Patients favored more active urate‐lowering therapy (ULT) management and interventional management of gout flares to achieve desired clinical outcomes, resulting in unanimous consensus on choices related to six clinical scenarios: ULT initiation in gout, treat‐to‐target management strategy, use of pegloticase for refractory gout, starting ULT during a gout flare, using injectable treatments (over oral) for acute gout flares, and use of febuxostat in people with cardiovascular disease. Abbreviations: QOL, quality of life; SAE, serious adverse event; sUA, serum urate. The patient panel discussion summary related to several specific questions was also useful because it was reviewed with the 2020 ACR gout guideline voting panel members prior to their discussions and final vote on these same clinical scenarios (see Supplementary Appendix 1). We thank Amy Turner and Regina Parker of the ACR for organizing the patient panel meeting, providing administrative support for the meeting, taking notes during the meeting, and providing feedback on this article. Our research supports the importance of adequate vitamin K and dependent proteins for limiting progression of osteoarthritis," Ballal said. Most patients were comfortable with taking colchicine or taking nonsteroidal anti‐inflammatory drugs (NSAIDs) (Table 1). I went in a wheelchair to my rheumatologist. The full text of this article hosted at iucr.org is unavailable due to technical difficulties. It’s better to have something in your body when you are in a flare.”, “My gout ‐ this was discovered when I was in the hospital for different reason. If you didn’t have insurance, maybe it costs a lot more.”. The American College of Rheumatology (ACR) can Help Combat Insurance Frustrations; Explore This Issue October 2020. Spearheaded by the American College of Rheumatology’s (ACR) Collaborative Initiatives (COIN) Department By providing an array of complimentary tools and resources to healthcare providers, … The American College of Rheumatology Provisional Composite Response Index for Clinical Trials in Early Diffuse Cutaneous Systemic Sclerosis Arthritis Rheumatol . I can’t take that stuff in particular. Dr. Singh is the editor and the director of the University of Alabama at Birmingham Cochrane Musculoskeletal Group Satellite Center on Network Meta‐Analysis. Then go slow to help them.”, “Blood test after blood test, then I got to a stable level. However, if they had mild gout that was controlled by medication, then a diet change was not a priority. In conclusion, a patient panel consisting of people with varying degrees of gout severity provided exceptional insights into several clinical scenarios that are common but for which management is frequently debated between primary care physicians and rheumatologists. Clinical scenario 6: For a patient on febuxostat who had cardiovascular disease, should they stop or change the drug? Our study results should be interpreted while considering study limitations. Mild, moderate, and severe gout were defined at the beginning of the discussion as follows: The patient panel group session was led by an experienced moderator (JAS) (15, 25) and lasted 6 hours. “If it’s helping your quality of life, and it hasn’t caused a heart problem, why change it.”, “If you’re working it might be challenging to take pegloticase infusions.”, “If not financially crippling, then yes.”, Clinical scenario 7: Pegloticase in ULT failure with frequent gout flares, tophi, or uncontrolled serum urate levels, “This is the best thing out there. The moderator asked the participants if they had any questions and addressed each participant question regarding various aspects of the introduction. - Sean Fahey, MD Per the authors of the joint replacement guideline, this “drove the direction of the recommendations (uniformly in favor of withholding any medications in which evidence from nonoperative populations suggested an increase in infection) (11).”. 2020 Apr;72(4):461-488. doi: … Of these eight participants, seven received their gout care from a rheumatologist and one from a primary care physician. The journal publishes high-quality articles reporting on original investigations in all aspects of rheumatology … Two authors disclosed financial ties to the pharmaceutical industry. They agreed that if they had moderate or severe gout, they would make dietary changes only if gout cannot be controlled any other way and if that would help prevent gout flares (Table 1). The researchers found that adjusted QTc length was comparable between HCQ users and nonusers. Following this, the panel moderator reviewed the chosen clinical scenarios and the supporting evidence with the patient panel. Because of limited time for the patient panel meeting, we were unable to perform a discrete choice experiment for trade‐offs between efficacy and adverse events, which would have provided us with more valid estimates of preference. Fellow in Training Member, Annual Meeting Planning Committee American College of Rheumatology 2017 - 2018 Member Connective Tissue Disease Subspecialty Group, Division of Rheumatology, … Try watching this video on www.youtube.com, or enable JavaScript if it is disabled in your browser. [Review], Quality of life and quality of care for patients with gout, The British Society for Rheumatology guideline for the management of gout [published erratum