Abstracts tagged "Patient reported outcomes"

Abstract Number: 1160 • ACR Convergence 2021
Evaluation of HCQ Side Effects in New and Prevalent Users over a 20 Year Period Using a Large Database
Diana Meyler¹, Sofia Pedro², Alan Erickson³, Patricia Katz⁴ and Kaleb Michaud³, ¹UNMC, Omaha, NE, ²Forward, The National Databank for Rheumatic Diseases, Wichita, KS, ³University of Nebraska Medical Center, Omaha, NE, ⁴University of California San Francisco, San Francisco, CA
Background/Purpose: Despite being used for more than 70 years as a conventional (cs) DMARD, very little is known about the overall side effect (SE) profile…
Abstract Number: 1287 • ACR Convergence 2021
Association of Limited Health Literacy with Patient-Provider Communication in Systemic Lupus Erythematosus
Ann Barr¹, Catherine Howe², Jennifer Rogers¹, Jayanth Doss¹, Rebecca Sadun¹, Lisa Criscione-Schreiber³, Megan Clowse⁴, Kai Sun³ and Mithu Maheswaranathan³, ¹Duke University, Durham, NC, ²Duke University Hospital, Durham, NC, ³Duke University School of Medicine, Durham, NC, ⁴Duke University, Chapel Hill, NC
Background/Purpose: Low health literacy is common among US adults, including patients with SLE, and is associated with higher disease activity and worse patient-reported outcomes. The…
Abstract Number: 1596 • ACR Convergence 2021
Changes in Patient-Reported Outcome (PRO) Scores During the COVID-19 Pandemic: Data from the ArthritisPower Research Registry
Kelly Gavigan¹, Esteban Rivera¹, Jeffrey Curtis², Shilpa Venkatachalam¹, Laura Stradford³, David Curtis¹ and William Nowell¹, ¹Global Healthy Living Foundation, Upper Nyack, NY, ²Division of Clinical Immunology and Rheumatology, Department of Medicine, Department of Epidemiology, University of Alabama at Birmingham, Birmingham, AL, ³Global Healthy Living Foundation, Nyack, NY
Background/Purpose: The COVID-19 pandemic caused particular concern among patients with autoimmune and rheumatic disease (ARD) due to increased risk of infection, and heightened sense of…
Abstract Number: 1871 • ACR Convergence 2021
Characterization of Symptoms of Nasal Disease in Relapsing Polychondritis Using Patient-Reported Data
Shubhasree Banerjee¹, Nancy Linn², nathalie costedoat-Chalumeau³, Guillaume Moulis⁴, Peter Merkel¹, Peter Grayson⁵ and Marcela Ferrada⁶, ¹University of Pennsylvania, Philadelphia, PA, ²Relapsing Polychondritis Foundation Inc., New York, NY, ³Inserm DR Paris 5, Paris, France, ⁴Toulouse University Hopital, Toulouse, France, ⁵National Institutes of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), National Institutes of Health (NIH), Bethesda, MD, ⁶National Institutes of Health, Bethesda, MD
Background/Purpose: Nasal chondritis is a well-recognized manifestation of relapsing polychondritis (RP), occasionally leading to saddle nose deformity. Early symptoms of nasal chondritis such as nose…
Abstract Number: 0314 • ACR Convergence 2021
PROMIS Provides a Broad Overview of Health-Related Quality of Life in the Evaluation of Sjogren’s Syndrome
Dana DiRenzo¹, Susan Robinson², Clifton Bingham¹, Alan Baer³ and Thomas Grader-Beck¹, ¹Johns Hopkins University, Baltimore, MD, ²Johns Hopkins, Baltimore, MD, ³Johns Hopkins University School of Medicine, Baltimore, MD
Background/Purpose: Sjogren’s Syndrome (SS) is a systemic autoimmune disease that has considerable impact on health-related quality of life (HRQL). The European League Against Rheumatism (EULAR)…
Abstract Number: 0630 • ACR Convergence 2021
Telemedicine in Rheumatology Care: A Systematic Review
Lesley Jackson¹, Timothy Edgil², Brittany Hill³, Catherine H. Smith⁴, Jasvinder Singh¹ and Maria I. Danila¹, ¹University of Alabama at Birmingham, Birmingham, AL, ²Division of General Internal Medicine, University of Alabama at Birmingham, Birmingham, AL, ³Brookwood Baptist Health, Leeds, AL, ⁴Lister Hill Library of the Health Sciences, University of Alabama at Birmingham, Birmingham, AL
Background/Purpose: Coronavirus disease 2019 (COVID-19) pandemic led to a dramatic uptake of telemedicine in rheumatology. Given the impact of the pandemic on care delivery, we…
