Background/Purpose:  Recent management guidelines for gout have identified several unmet educational needs in gout patients. Qualitative studies have documented the paucity of patient-focused materials which facilitate ongoing patient-physician communication. Our objective was to develop and test a web-based interactive educational resource (electronic platform) for gout patients tailored to improve their knowledge and help facilitate communication with their physicians.

Methods:  The website was developed in four phases: 1. Two advisory panels – 30 gout patients and 10 gout experts iteratively a) reviewed pre-identified content areas of modifiable gaps in pathogenesis, natural history and treatment goals from previously conducted focus groups¹ and b) evaluated the design (graphics and lay out) of the website. 2. Incorporation of a validated Gout Knowledge Questionnaire (GKQ)² on gout and a 5-minute post-survey to assess knowledge about critical take-home messages and satisfaction with their physician’s care. 3. A team of web designers and health informatics experts tailored the content areas on the website to create a patient journey to learn various aspects of gout such as triggers of flares, comorbidities, pharmacologic and non-pharmacologic treatments, healthy gout diet, and lifestyle choices. 4. Beta testing was performed by 10 patients with gout in clinics for clarity and usability. The website is called MyGoutCare® and in the pilot study, the patient completes a baseline survey of demographics and gout knowledge, reviews the website and generates a list of customized questions (MyGoutReport®) to discuss at the upcoming visit with their physician. They next complete a post-survey within two weeks of the physician visit. Data was analyzed using a paired t-test and presented as mean change in scores between post and baseline surveys.

Results:  The pilot study recruited 50 subjects with gout from general medicine, podiatry, and rheumatology clinics. The mean age was 54 years, 88% were males, 82% Caucasian, and 68% consumed 7.5 drinks per week. Disease duration was 9.5 years and they reported 3-5 flares per year. All subjects were extremely receptive of the e-learning tool that was accessible 24/7. Post-survey scores on GKQ (mean score= 9.06, 0-10) improved significantly (20%) when compared to pre-survey scores (mean score= 7.12) with mean (SD) at 1.95 (1.93), p<0.0001 and effect size of 0.95. All subjects reported satisfaction with discussion on the natural history of disease and treatment choices with their physicians. They reported significant actionable changes moving forward, such as changing urate-lowering therapy (72%) and dietary/alcohol changes (28%-38%) to achieve flare-free status.

Conclusion:  Our pilot study suggests that web-based patient-focused materials can serve as a practical tool to positively impact the ongoing educational needs of patients in a busy clinical practice setting. Prospective adequately powered studies are needed to evaluate if this online tool will lead to better long term outcomes by improving patient-physician communication. References: ¹Khanna P. Ann Rheum Dis. 2013;72(Suppl3):768. ²Zhang LY. J Clin Rheumatol. 2011 Aug;17(5):242-8.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/development-and-pilot-testing-of-an-online-educational-tool-for-gout-patients-mygoutcare/