Background Gout is the most treatable arthritis in the Western World with effective medications available to treat acute episodes and chronic gout. Despite this gout has the lowest adherence to medications in the US (38%) among chronic conditions. Comorbidities and poor adherence to chronic therapy are considered important attributes in developing poor outcomes. Qualitative research assessing barriers to treatment and management among patients and health care providers is limited1.
Objectives We performed focus groups in patients with gout and their providers to assess their understanding of gout.
Methods A trained moderator conducted formal in-depth focus groups in gout patients enrolled using an online screening survey. Questions included knowledge about the natural history of gout, understanding different aspects of treatment (acute treatment vs. prophylaxis vs. chronic urate-lowering therapy), beliefs about treatment duration, adherence to gout medications, perceptions about associations between diet and alcohol and gout flares, and coping with acute attacks. 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. The physician focus group enquired about their perspective of disease management and confirmation of themes that emerged from patient focus groups.
Results Twenty-four patients participated in 4 focus groups lasting 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: 1) Patients did not clearly understand 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 about treatment options and duration of therapy for both 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. The physician focus group (4 PCPs) revealed that they did not manage gout as a chronic disease which limited initiation of ULT and monitoring of serum urate to achieve the target. Thus, they did not follow best practices/available clinical guidelines for long-term management of gout. They admitted to time constraints during acute visits and is a major barrier in addressing education about lifestyle choices and ULT for chronic therapy.
Conclusions This qualitative study highlights knowledge gaps in both patients and their physicians. Targeted educational resources are clearly needed for patients in order to improve outcomes; however, processes need to be instituted to optimize delivery of care by their physicians.
References Harrold LR, Mazor KM, Velten S, Ockene IS, Yood RA. Patients and providers view gout differently: a qualitative study. Chronic Illn. 2010 Dec;6(4):263-71.
Disclosure of Interest P. Khanna Grant/research support from: ACR RRF Bridge Funding Award