Our study results should be interpreted while considering study limitations. Several authors disclosed financial ties to the pharmaceutical industry. The patients with gout who composed the patient panel were identified from the local community via emails to ACR member rheumatologists in academic and private practice in the Birmingham area. Currently housing more than 2,000 images, the ACR Image Library … American College of Rheumatology, Nov. 5-9. The gout was worse than my surgery.”, “When you have gout in heels, every step makes you hurt.”, “I have a sports car. Several rheumatology organizations have published gout treatment guidelines (3, 4). What More Can Congress do to Support Rheumatology Providers? 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. We did not, however, assess dose of HCQ, length of HCQ therapy, or compliance in our analysis and excluded those with known cardiovascular disease," Park said. 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. Starting ULT during a gout flare, after considering all benefits and risks and their overall balance, was the influential consensus feedback from the patient panel for the 2020 ACR gout guideline voting panel. If you do not receive an email within 10 minutes, your email address may not be registered, Although some patients had experienced side effects with either NSAIDs or colchicine, they thought that taking the alternative drug was reasonable to prevent flares during ULT initiation (Table 1). - Sean Fahey, MD Neogi and FitzGerald co‐chaired the ACR’s effort to develop the 2020 gout guideline. "Although 44 percent of RA/SLE patients demonstrated QTc length greater than 440 ms, no cardiac arrhythmic events were reported. Learn about our remote access options, Birmingham Department of Veterans Affairs Medical Center and The University of Alabama at Birmingham. Although the majority (six of eight patients) valued slow uptitration of ULT, the patient panel achieved consensus (75% endorsement) but did not achieve unanimous agreement. The nurse is standing there by you all the time.”, Clinical scenario 8: Managing gout flares: Oral, systemic injection, joint injection, “I don’t like the needle. Elizabeth Park, M.D., of the Columbia University Vagelos College of Physicians and Surgeons in New York City, and colleagues found that the use of hydroxychloroquine (HCQ), a disease-modifying antirheumatic drug (DMARD), did not affect QTc length even when adjusting for critical confounding factors, namely the use of other QTc-prolonging medications. In one study, Priyanka Ballal, M.D., of the Boston University Medical Center, and colleagues found that individuals with atrial fibrillation on warfarin had a higher risk for hip or knee replacement compared with individuals on direct oral anticoagulants (DOACs), and the association increased with duration of use. I was on crutches, I would do nothing.”, “When I had rotator cuff surgery, they completely opened me up. The authors evaluated data from the COVID-19 Global Rheumatology Alliance Provider survey (launched late March 2020), analyzing details for more than 1,300 patients with rheumatic disease in the United States diagnosed with COVID-19. There is widespread agreement from several leading organizations, including the National Academy of Medicine (formerly the Institute of Medicine), the Guidelines International Network (GIN), and the Appraisal of Guidelines for Research and Evaluation in Europe (AGREE), that patients should be involved in the development of clinical practice guidelines (6-8). The panel also endorsed the use of pegloticase for patients with severe gout, including tophaceous gout. A survey of 9,004 patients with rheumatic disease―both autoimmune-related and non-autoimmune―shows that patients may need continued medication counseling through the duration of the pandemic. Most participants either did not drink alcohol or were not regular drinkers. I didn’t want daily medication.”, “Mild is not the worry; several of us are mild now. The guideline leadership team selected several treatment scenarios to be shared with the patient panel, rather than the full set of questions and the full report, knowing that a limited amount of time was available for review and discussion. The patient panel reviewed several clinical treatment scenarios for gout management, along with the evidence report, one at a time. A lay language version of the document was created and provided to patients for their review during the patient meeting discussions (Supplementary Appendix 1). SAE was defined per the US Food and Drug Administration definition as an event that results in hospitalization, permanent injury, or death and includes (but is not limited to) conditions such as myocardial infarction, cardiovascular events, gastrointestinal bleeding, kidney failure, infection requiring intravenous antibiotics, and hospitalization for up to 2 wk. The inconvenience of frequent laboratory testing for titration was discussed; most patients understood the reason and were comfortable with it (Table 1). Scenarios focused on clinical questions (patient, intervention, comparison, outcomes [PICO]) in which patient preference was most directly relevant, including treatment choices for gout both for flares and long‐term lowering of urate levels), treatment escalation when first‐line treatment