Importance of Patient Education

Introduction

Since the 2006 guidelines on gout management, the European League Against Rheumatism (EULAR) has included “patient education and appropriate lifestyle advice” as the foundation of gout management in their evidence-based recommendations, including in the newest (2016) guidelines. When adherence to these guidelines was tested in UK primary care practices, only 41% of gout patients could recall receiving advice about alcohol consumption, 25% about weight loss, 29% about appropriate diet and only 18% received any educational materials from their health providers.

In 2012, the American College of Rheumatology published their Guidelines for the Management of Gout with a top-level emphasis on the need for better patient education, which was maintained in the 2020 guidelines (The 2020 American College of Rheumatology Guidelines for the Management of Gout). In a follow-up study of primary care physicians (both family medicine and internists) after the release of the 2012 ACR guidelines, there was substantial nonadherence to the recommendations. While three quarters of these physicians counselled their patients to reduce the intake of beef, organ meats and beer, only half of the physicians offered advice on the optimal medical care including dose titration of urate-lowering therapy (ULT). Only 16% reportedly used the standard treatment recommendation of initial low-dose xanthine oxidase inhibitor with gradual dose escalation to a target serum urate (SUA) of ≤6.0 mg/dL while offering anti-inflammatory prophylaxis to treat ULT-related flares for at least 6 months.

In addition to poor physician knowledge base and nonadherence with expert guidelines, another unmet mandate from the ACR and EULAR guidelines is the emphasis on patient education. Murphy-Bielicki and Schumacher demonstrated that an intense educational program conducted by a trained nurse is more effective at decreasing frequency of flares, lowering serum urate levels and increasing the level of patient gout-specific knowledge than patients taught only by a fellow with a pamphlet. In a study from the UK, a predominantly nurse-led intervention of gout patients that included disease education, lifestyle advice and a full description of the purpose and need for various gout medications resulted in a >90% adherence to treatment recommendations and success in attaining the targeted serum uric acid level. A subsequent randomized clinical trial established that a nurse-led comprehensive treatment plan which included individualized patient education led to a target serum urate level of <6 mg/dL in a significantly greater proportion of patients compared to physician-led “usual care.”

The transfer of knowledge from health care provider to patients by itself may not be enough to achieve behavioral and health outcomes in all subjects with gout but should be fundamental to our efforts to improve patient adherence. The behaviors that can affect the health status of gout patients include exercise, joint protection, diet and alcohol modification and adherence to prescribed medications (Table 10-1).

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Educational Barriers to the Optimal Management of Gout

The management of gout continues to be suboptimal to this date in both the specialty (rheumatology) and primary care setting, despite the availability of an adequate list of newer and extant set therapies to treat this condition. The barriers to the proper use of these therapeutics (or pharmacologic choices) reside in patients beliefs and misconceptions about gout, the health provider’s understanding of the pathophysiology of the disease leading to an underestimation of the systemic impacts of gout, their misunderstandings of gout as a chronic disease and discomfort with the medications used to treat it. In face-to-face interviews with both gout patients and physicians, a group from the UK identified multiple obstacles to optimal care that need to be addressed if we are to make progress in treating this condition (Table 10-2). Another study pointed out that the language we use to describe gout contains a lot of ambiguity and imprecision and may undercut both patient and physician understanding of hyperuricemia and gout. Furthermore, although visual images enhance patient understanding of gout, a survey of images from patient-education materials from seven English-speaking countries revealed that almost a third of images (29%) do not show specific information about gout and urate-lowering medications and serum urate targets are rarely represented in images (<1% and 2%, respectively).

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Practical Points About Patient Education and Simplified Informational Materials That Can Be Given to Gout Patients

A major goal of patient education in gout is to foster a cooperative relationship between the physician and patient. Educational programs aimed towards increasing disease-specific knowledge are expected to translate into behavioral changes in lifestyle management including exercise, diet/alcohol modification and adherence with medications and the overall treatment plan. There is a substantial body of evidence to support the use of educational booklets to improve knowledge and compliance. One study found that the use of images, including CT scans and medical illustrations, also significantly improves patient understanding, with personal scans deemed more helpful than generic scans or illustrations and more interesting than illustrations.

The internet offers a large amount of information on gout of markedly varying quality (Figure 10-1). Many commercial sites and some touting unproven therapies do not contain evidence-based information and may ultimately be harmful to patients. Identify the nonprofit, authoritative Web sites for gout patients (Table 10-3) and have them stay clear of sites with inaccurate and potentially harmful information. One useful site is MyGoutCare, an online educational tool that includes patient-oriented content about the natural history of gout, management modalities and treatment goals and simulates a typical gout patient journey; in a pilot study in 50 patients, use of MyGoutCare significantly improved gout knowledge scores on a validated 10-item questionnaire.

There are potentially large health care cost savings and quality of care and QOL improvements associated with patient education efforts in the health care provider’s office. We should all be optimizing this approach for gout since patient adherence is much lower in gout than in many other common chronic health care conditions (Table 10-4); this is indicative of a systematic deficiency of patient education particular to gout.

Explaining gout and its treatments in terms all patients can understand is very helpful. Table 10-5 is one approach and this and other information that can be copied or transcribed and handed to patients are formatted in material that follows. For example, Table 10-6 is a simplified information sheet that can be handed to patients to help manage their expectations regarding diet in the treatment of gout.

The major problem of perception of ULT-induced gout flare impacts negatively on patient adherence (Table 10-7). At least half of gout patients starting ULT are nonadherent or discontinue therapy in the first year. This problem is likely related in part to ULT-induced gout flares in early ULT therapy. Importantly, Table 10-8 provides a model for information to give patients about gout flares on ULT that can help them adhere to the therapeutic program.

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Take-Away Messages

• Physicians must meet treatment objectives in changing gout clinical landscape filled with more cases and more difficult disease.
• Physicians can do much better in educating patients to get with and stay with the program:
  • More accurate diagnosis using joint aspiration and advanced imaging where appropriate
  • Diet and alcohol temperance to reduce flares and help with urate lowering
  • Adherence to ULT
  • Understanding and adhering with flare prophylaxis
  • Managing expectations, understanding long-term outcome goals.
• Better outcomes in gout go hand in hand with better physician-patient communication, which should be started early in gout.
• Teaching patients that ULT is eventually “curative” in gout is essential and promotes optimal adherence to treatment.