appears in Rheumatology (Oxford) 2017;56:1246], 2016 updated EULAR evidence‐based recommendations for the management of gout, 2020 American College of Rheumatology guideline for the management of gout, National Academies of Sciences, Engineering, and Medicine. Press Release UCB Showcases Key Rheumatology Data at American College of Rheumatology Convergence 2020 Published: Nov. 5, 2020 at 6:00 p.m. Two members favored a fixed ULT dose regimen based on their experiences because a fixed dose achieved desired results without adverse events, and a reduction of the ULT dose led to frequent gout flares in one patient. Standards for developing trustworthy clinical practice guidelines, About the GIN public toolkit: patient and public involvement in guidelines, AGREE II‐Global Rating Scale (AGREE II‐GRS) instrument, The next step in guideline development: incorporating patient preferences, When patients write the guidelines: patient panel recommendations for the treatment of rheumatoid arthritis, 2017 American College of Rheumatology/American Association of Hip and Knee Surgeons guideline for the perioperative management of antirheumatic medication in patients with rheumatic diseases undergoing elective total hip or total knee arthroplasty, Clinical practice guidelines: incorporating input from a patient panel, Do patient preferences for core outcome domains for chronic gout studies support the validity of composite response criteria? Patients discussed this issue with great interest. This study was supported by funding and resources of the American College of Rheumatology (ACR). I would rather have a shot in the joint, rather than my butt. Reduction in alcohol use and weight loss were considerations for the patient but only if discussed by their provider as effective strategies for gout management (no vote for this statement). Learn about our remote access options, Birmingham Department of Veterans Affairs Medical Center and The University of Alabama at Birmingham. Despite invitations being extended, no women with gout attended the panel meeting. "Therefore, treatment decisions (i.e., whether to start/stop/modify HCQ therapy) in patients with other risk factors of QT prolongation or coexisting cardiovascular disease, still should be an individualized approach or case-by-case review. A patient panel consisting of eight patients with gout provided patient preferences and values related to gout and gout treatments to inform recommendation statements for the 2020 American College of Rheumatology gout treatment guideline. In addition, the investigators found an increasing risk for knee or hip replacement surgery with the duration of warfarin use compared with DOAC use. ACR staff also provided patients with the same gout guideline evidence report that was provided to the 2020 ACR gout treatment guideline voting panel. Of these eight participants, seven saw a rheumatologist for their gout care and one saw a primary care physician. The annual meeting of the American College of Rheumatology was held virtually this year from Nov. 5 to 9 and attracted participants from around the world, including rheumatology … The discussion was recorded, transcribed verbatim, and reviewed for the accuracy of notes taken during the meeting by ACR staff. Based in Atlanta, GA, the American College of Rheumatology is a professional association for physicians, health professionals and scientists who work in the medical subspecialty of rheumatology. However, if an effective alternative with fewer side effects existed, they agreed with changing to that alternative. Dr. Singh previously served as a member of the ACR Annual Meeting Planning Committee and Quality of Care Committee, as the chair of the ACR Meet the Professor/Workshop/Study Group Subcommittee, and as the co‐chair of the ACR Criteria and Response Criteria Subcommittee. Therefore, the ACR has prioritized and conducted patient panel meetings before the guideline voting panel meetings for several guidelines to inform these discussions (10, 12). Abbreviation: ULT, urate‐lowering therapy. The researchers found that Black, Latinx, and Asian patients with rheumatic disease diagnosed with COVID-19 had approximately two to three times higher odds of hospitalization compared with White patients. We are a professional membership organization committed to improving the care of patients with rheumatic disease and advancing the rheumatology subspecialty. Arthritis & Rheumatism 33:160, 1990) has established general classification guidelines for FM ref 8. If you do not receive an email within 10 minutes, your email address may not be registered, The gout was worse than my surgery.”, “When you have gout in heels, every step makes you hurt.”, “I have a sports car. For the ACR guideline for perioperative management of rheumatic disease patients undergoing total joint replacement (25), the patient panel weighted concern for infection risk over flare risk. Then my rheumatologist moved me back to 300 mg so I ended up with 300 milligrams was always ok.”, Clinical scenario 4: Starting ULT during a flare, “Capture it when the attention is there.”, “When I’m in pain during the flare. Use the link below to share a full-text version of this article with your friends and colleagues. ACR: Warfarin Tied to Increased Risk for Knee, Hip Replacement in OA. 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