fails, treat to target, and the role of lifestyle modification. For a 50% or a 90% higher chance of achieving a target serum urate level, patients would accept low‐medium risk of SAEs (Table 2). Available for Android and iOS devices. This material is provided for educational purposes only and is not intended for medical advice, diagnosis or treatment. The lay language summary included the creation/simplification of two choice options for each PICO between A and B, a relevant literature summary synopsis, simple uniform coding for costs with dollar signs ($, $$, $$$), and a simplified system to summarize the risks and benefits of option A versus option B (! The authors performed a cross-sectional analysis of one systemic lupus erythematosus (SLE) cohort (retrospective electronic medical record review) and two rheumatoid arthritis (RA) cohorts (prospective cohort studies). As soon as he did that, no more wheelchair.”, “I would rather have a shot in the joint, rather than my butt. The patient panel favored more active management, preferring a treat‐to‐target management strategy (despite increased laboratory testing or provider visits), pegloticase for patients with severe manifestations of gout, and joint injections over oral medications for gout flares. In the absence of high‐ or moderate‐quality evidence, or when there is a balance between benefits and risks, patient values and preferences become very important in making shared treatment decisions. These were important discussions that can inform health care providers regarding patient goals and preferences for gout treatment in clinic settings. I went in a wheelchair to my rheumatologist. The duration of anti‐inflammatory prophylaxis (3 versus 6 months) was discussed. 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. And now I am at 300 mg dose.”, “Draw up your personal plan, [t]hen have your uric acid checked, [a]nd then change [t]he dose; [t]his is clearly more definitive.”, “Always want the [l]owest dose, [t]he only negative is more doctor visits, [o]r more [b]lood draws. It would cost me $40 every time. Dr. Singh is a member of the Executive Committee of Outcome Measures in Rheumatology (OMERACT), an organization that develops outcome measures in rheumatology and receives arms‐length funding from 12 companies. In general, patients were willing to tolerate some non‐severe serious adverse events (SAEs) to benefit from gout treatments (Table 2). Patients were willing to accept more risk for the treatment of tophi. We believe that in‐depth qualitative work such as this, done prior to the development of a treatment guideline, is essential to understand and incorporate patient priorities, preferences, and values into a treatment guideline. Following the ACR guideline methodology to directly involve patients in guideline development, in this qualitative study, a patient panel consisting of patients with varying severity of gout discussed key clinical scenarios related to the management of gout. They considered this decision to be very specific to a patient’s situation (Table 1). Although we selected patient panel members with diversity across disease severity, age, race/ethnicity, and health care receipt from private versus academic rheumatology offices, they are not representative of all patients with gout. If I take Aleve I am groggy. The patient panel favored earlier urate‐lowering therapy (ULT) use both through initiation of ULT for patients with mild or earlier disease and through starting ULT during a gout flare. 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. The patient panel achieved consensus on treat to target with the more active management strategy, with all eight patients agreeing with this approach. As an example, in the 2015 ACR rheumatoid arthritis (RA) treatment guideline, the RA patient panel voiced stronger preference for triple therapy over monotherapy than did the provider panel (10). The discussion was recorded, transcribed verbatim, and reviewed for the accuracy of notes taken during the meeting by ACR staff. I was in the worst pain in my life.”, “When I get the attack, just hit me with a shot‐ it’s so bad.”, Clinical scenario 2: Anti‐inflammatory prophylaxis with ULT initiations, “I would do it every day. Each participant then provided a brief account of their journey with gout. Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. 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, … November 06, 2020 - November 11, 2020 Washington D.C. American College of Rheumatology Annual Meeting. The patient panel also achieved consensus on treat to target with a more active management strategy than a fixed strategy. On average, patients valued an SAE “much more” and a non‐SAE “more” than a benefit, such as reduction of flares, achievement of the target serum urate level, resolution of tophi, or improvement in QOL. ACR Open Rheumatology is the official open access journal of the American College of Rheumatology. It always works better when they inject my joint.”, “After the shot of the medicine in my joint, I went from a wheelchair to crutches in not much time.”, “I was limping and they gave me a shot in the muscle, And it felt a lot better.”, “I walked in limping. I don’t have to call the doctor’s office or remember to ask.”, Clinical scenario 5: Treating to target with active management