-clinical aspects Michael M Ward, SaiGeetha Sundaramurthy, Debra Lotstein, Thomas Bush, C. Michael Neuwelt, Richard Street, Jr. Stanford University, Palo Alto, CA; Santa Clara Valley Medical Center, San Jose, CA; Alameda County Medical Center, Oakland, CA; Texas A&M University, College Station, TX

Presentation Number: 638

Objective: To determine if patients with systemic lupus erythematosus (SLE) who participate more actively in their medical encounters have less morbidity and better health outcomes.

Methods: We audiotaped a routine scheduled visit between 79 women with SLE and their rheumatologists as part of a cross-sectional study of determinants of morbidity. Audiotapes were coded using a reliable and validated coding scheme for 2 measures of participation: patient active participation (sum of number of questions asked, assertive responses, and expressions of concern by the patient) and physician patient-centered communication (sum of number of partnership building statements and supportive statements by the physician). These scores were examined for associations with 3 measures of morbidity: SLE activity by the Systemic Lupus Activity Measure (SLAM), permanent organ damage by the SLICC/ACR Damage Index, and functional disability by the Health Assessment Questionnaire (HAQ). The ability of the communication measures to predict future increases in the Damage Index was also assessed in 68 patients in whom the Damage Index was measured again 4.7 years after the initial evaluation.

Results: Patients (mean age 43.7 years; mean duration of SLE 9.3 years) had a median active participation score of 10 (range 1-60), and physicians (N = 11) had a median patient-centered communication score of 3 (range 0-17). The medians (ranges) of the morbidity measures were: SLAM 6 (0-23), Damage Index 1 (0-6), and HAQ 0.75 (0-2.625). In analyses that adjusted for patient age, ethnicity, education level, and duration of SLE, there were no associations between either patient active participation scores or physician patient-centered communication scores and either the SLAM or HAQ. However, patients with higher active participation scores had lower Damage Indexes, with each 1-point increase in active participation score associated with a 7% decrease in the Damage Index (odds ratio 0.93; 95% confidence interval (CI) 0.91, 0.94; P < .0001). Based on this association, a women who expressed 9 questions, concerns, or assertions would be expected to have a Damage Index that was one-half that of a women who expressed no questions, concerns, or assertions. During follow-up, 38 patients (56%) had an increase in the Damage Index. Higher patient participation scores (odds ratio 0.98; 95% CI 0.95, 1.01; P = .15) and higher physician patient-centered communication scores (odds ratio 0.95; 95% CI 0.88, 1.02; P = .13) at baseline tended to predict lower Damage Indexes in the future.

Conclusions: Patients with SLE who participated more actively in their medical visits had less permanent organ damage and tended to develop less organ damage over time. Involving patients more in their care may help decrease morbidity in SLE.


Abstract: Rheumatic Disease Knowledge Gaps in a Large Rheumatology Private Patricia A MacDonald, Susan Shott, Robert S Katz
Rush University Medical School, Chicago, IL

Presentation Number: 1046

Purpose: We attempted to evaluate the depth of knowledge and understanding in patients with Rheumatoid Arthritis (RA), Systemic Lupus Erythematosus (SLE), and Fibromyalgia Syndrome (FMS) to determine the effectiveness of current educational programs.

Method: Questionnaires were administered to 60 patients selected at random, meeting ACR criteria. Patients were age, sex and education matched. Questions were true/false, correct answers were validated by the staff. Questions addressed the nature of the disease, underlying causes, laboratory tests, medications and likely outcomes.

Results: Of the 60 questionnaires returned, 14 with RA, 10 SLE, and 25 patients with FMS, 11 questionnaires were returned with missing data and were not evaluated. 87% of RA patients incorrectly indicated that RA can be associated with both long periods of active disease between long periods of remission. 67% answered that RA is diagnosed mainly based on a positive blood test. 47% indicated that RA is a joint disease, and that other organs are not affected. Of those answered incorrectly: 73% of the SLE patients did not know that women with SLE are more likely to lose a fetus, and 73% did not understand that there is a high occurrence of SLE among both members of a pair of identical twins and, therefore, a strong genetic component. 67% of SLE patients thought that they could still have normal blood tests. 64% of the FMS patients indicated incorrectly that FMS is an auto-immune disease, and 64% did not think that numbness and tingling in the arms and legs can occur in FMS. 48% of FMS patients thought that FMS usually gets progressively worse. Finally 40% of FMS patients believe that FMS is caused by a virus, 40% think that FMS is treated with corticosteroids and immunosuppressant drugs, and 40% also believe that carpal tunnel syndrome is part of the disease. Patient demographics were comparable with 73% of SLE, 72% RA and 76% of FMS patients with some college education.

Conclusion: In this group of rheumatic disease patients, approximately 3/4 of whom had some college education, there were important knowledge gaps. Community based organizations, such as the Arthritis Foundation, as well as physician/nurses need to be aware of specific knowledge gaps among their patients so that they can implement proper educational strategies.


1.  Ward MM, Sundaramurthy S, Lotstein D, Bush T, Neuwelt CM, Street R. Participatory patient-physician communication and morbidity in systemic lupus erythematosus. Arthritis Rheum. 2002 Sep;46(9):S263. Abstract # 638.

2.  MacDonald PA, Shott S, Katz RS. Rheumatic Disease Knowledge Gaps in a Large Rheumatology Private Practice. Arthritis Rheum. 2002 Sep;46(9):S403. Abstract # 1046.

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