Background/Purpose: Gout is the most treatable arthritis in the Western World and there are effective medications available to treat both acute episodes and chronic gout. Prior studies have shown that treatment of chronic gout leads to improvement in patient-reported outcomes, and inadequate control has a substantial economic impact on the patient, employer, and society. Despite this, gout has the lowest adherence to medications (38%) across common chronic conditions such as hypertension, osteoporosis and diabetes mellitus. Currently, demographics, comorbidities, and poor adherence to chronic therapy are considered important attributes in developing poorly controlled gout. There is limited qualitative research assessing barriers to treatment and management among patients and health care providers. Therefore, we performed focus groups in patients with gout to identify conceptual gaps from patients’ perspective.

Methods: A trained moderator conducted formal in-depth focus groups in gout patients, who were enrolled using an online screening survey where they provided details of their gout management including medications. The script for the focus group included questions to test their knowledge about the natural history of gout, understanding about different aspects of treatment of gout (acute treatment vs. prophylaxis vs. chronic urate-lowering therapy), beliefs about how long the treatment should be taken, discussion on adherence to their medications, perceptions about the association between diet and alcohol and gout flares, and coping with an acute attack of gout. Adherence to medications was measured using a validated eight-question adherence instrument, Morisky Medication Adherence Scale, which is scored as low, medium, and high adherence.

Results: Twenty-four patients participated in 4 focus groups that lasted 90 minutes each. Baseline demographics showed predominantly white males (75%), 18% Hispanic, mean age 47.8 (15.4) years, 33% had tophaceous gout as diagnosed by their physician, and 62% were on ULT.  Majority were receiving care from their primary care physicians (PCP, n=13), 4 from a rheumatologist, and remaining from PCP/ other subspecialties (n=5), or self-treated (n=2). The following themes emerged upon transcription of the scripts from these sessions: 1) Patients did not have a clear understanding of the natural history of gout; 2) patients did not realize that recurrent acute flares resulted in chronic joint damage; 3) there was lack of knowledge regarding treatment options and duration of therapy for acute and chronic gout; 4) patients felt that physicians did not spend enough time explaining the progression, i.e. natural history of the disease and its long-term effects; 5)  patients did not grasp the need for chronic ULT to avoid complications and disability; and 6) patients were not aware of treatment goals for hyperuricemia, as evident by adherence to their gout medications. In these groups, 38% had low and 42% had medium adherence to their gout medications, respectively (per MMAS).

Conclusion: This qualitative study provides important insight into key modifiable variables that can be targeted to develop educational materials for patients.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/focus-groups-reveal-knowledge-gaps-in-patients-with-gout-a-qualitative-study/