Abstract Number: 0753 • ACR Convergence 2021
Patient-Reported Burden of Adverse Drug Reactions Attributed to the Use of Adalimumab and Etanercept in Patients with Inflammatory Rheumatic Diseases
John Davelaar¹, Naomi Jessurun², Sander Tas³, Mike Nurmohamed⁴, Bart van den Bemt⁵ and Harald Vonkeman⁶, ¹Netherlands Pharmacovigilance Centre Lareb, Utrecht, Netherlands, ²Netherlands Pharmacovigilance Centre Lareb, 's-Hertogenbosch, Netherlands, ³Amsterdam UMC, locatie AMC, Utrecht, Netherlands, ⁴Reade; Amsterdam Rheumatology & Immunology Center, Amsterdam, Netherlands, ⁵Sint Maartenskliniek; Radboud University Medical Center, Ubbergen, Netherlands, ⁶Medisch Spectrum Twente; University of Twente, Enschede, Netherlands
Background/Purpose: Health care professionals tend to focus on adverse drug reactions (ADRs) with the highest clinical impact. Subsequently, ADRs with less obvious clinical impact but…
Abstract Number: 0824 • ACR Convergence 2021
Physicians’ Reasons for Prescribing Janus Kinase Inhibitors (JAKi) in Patients with Rheumatoid Arthritis, and Associated Alignment Between Physicians and Patients in a Real-world Clinical Setting
Peter C Taylor¹, Bruno Fautrel², Yves Piette³, Susana Romero-Yuste⁴, Jasper Broen⁵, Martin Welcker⁶, Elizabeth Holdsworth⁷, Monia Zignani⁸, Katrien Van Beneden⁸, Roberto Caporali⁹ and Rieke Alten¹⁰, ¹University of Oxford, Oxford, United Kingdom, ²Pitié Salpêtrière Hospital, APHP, Sorbonne Université, Paris, France, ³AZ Sint-Jan Brugge-Oostende AV, Bruges, Belgium, ⁴Complejo Hospitalario Universitario de Pontevedra, Pontevedra, Spain, ⁵Maxima Medical Centre, Veldhoven, Netherlands, ⁶MVZ für Rheumatologie, Planegg, Germany, ⁷Adelphi Real World, Bollington, United Kingdom, ⁸Galapagos, NV, Mechelen, Belgium, ⁹Policlinico S. Matteo University, Pavia, Italy, ¹⁰Schlosspark-Klinik University, Berlin, Germany
Background/Purpose: Shared decision making, a cornerstone of rheumatoid arthritis (RA) management1, allows physicians and their patients to make informed decisions about their treatment goals and…
Abstract Number: 1165 • ACR Convergence 2021
“What Matters”: Patient and Clinician Perspectives in Psoriatic Arthritis Care
Philip Mease¹, Dan Furst², Evan Siegel³, Vibeke Strand⁴, Melissa Mcilraith⁵, Elaine Husni⁶ and M. Cameron Hay⁷, ¹Swedish Medical Center/Providence St. Joseph Health and University of Washington, Seattle, WA, ²University of California Los Angeles, Los Angeles, CA, ³Arthritis and Rheumatism Associates, Potomac, MD, ⁴Stanford University School of Medicine, Portola Valley, CA, ⁵M.Mc. Consulting, Dallas, TX, ⁶Cleveland Clinic, Cleveland, OH, ⁷Miami University (Ohio), Oxford, OH
Background/Purpose: Recent psoriatic arthritis (PsA) treatment recommendations (1), highlight the importance of shared decision making; this ideally requires the clinician understands “what matters” to each…
Abstract Number: 1293 • ACR Convergence 2021
Studying Clusters of Patients with SLE According to Cognitive Function, Self-reported Outcomes, Disease Activity, and Clusters Dynamic over 1 Year
Ambika Gupta¹, Sindhu Johnson², Jiandong Su³, Kathleen Bingham⁴, Andrea Knight⁵, Juan Diaz-Martinez⁶, Mahta Kakvan³, Maria Tartaglia³, Lesley Ruttan⁴, Joan Wither³, May Choi⁷, Marvin Fritzler⁸, Dennisse Bonilla³, Dorcas Beaton⁹, Patricia Katz¹⁰, Robin Green³ and Zahi Touma¹, ¹University of Toronto, Mississauga, ON, Canada, ²University of Toronto, Toronto, ON, Canada, ³University Health Network, Toronto, ON, Canada, ⁴University of Toronto, University Health Network, Toronto, ON, Canada, ⁵Hospital for Sick Children, Toronto, ON, Canada, ⁶UHN, Toronto, ON, Canada, ⁷Brigham and Women's Hospital | University of Calgary, Calgary, AB, Canada, ⁸University of Calgary, Calgary, AB, Canada, ⁹Institute for Work & Health, Toronto, ON, Canada, ¹⁰University of California San Francisco, San Francisco, CA
Background/Purpose: Systemic Lupus Erythematosus (SLE) has a high prevalence of cognitive impairment (CI) (38% (95% confidence interval: 33-43%)). Patient reported outcomes (PROs) capture patient perceptions…
Abstract Number: 1598 • ACR Convergence 2021