strategy, “It’s worth it not to have flares in the long run.”, “I support the active approach. I always ask what my uric acid is; I want to know. TUESDAY, Nov. 17, 2020 -- In the older male population, there is a high level of underdiagnosis and undertreatment of osteoporosis, according to a study presented at ACR Convergence, the annual meeting of the American College of Rheumatology, held virtually from Nov. 5 to 9. A detailed description of both the study and patient participant expectations was provided to these rheumatologists, who shared it with patients they thought would actively participate. E‐mail: Jasvinder.md@gmail.com. They acknowledged that patients with gout who experience only infrequent flares in the beginning may be less willing to take long‐term medication. The panel was also in agreement about using oral medications at home to prevent and abort gout flares early as well as using intramuscular injections for more severe flares (no vote for this statement). Whereas some panel members were comfortable with a 6‐month duration of prophylaxis, others questioned the value beyond 3 months, and wanted to see the evidence of use for 3‐ versus 6‐months. Patients discussed this issue with great interest. Janssen Highlights Data from Rheumatology Portfolio During the American College of Rheumatology Convergence 2020 Virtual Scientific Program Thirty-five abstracts with clinical trial data … The researchers found that warfarin users had a 57 percent increased risk for having a knee replacement or hip replacement compared with DOAC users. Patient panel participants discussed their perspectives regarding the choices and what factored into their choices and why. Please check your email for instructions on resetting your password. ACR: Incidence of COVID-19 Low in Patients With Rheumatic Disease. Select one or more newsletters to continue. The ACR represents more than 7,700 rheumatologists and rheumatology health professionals around the world. This resulted in recommendations that valued more active management over less aggressive options and included recommendations to start ULT for patients with early disease and to use a more active treat‐to‐target protocol (despite additional laboratory testing or provider visits) to achieve better control of their gout. They considered this convenient because the patient is already seeing the doctor (Table 1). 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 specialists, physicians, scientists, and other health professionals. and you may need to create a new Wiley Online Library account. American College of Rheumatology Annual Meeting. November 06, 2020 - … The patient panel achieved unanimous consensus on starting ULT during a flare rather than waiting until after the gout flare resolution. "Given these potential adverse effects of warfarin on joint health, our study suggests that DOACs could be considered for managing atrial fibrillation among patients who have osteoarthritis.". The American College of Rheumatology (ACR) has published its 2020 update to the gout treatment guideline, reinforcing treat‐to‐target paradigms that should improve the quality of gout care (5). The panel was in favor of starting ULT during a gout flare. The patient panel included eight men with gout. ACR: Corticosteroid Injections Do Not Speed Progression of Knee OA. The patient panel achieved consensus on early ULT initiation to avoid flares, reduce functional limitation, improve QOL, and avoid longer‐term negative outcomes, such as tophi, regardless of disease severity (even in mild gout). The full text of this article hosted at iucr.org is unavailable due to technical difficulties. The patient panel achieved unanimous consensus on urate‐lowering therapy (ULT) initiation, with 8 of 8 people voting for it. In another study, Milena Gianfrancesco, Ph.D., of the University of California in San Francisco, and colleagues found that racial/ethnic-minority patients with rheumatic disease and COVID-19 had increased odds of hospitalization and need for ventilatory support. However, if an effective alternative with fewer side effects existed, they agreed with changing to that alternative. Our research supports the importance of adequate vitamin K and dependent proteins for limiting progression of osteoarthritis," Ballal said. This approach was considered practical and feasible because it would allow the patient to start ULT as soon as possible, and the patient panel did not consider education about gout flare management alongside information on ULT therapy to be too much information at once. Although the majority (six of eight patients) valued anti‐inflammatory prophylaxis with ULT initiation with consensus (75% endorsement; consensus was defined as 70% or more endorsement), the patient panel did not achieve unanimous agreement. It’s always at the back of my mind.”, “Taking any pill every day is a pain in the butt.”, “I was willing to go through mild symptoms and still avoid taking medications.”, “No question, I would take the mediation.”, “You are going to do everything to not get it this bad.”, “I had my symptoms. Participants were provided with breakfast and lunch. 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). Dr. Singh is the chair of the Veterans Affairs Rheumatology Field Advisory Committee. 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