Mine is mild, but by taking my medication every day; that’s what keeps it mild.”, “I have mild also, but I believe in keeping my pill on.”, “I do it [take ULT] to reduce the risk of gout flare and the tophi.”, “I think allopurinol is one of the best medicines you can take.”, “It’s a pill you take once a day. It always works better when they inject my joint. Despite invitations being extended, no women with gout attended the panel meeting. I can’t take that stuff in particular. 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. Janssen Highlights Data from Rheumatology Portfolio During the American College of Rheumatology Convergence 2020 Virtual Scientific Program Thirty-five abstracts with clinical trial data … Participants were provided with breakfast and lunch. The patient panel focused on the impact of pegloticase on tophi and gout flare reduction and overall QOL. As soon as he did that, no more wheelchair. The American College of Rheumatology (ACR) (Wolfe, et al. Knowledge of patient preferences and values is valuable and was influential for the development of the 2020 ACR gout treatment guideline. 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. 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. Abbreviations: QOL, quality of life; SAE, serious adverse event; sUA, serum urate. For the 2020 ACR gout guideline, in addition to patient representation on the 2020 gout guideline voting panel, we too conducted an in‐depth focus group of patients with gout prior to the face‐to‐face meeting to understand patient values and preferences related to gout, gout management, and risk‐benefit trade‐off. Learn more. 2020 Apr;72(4):461-488. doi: … Interestingly, many of the patients on the panel reported that they were initially hesitant to start ULT, but after experiencing improved control of inflammatory symptoms and reduction in tophi (in some participants), they became strong advocates for early intervention focused on lowering urate levels (Table 1). FRIDAY, Nov. 13, 2020 -- For patients with knee osteoarthritis, corticosteroid injections do not speed progression compared with hyaluronic acid injections, according to a study presented at ACR Convergence, the annual meeting of the American College of Rheumatology, held virtually from Nov. 5 to 9. It really worked for me, when nothing else worked.”, “This is worth it. Mild: no gout flares in the last year, one occasional flare in the last 5 years, serum urate level controlled, and quality of life (QOL) and functional ability with mild or no impairment, Moderate: one gout flare in the last year, serum urate level elevated, and QOL and functional ability with moderate impairment, Severe: two or more gout flares in the last year, serum urate level very high, multiple visible tophi, and QOL and functional ability severely impaired. MONDAY, Nov. 16, 2020 -- The American College of Rheumatology (ACR) previewed its 2020 Guideline for the Management of Rheumatoid Arthritis at ACR Convergence, the College's annual meeting, held virtually from Nov. 5 to 9. 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). 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). These guidelines require that widespread … Working off-campus? The ACR staff and panel moderator had expertise in guideline development and GRADE methodology. The patient panel considered the current gout flare as a “good window of opportunity” to start ULT to enhance patient attention and motivation and potentially improve long‐term adherence and persistence with ULT. In contrast, we found no differences in COVID-19 mortality by race/ethnicity among patients with rheumatic disease," Gianfrancesco said. The ACR … The full text of this article hosted at iucr.org is unavailable due to technical difficulties. MDedge Rheumatology offers medical news and views, conference coverage, news summaries of journal articles and guidelines, FDA and CDC alerts, CME, and health policy and business of medicine news. Most of us know side effects of Aleve, so we are comfortable with it. A lay language version of the document was created and provided to patients for their review during the patient meeting discussions (Supplementary Appendix 1). ; in cases of very low evidence, no sign). Fellow in Training Member, Annual Meeting Planning Committee American College of Rheumatology 2017 - 2018 Member Connective Tissue Disease Subspecialty Group, Division of Rheumatology, … 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. It really worked for me, when nothing else worked” (Table 1). If you didn’t have insurance, maybe it costs a lot more.”. The researchers found that adjusted QTc length was comparable between HCQ users and nonusers. This patient panel project was facilitated by the same ACR staff who facilitated the 2020 ACR gout treatment guideline development project, which took place approximately 2 weeks after the patient panel meeting, as well as by a rheumatologist gout guideline voting panel member (JAS). 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). Because only one of the patient panel members had used pegloticase for his gout, he shared his experience with the group, both of tophaceous gout with significant disability and of a favorable response to pegloticase (significant improvement in his QOL and reduction of flares) when all else had failed: “This is the best thing out there. As soon as he did that, no more wheelchair.”, “I would rather have a shot in the joint, rather than my butt. Patients preferred a personalized approach in the active management strategy, in which doctor visits and laboratory testing allowed for the selection of the most optimal ULT dose for their disease (Table, The patients recognized that those with concomitant conditions, such as diabetes or kidney problems, or those who are hospitalized and worried about increased infection or gastrointestinal risks would prefer joint injections as a first option, but having quick access to joint injections that are given by well‐trained professionals (such as rheumatologists) is very important and sometimes lacking (Table, orcid.org/https://orcid.org/0000-0003-3485-0006, orcid.org/https://orcid.org/0000-0002-9515-1711, orcid.org/https://orcid.org/0000-0002-8419-7538, I have read and accept the Wiley Online Library Terms and Conditions of Use, Gout: why is this curable disease so seldom cured? 