Background/Purpose: Gout is the most common inflammatory arthritis in adults, with great impact on quality of life. Despite excellent therapeutic options, outcomes remain suboptimal. Research supports the need for patient-centered education interventions as an integral part of effective gout management. While studies have demonstrated that provider-created knowledge assessments can be a first-step in designing patient education interventions, they have not typically included patient identified needs. This is especially important since gout patients need assistance in diet and lifestyle change in addition to urate management. We developed a needs assessment which inquired about patient perspective and self-efficacy re: gout self-management. Our purpose was to identify disease–specific knowledge gaps and patient-identified concerns, to ensure their inclusion in a patient education initiative for gout patients.

Methods: We developed a 26-item needs assessment, including Likert & open-ended questions to assess patient self-efficacy around essential gout-related knowledge and patient-identified needs to enhance self-management. Knowledge-based questions were derived from evidence-based clinical guidelines re: gout treatment and lifestyle changes and data from our concurrent gout patient education study. Potential participants (357) were treated for gout by rheumatologists in an ambulatory clinic or private office and approached either in person or by mail.

Results: One hundred questionnaires were completed, with a return rate of 42/294 (14%) by mail and 58/63 (92%) in-person. Mean yrs since diagnosis: 10.8; M74%, F26%; mean age: 64 yrs; Race/Ethnicity: White 78% Asian 12% African American 7% Latino 2%. Completed college or above: 79%. In the preceding 6 months 13.4% had >3 flares; of these, 33% felt their gout was “under control.” Fifty-four % of respondents did not know “how often to have uric acid checked”; in patients with >3 flares in past 6 months , 77% did not know; 29% did not know their uric acid goal; 51% of all respondents did not know “how to manage side-effects of medications.” When asked about purpose of bridge therapy, 60% were unsure or did not answer; 55% did not answer or didn’t know when they should discontinue bridge therapy. When asked about “information of most interest [to them]”, most frequent response was diet guidelines; 83% wanted to hear from an MD; 61% from a nutritionist.

Conclusion: Even in a highly educated sample of rheumatologist-treated gout patients with a mean diagnosis of 10.8y, we found major patient knowledge gaps in essential gout-related self-management skills. Core findings include gaps related to: uric acid goals, frequency of testing, bridge therapy and outcome expectations. In open-ended questions, patients stated a desire for more information about diet guidelines, and input from a nutritionist. Our results are consistent with prior studies showing large gaps in critical gout patient knowledge, which are likely associated with widely reported poor gout patient outcomes. Our data informed the content of an educational symposium for gout patients and may be of use to others involved in enhancing self-management and improving outcomes for gout patients.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/developing-a-gout-needs-assessment-incorporating-patient-perspective-on-self-management-self-efficacy-and-disease-specific-knowledge-to-inform-a-patient-education-initiative/