Trends in Medication Interruptions and Associations with Disease Flares During a Public Health Crisis: Longitudinal Data from Patients with Autoimmune Rheumatic Diseases During the COVID-19 Pandemic
Tiffany Dharia¹, Michael George², SHILPA VENKATACHALAM³, Shubhasree Banerjee², Joshua Baker², David Curtis⁴, Maria I. Danila⁵, Kelly Gavigan⁴, Peter Merkel², Dianne Shaw⁶, Jeffrey Curtis⁷ and William Nowell⁴, ¹Hospital of the University of Pennsylvania, Philadelphia, ²University of Pennsylvania, Philadelphia, PA, ³Global Healthy Living Foundation, New York, NY, ⁴Global Healthy Living Foundation, Upper Nyack, NY, ⁵University of Alabama at Birmingham, Birmingham, AL, ⁶Vasculitis Foundation, Kansas City, MO, ⁷Division of Clinical Immunology and Rheumatology, Department of Medicine, Department of Epidemiology, University of Alabama at Birmingham, Birmingham, AL
Background/Purpose: The COVID-19 pandemic has had substantial impact on the care of patients with autoimmune rheumatic diseases (ARDs), resulting in frequent medication interruptions early in…
Abstract Number: 1894 • ACR Convergence 2021
Natural Language Processing Tool for Extraction of Patient-Reported Outcomes from a National Multi-Electronic Health Records Registry
Marie Humbert-Droz¹, Zara Izadi², Gabriela Schmajuk², Milena Gianfrancesco², Jinoos Yazdany² and Suzanne Tamang³, ¹Stanford University, Stanford, ²University of California San Francisco, San Francisco, CA, ³Stanford Center for Population Health Sciences, Redwood City, CA
Background/Purpose: Patient reported outcomes (PROs) are increasingly used to track disease activity and facilitate shared decision making in patients with RA. Assessments of disease activity…
Abstract Number: 0359 • ACR Convergence 2021
Patient Journey with Axial Spondyloarthritis: Critical Issues from the Patient Perspective. Results from the European Map of Axial Spondyloarthritis (EMAS)
Marco Garrido-Cumbrera¹, Denis Poddubnyy², Christine Bundy³, Laura Christen⁴, Raj Mahapatra⁵, Souzi Makri⁶, Carlos Jesús Delgado-Domínguez⁷, Sergio Sanz-Gomez⁷, Pedro Plazuelo-Ramos⁸ and Victoria Navarro-Compán⁹, ¹Health & Territory Research (HTR), University of Seville, Sevilla, Spain, ²Department of Rheumatology, Charité – Universitätsmedizin, Berlin, Germany, ³Cardiff University, Cardiff, Wales, United Kingdom, ⁴Novartis Pharma AG, Basel, Switzerland, ⁵Axial Spondyloarthritis International Federation (ASIF), London, United Kingdom, ⁶Cyprus League Against Rheumatism (CYPLAR), Limassol, Cyprus, ⁷Health & Territory Research (HTR), Universidad de Sevilla, Seville, Spain, ⁸Spanish Federation of Spondyloarthritis Associations (CEADE), Madrid, Spain, ⁹Rheumatology service, Hospital Universitario La Paz-IdiPaz, Madrid, Spain
Background/Purpose: The journey of axial spondyloarthritis (axSpA) for most patients is slow and arduous. The goal of this analysis is to assess the journey to…
Abstract Number: 0664 • ACR Convergence 2021
Which Attributes Are the Most and Least Important to Patients When Considering Gout Flare Burden over Time? A Best-worst Scaling Choice Study
Jeremy Holyer¹, William Taylor², Angelo Gaffo³, Graham Hosie¹, Anne Horne¹, Borislav Mihov¹, Isabel Su¹, Gregory Gamble¹, Nicola Dalbeth¹ and Sarah Stewart¹, ¹University of Auckland, Auckland, New Zealand, ²University of Otago Wellington, Auckland, New Zealand, ³University of Alabama at Birmingham Medical Centre, Birmingham, AL
Background/Purpose: Several factors contribute to the patient experience of gout flares, including pain intensity, duration, frequency, and disability. It is unknown which of these factors…
Abstract Number: 0754 • ACR Convergence 2021
Bridging the Gap Between Patient-Reported Outcomes and Disease-Related Outcomes in Lupus – a Feasibility Study
Shivani Garg¹ and Christie Bartels², ¹UW Madison, Madison, WI, ²University of Wisconsin School of Medicine and Public Health, Madison, WI
Background/Purpose: Patients with SLE have significantly worse health-related quality of life (QOL) at an earlier age compared to patients with other chronic diseases. This highlights…

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