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. Some clinical scenarios that were less relevant to patient preference, such as checking the urinary uric acid level prior to prescribing a uricosuric medication for lowering the urate level, were excluded. 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. For a 50% or a 90% gout flare reduction or improvement in QOL in moderate‐severe gout, people considered a low‐medium risk of SAEs to be acceptable (Table 2). Dr. Singh serves on the US Food and Drug Administration Arthritis Advisory Committee. Patient panel participants discussed their perspectives regarding the choices and what factored into their choices and why. Jasvinder A. Singh, Tuhina Neogi, John D. FitzGerald, Patient Perspectives on Gout and Gout Treatments: A Patient Panel Discussion That Informed the 2020 American College of Rheumatology Treatment Guideline, ACR Open Rheumatology… Many people continued to consume drinks with high‐fructose corn syrup, such as sodas. It’s worth it not to have flares in the long run. All authors were involved in drafting the article or revising it critically for important intellectual contact, and all authors approved the final version to be published. Patients valued receiving a ULT prescription at their visit for a gout flare so that ULT could be started right away. 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? The session started with brief introductions of all participants, who were seated in a conference room with a U‐shaped seating arrangement. I went in a wheelchair to my rheumatologist. Boston University School of Medicine, Boston, Massachusetts, University of California, Los Angeles and Department of Veterans Affairs Greater Los Angeles Healthcare System. The patient panel achieved unanimous agreement to begin pegloticase for patients with severe or very severe gout manifested by frequent flares and tophaceous gout. 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. I went every three months. The severity of pain from gout flares and functional limitations and/or disfiguring appearance of tophi drove this patient panel’s passionate desire to avoid gout flares and reduce tophi as effectively as possible. 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).”. “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. However, because of time constraints, we were unable to assess all the clinical scenarios that were voted on by the gout guideline voting panel. 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. MONDAY, Nov. 16, 2020 -- For adults with atrial fibrillation, warfarin is associated with an increased risk for knee and hip replacements for osteoarthritis, according to a study presented at ACR Convergence, the annual meeting of the American College of Rheumatology, held virtually from Nov. 5 to 9. Then, I had a gout attack in my elbow and wrist on the same side. [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. E‐mail: Jasvinder.md@gmail.com. The results of this study will be presented by Michael George, M.D., of the University of Pennsylvania during the annual meeting of the American College of Rheumatology … Then go slow to help them.”, “Blood test after blood test, then I got to a stable level. I always ask what my uric acid is; I want to know. 2016 Feb;68(2):299-311. doi: … I was on crutches, I would do nothing.”, “When I had rotator cuff surgery, they completely opened me up. The ACR represents more than 7,700 rheumatologists and rheumatology health professionals around the world. The leading publications of the American College of Rheumatology are now available in one app for your tablet and phone. to !!!! One patient with concomitant kidney disease would not take it because he worried about potential kidney side effects. The journal publishes high-quality articles reporting on original investigations in all aspects of rheumatology … Several rheumatology organizations have published gout treatment guidelines (3, 4). 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. 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. 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. They started it right away.”, “If you are concerned about your health, you want to take it.”, “If you prescribe me allopurinol during the flare, then I have the medication. Invitation emails asking patients to participate in a 6‐hour focus group were sent to patients by ACR staff. Patients discussed several scenarios and considered risks (adverse events; patients commonly used the term “side effects”) and benefits of starting a particular drug (to reduce flares) to treat their gout. The panel was in favor of starting ULT during a gout flare. They also provided their preference for one of the two treatment options for each clinical scenario. Because this was a single‐center study with only eight patients, the generalizability of these findings beyond the scope of the original intent are limited. The members understood the hypothetical concern about overloading patients with ULT information and medications during a gout flare, but the panel felt that most patients would be able to adequately follow ULT education during a gout flare (Table 1). Then my uric acid started going up. Most patients were in favor of taking anti‐inflammatory prophylaxis when starting ULT. - Sean Fahey, MD However, they realized from personal experience the difficulty in achieving and sustaining weight loss and the possibility that some weight loss diets increase the risk of gout flares. Clinical scenario 6: For a patient on febuxostat who had cardiovascular disease, should they stop or change the drug? Interested patients reached out to the ACR directly with a brief statement of interest and an attestation from their rheumatologist that they had been diagnosed with gout. Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. The objective of this study was to understand patient perspectives to inform the voting process for the 2020 American College of Rheumatology (ACR) gout treatment guideline. This material is provided for educational purposes only and is not intended for medical advice, diagnosis or treatment. 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. The inconvenience of frequent laboratory testing for titration was discussed; most patients understood the reason and were comfortable with it (Table 1). These were important discussions that can inform health care providers regarding patient goals and preferences for gout treatment in clinic settings. Enter your email address below and we will send you your username, If the address matches an existing account you will receive an email with instructions to retrieve your username. Maybe they should?”, Clinical scenario 9: Lifestyle modifications: Alcohol use, “It also depends on how much you are eating or drinking.”, <1% (mild gout); up to 5%, moderate‐severe gout. Two authors disclosed financial ties to the pharmaceutical industry. American College of Rheumatology, Nov. 5-9, We comply with the HONcode standard for trustworthy health information -, Adverse Events Up With Tourniquet Use in Knee Replacement, Continuing Treatment Not Beneficial After Five Years of Bisphosphonates, AvKARE Issues Voluntary Nationwide Recall of Sildenafil 100mg Tablets and Trazodone 100mg Tablets Due to Product Mix-Up, Torrent Pharmaceuticals Limited Issues Voluntary Nationwide Recall of Anagrelide Capsules, USP Due to Dissolution Test Failure, FDA Alerts Healthcare Professionals About the Risk of Medication Errors with Tranexamic Acid Injection Resulting in Inadvertent Intrathecal (Spinal) Injection. When I was younger, I could take any medication.”, “If you are paycheck to paycheck, you are in a different position. For each scenario, participants voted for the main question by a show of hands or individual response in a round‐robin fashion. 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). "This latter observation is particularly relevant since people with atrial fibrillation often require lifelong anticoagulation. Most participants either did not drink alcohol or were not regular drinkers. I said give me a shot of the joint. 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. The investigators performed a nested, case-control study using the Health Improvement Network, a U.K. general practitioner-based electronic medical record database. In the absence of such work, there is a risk of formulating potentially meaningless recommendations for ULT use and/or recommendations that are paternalistic and that may not account for factors that may be weighed differently between patients and health care providers. Patients were referred to the project by private and academic rheumatologists in the Birmingham area. I was ok with it at first. ACR: Warfarin Tied to Increased Risk for Knee, Hip Replacement in OA. and you may need to create a new Wiley Online Library account. 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. ACR: Incidence of COVID-19 Low in Patients With Rheumatic Disease. 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). Following this, the panel moderator reviewed the chosen clinical scenarios and the supporting evidence with the patient panel. The patient panel also was not concerned about receiving information about management of the gout flare and long‐term management of their gout at the same time. This discussion occurred openly within the group; the moderator ensured that all voices were heard during the discussion by prompting participants who were less vocal during some discussions. The panel remained unanimous in their support of ULT treatment even for patients with mild gout because the panel members valued preventing long‐term negative outcomes, such as recurrent flares or tophi, over any inconvenience of daily ULT. In addition to comments on specific recommendations, the patient panel feedback on the importance of laboratory and clinical outcomes helped affirm the voting panel’s consideration of the serum urate level as being among the critical outcomes as important as flares and tophi. The duration of anti‐inflammatory prophylaxis (3 versus 6 months) was discussed. Of these eight participants, seven received their gout care from a rheumatologist and one from a primary care physician. With the help of a physician moderator, the patient panel reviewed nine key clinical scenarios and the supporting evidence and discussed their views and perspectives related to each. Of these eight participants, seven saw a rheumatologist for their gout care and one saw a primary care physician. 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. 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. Currently housing more than 2,000 images, the ACR Image Library … "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 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. 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. For each question, we first provide the conclusion from the panel followed by main discussion points, noting key exceptions or disagreements with the majority opinion. 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. They acknowledged the potential negative impact on the current flare but still supported this approach. The patient panel achieved unanimous consensus on starting ULT during a flare rather than waiting until after the gout flare resolution. These discussions were important discussions that can inform health care Providers regarding patient goals and for! The discussion verbatim Rheumatology health professionals around the world eight men ( four who were White and four who African! 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