Insights into The Myths About Gout & the Barriers to Optimal Care
WASHINGTON, D.C.—Gout is poorly managed, and not just by a bit. Adherence to drug treatment for gout is the outlier among many of the top chronic medical conditions. Data show that gout has the lowest adherence rates at 36.8% compared with other chronic conditions, such as 72.3% for hypertension and 51.2% for osteoporosis.1
In a session at ACR Convergence, Of Kings and Men: Education and Remission in Gout, N. Lawrence Edwards, MD, professor of medicine, Division of Rheumatology and Clinical Immunology at the University of Florida, Gainesville, presented these low treatment adherence numbers, noting that clinicians have long known and not fully understood them.
Using a flow chart, he illustrated the magnitude of the problem. Of 21.1 million people in the U.S. with gout, only 7.6 million received a uric lowering therapy. Of those patients, 90% (6.7 million) were inadequately treated, with only about 10% (0.91 million) adequately treated.
Why are most patients with gout inadequately treated? Dr. Edwards pointed to two main problems: poor patient adherence to treatment and poor physician performance. Both problems, he suggested, reflect a need for better education around gout that includes addressing the myths and misconceptions about the disease and barriers to optimal gout management.
The Challenges
For patients, myths about gout include its perception, which can be embarrassing. Such perceptions include believing gout is self-inflicted (e.g., caused by an overindulgence in food and alcohol) or always linked to obesity. Or the myths may simply create a limited perception of the disease as a benign, intermittent condition with few—if any—consequences or occurring only if a person has joint pain. Also, that gout occurs only in men.
Along with misperceptions about the disease, several barriers impede optimal management, including a poor understanding of the disease mechanisms, a poor understanding of the treatment plan, poor health literacy, financial problems and fears of medications.
Rheumatologists also have biases that interfere with optimal gout management, some of which they share with their patients. These may include inherent biases against the disease, a poor understanding of the pathogenesis of gout and viewing the disease as benign. Additionally, rheumatologists may overemphasize dietary and lifestyle suggestions, restrict allopurinol doses to a very narrow therapeutic range and implement poor clinical follow-up and lab testing. They may also be a loyalist to treat-to-avoid symptoms recommendations proposed by the American College of Physicians (ACP) and unfamiliar with treat-to-target expert recommendations from EULAR and the ACR, among others.
Education & Follow-Up
Given all these barriers, Dr. Edwards said it is unsurprising that patient education on gout has failed. A South Korean study showed that treatment adherence steadily dropped off over 60 months for newly diagnosed patients with gout initiating treatment with allopurinol or febuxostat, despite an intensive patient education program. A follow-up survey found that poor health literacy about the disease and the medications were by far the greatest reasons given for lack of treatment adherence. Instructive from this study is that implementing a rigorous education program is not sufficient to improve treatment adherence.2
Regular follow-up of patients is needed to reinforce information about the disease and its management. This approach was investigated by a study conducted in Nottingham involving a nurse-led intervention designed to educate patients about gout with regular follow-ups after treatment initiation.3 In the trial, during the first clinical visit after a patient was diagnosed with gout by a rheumatologist, a nurse followed up with a detailed education on the causes of gout, risk factors and clinical consequences. They addressed such strategies for urate lowering as weight loss, urate lowering therapy with or without prophylaxis and why there is a serum urate target of <6.0 mg/dL. Additionally, the nurse checked patient’s uric acid levels, initiated the urate lowering therapy and set up a return telemedicine visit for one month.
After one month, the nurse checked on the patient’s uric acid levels and adherence to urate lowering therapy. They also found out if the patient had any questions about educational aspects, suggested dose escalation if needed and set up another telemedicine visit for one month. This cycle continued until the patient achieved the treatment target, at which they followed up every three months up to a year and then the nurse referred patients to their primary care doctor.
The Results
The program showed excellent results, said Dr. Edwards, with 92% of patients at <6.0 mg/dL target and 85% at <5 mg/dL at 12 months. At the five-year follow-up, under the care of their primary physician, no drop off in the percentage of patients who achieved their target was found, with 90.7% of patients at <6.0 mg/dL and 85.3% at <5 mg/dL.
Dr. Edwards attributed the good results to patients feeling that they were in control of their disease and being motivated to stay within the guidelines of their target measures. Although acknowledging that not every practice has a dedicated nurse to fulfill this role, he said the model can be done economically and is currently being employed by several academic rheumatology centers.
Dr. Edwards offered other education tools available through the Gout Education Society, a nonprofit established in 2004 to improve the quality of care and minimize the burden of gout.
Remission
Next, Angelo L. Gaffo, MD, section chief of rheumatology at the Birmingham Veteran’s Affairs Medical Center and associate professor in the Division of Rheumatology at the University of Alabama, Birmingham, also highlighted the Nottingham model, referring to it as an augmented protocol of gout care. He said the model has become a standard of care supported by the ACR guidelines, and he encouraged rheumatologists to implement the model, if feasible.
Dr. Gaffo focused his discussion on the need for a better construct of remission in gout. In 2024, a simplified version of criteria for gout remission was shown to be associated with more patients achieving remission than the original criteria proposed in 2016.4 The simplified criteria for gout remission included achieving a serum urate target of <6 mg/dL checked twice in the prior 12 months, tophus (none) and flares (none in prior 12 months). The simplified version has been endorsed by the Outcome Measures in Rheumatology (OMERACT), and Dr. Gaffo said to expect this version to appear in future gout studies.
To further achieve gout remission, Dr. Gaffo said it’s important to resolve the issue of treating-to-target (i.e., a serum urate goal of <6 mg/dL in most patients) as endorsed by all the rheumatology societies or the alternative treat-to-avoid symptoms as proposed by the ACP (i.e., treat to avoid recurrent flares; no monitoring of urate levels). He pointed to data supporting treat-to-target and said upcoming clinical trials comparing the two approaches, such as the TRUST trial, will provide more information.5
Mary Beth Nierengarten is a freelance medical journalist based in Minneapolis.
References
- Briesacher RA, et al. Comparison of drug adherence rates among patients with seven different medical conditions. Pharmacotherapy. 2008 Apr;28(4):437–443.
- Kim A, Kim Y, Kim GT, et al. Comparison of persistence rates between allopurinol and febuxostat as first-line urate-lowering therapy in patients with gout: an 8-year retrospective cohort study. Clin Rheumatol. 2020 Dec;39(12):3769–3776.
- Rees F, Jenkins W, Doherty M. Patients with gout adhere to curative treatment if informed appropriately: Proof-of-concept observational study. Ann Rheum Dis. 2013 Jun;72(6):826–830.
- Tabi-Amponsah AD, Doherty M, Sarmanova A, et al. Post-hoc analysis of two gout remission definitions in a two-year randomized controlled trial of nurse-led versus usual gout care. Semin Arthritis Rheum. 2024 Sep 18:69:152555.
- Choi H. Treat-to-target serum urate versus treat-to-avoid symptoms in gout (TRUST) [NCT04875702]. ClinicalTrials.gov. 2024 Oct 1.
