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Patient Education: How Can We Improve It and Evaluate the Effects?

Schumacher, H. Ralph MD

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Journal of Clinical Rheumatology: August 2011 - Volume 17 - Issue 5 - p 229-230
doi: 10.1097/RHU.0b013e31822d9a51
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This issue of the JCR contains 3 original articles addressing aspects related to public and patient education. These started a series of thoughts about how all types of education of our patients are done, if education can be improved, and importantly how to evaluate its various impacts.

The first article by a group of rheumatologists1 identified the Internet as an increasingly important way that rheumatoid patients who are beneficiaries of a health plan look for information about their disease. Forty percent found the Internet very useful but did not report what aspects of the very diverse information on the Internet that were used. The most frequently used and most trusted resource reported was the patient's rheumatologist. How to interpret this from one study is not clear. Was this spoken information or printed information that was handed out? We would certainly hope that all rheumatologists' recommendations are valuable and are the most likely of all sources to be influenced by evidence of what is best for each patient.

Interestingly, neither newspaper nor TV was among the most commonly listed sources. Two very recent issues of my wife's subscription to the Wall Street Journal (on July 6 and 8) caught my attention. These pointed out for anyone who read these that widely ballyhooed new treatments may not be more effective or even less safe than previous approaches. Angioplasties using coronary artery stents were deemed to have been used inappropriately (12%) and questionably (38%) in stable or asymptomatic patients. The same article addressed a study in which spine surgeons who had received millions of dollars from a maker of a bone growth protein failed to report serious complications with the use. Another article reported that metal-on-metal hip joint implants were recalled for several concerns only after about 93,000 had been implanted worldwide. Earlier, the Wall Street Journal had noted the delay in reporting the limited value of nesiritide for heart failure. Newspapers obviously also report positive advances in medicine. It would really be of interest to know more about the impact of newspaper reporting or even online editions of newspapers.

Recent advertisements related to our patients encourage use of biologic agents for rheumatoid arthritis (RA) and other rheumatic diseases. We rheumatologists also have encouraged the clear value of very early treatment of RA even using more sensitive American College of Rheumatology-European League Against Rheumatism new criteria for early RA. I am not aware how much early use of various measures is being highly advertised to the public, but there are certainly many TV, radio, magazine, and newspaper advertisement on new, generally much more expensive agents, for many diseases including rheumatic diseases. Direct-to-patient advertising is presumably seen by industry to lead to more use of the advertised product. I have been dismayed that most TV advertisements for medications do provide a list of adverse events including even the risk of death, but do so while showing pleasant images totally unrelated to the risks. Industry may have well evaluated the impacts of such ads, but I am not aware of any published study on influences on patient behavior of such direct-to-patient advertising. As often noted, early adoption of new agents or new indications may not always be ideal in this environment of out-of-control health costs. The biologics have provided dramatic and important benefits for many rheumatic disease patients, but have less costly alternatives been underappreciated? Early use of even oral disease-modifying antirheumatic drugs such as methotrexate can be very effective.2 Garneau et al.1 noted that advertisements in general were used by 38% of the patients. Forty-seven percent found them not useful at all, but in others, they may well have had some impact.

The second article by Hirsh et al.3 follows up on another earlier JCR article4 by showing that low health literacy was independently associated with objective functional impairment in a group of English-speaking patients with RA in a public health hospital in Denver. Seventeen percent of patients had a Rapid Estimate of Adult Literacy in Medicine literacy score of grade 6 or less. Many educators suggest that this reading level should be targeted, but other patients could understand and likely benefit from more complex material. Is there a risk of oversimplifying as well as a risk of not providing appropriate information to our most vulnerable patients?

The third article5 directed at developing easy-to-read patient questionnaires about gout has reviewed reading (literacy) levels of 2 gout patient education materials from the American College of Rheumatology and Gout and Uric Acid Education Society, to both of which I had contributed. Using Flesch-Kincaid grade levels, built into Microsoft Word, literacy grade levels were 5.4 and 8.8, respectively. How well such calculated levels actually relate to usefulness is not known. I have found few studies evaluating the impact of such educational material on actual patient outcomes and have been hoping to see such studies funded. Hirsh et al.3 reported that a single-item health literacy screen was predictive of a lower Multidimensional Health Assessment Questionnaire score, but health literacy scores did not associate with DAS28 (Disease Activity Score using 28 joint counts) scores. Back in 1984, we had compared verbal instructions by rheumatologists about gout with a more aggressive education and telephone follow-up by a clinic registered nurse in a small study.6 The patients followed up by the nurse achieved better drug compliance and serum urate levels and had less gouty flares. Such outcomes including compliance with drugs and diets, urate levels achieved, resolution of tophi, function, and flares as well as patient knowledge could be important to compare after various educational efforts for gout.

With the interest exemplified by these JCR articles, let's see if we can design and find funding for studies that finally can address objective impacts, not only of material that we have developed, but also other materials to which our patients are exposed. Shouldn't we also be involving patients in developing and assessing material that we develop? Meanwhile, we should recognize some concerns and limitations of the variety of materials to which our patients may be exposed. Lastly, these studies are all from the United States. I would be interested to hear about patient education in other countries.


1. Garneau K, Iverson M, Jan S, et al. Rheumatoid arthritis decision making: many information sources but not all rated as useful. J Clin Rheumatol. 2011;17:>231-235.>
2. Bosello S, Fedele AL, Peluso G, et al. Very early rheumatoid arthritis is the major predictor of major outcomes: clinical ACR remission and radiographic non-progression. Ann Rheum Dis. 2011;70:1292-1295.
3. Hirsh J, Boyle DJ, Collier DH, et al. Limited health literacy is a common finding in a public health hospital's Rheumatology clinic and is predictive of disease severity. J Clin Rheumatol. 2011;17:236-241.
4. Swearingen CJ, McCollum L, Daltroy LH, et al. Screening for low literacy in a Rheumatology setting: More than 10% of the patients cannot read "cartilage," "diagnosis," "rheumatologists," or "symptom." J Clin Rheumatol. 2010;16:359-364.
5. Zhang LY, Schumacher HR, Su HH, et al. Development and evaluation of a survey of gout patients concerning their knowledge about gout. J Clin Rheumatol. 2011;17:242-248.
6. Murphy-Bielicki B, Schumacher HR. How does patient education affect gout? Clin Rheumatol Pract. 1984;2:77-80.

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