Abstracts tagged "Patient reported outcomes"

Abstract Number: 0799 • ACR Convergence 2021
Relationships of Rheumatology Care and Patient Experiences to Rheumatoid Arthritis Remission
Kelly O'Neill¹, Kathryne Marks², Pamela Sinicrope³, Cynthia Crowson⁴, Elena Myasoedova³ and John Davis³, ¹Rheumatoid Patient Foundation, Lutz, FL, ²Rheumatoid Patient Foundation, Boston, MA, ³Mayo Clinic, Rochester, MN, ⁴Mayo Clinic, Eyota, MN
Background/Purpose: Remission is a well-established optimal outcome in rheumatoid arthritis (RA) treatment, yet a minority of patients reach this goal. There is not one recognized…
Abstract Number: 1156 • ACR Convergence 2021
Impact of Treatment Experience on Patient Preferences and Disease Burden in Psoriatic Arthritis: Results from a Rheumatology Patient Research Registry
Jessica Walsh¹, Kelley Myers², Carol Mansfield², William Tillett³, Peter Nash⁴, Colton Leach², William Nowell⁵, Kelly Gavigan⁵, Patrick Zueger⁶, Erin McDearmon-Blondell⁷ and Alexis Ogdie-Beatty⁸, ¹Salt Lake City Veteran Affairs Medical Center (VAMC)/University of Utah Hospital, Salt Lake City, UT, ²RTI Health Solutions, Research Triangle Park, NC, ³Royal National Hospital for Rheumatic Diseases, Bath, United Kingdom, ⁴Griffith University, Brisbane, Australia, ⁵Global Healthy Living Foundation, Upper Nyack, NY, ⁶AbbVie Inc., Mettawa, IL, ⁷AbbVie Inc., Elmhurst, IL, ⁸University of Pennsylvania, Philadelphia, PA
Background/Purpose: To optimize patient-provider shared decision-making, it is important to understand patients’ experience with psoriatic arthritis (PsA) and its treatment, including how treatment experience may…
Abstract Number: 1279 • ACR Convergence 2021
Impact of Active Lupus Nephritis in Patient-Reported Outcomes from a Latin American, Multicenter Lupus Cohort
Romina Nieto¹, Eduardo Ferreira Borba², Eugenia Settecasse³, Diana Fernandez-Avila⁴, Laura Maurelli⁵, Carla Gobbi⁶, Verónica Saurit⁷, Fernando Arizpe⁸, Julieta Daniele⁹, Maria Constanza Bertolaccini¹⁰, Eduardo Kerzberg¹¹, María de los Ángeles Gargiulo¹², Anabella Rodriguez¹³, Ana Carolina Londe¹⁴, Vitalina Sousa Barbosa¹⁵, Andrese Aline Gasparin¹⁶, Carolina Albanez A Cunha Andrade¹⁷, Luciana Parente Costa Seguro¹⁸, Lucas Victoria de Oliveira Martins¹⁹, Oscar Neira²⁰, Carolina Llanos²¹, Loreto Massardo²², Antonio Iglesias²³, Ivana Nieto Aristizábal²⁴, Gloria Vasquez²⁵, Paul Mendez-Patarroyo²⁶, Lizeth de la Hoz Rueda²³, José Martínez Pérez²⁷, Reyna Sánchez Briones²⁸, Mario Pérez Cristóbal²⁹, Eduardo Martin-Nares³⁰, Yaneli Juárez-Vicuña³¹, Yelitza Gonzalez Bello³², Jorge González García³³, Dionicio Galarza-Delgado³⁴, Marcos Vázquez³⁵, Patricia Langjarh³⁵, Magaly Alva Linares³⁶, Cristina Reategui-Sokolova³⁷, Armando Calvo Quirós³⁸, Edral Rodriguez³⁹, Ricardo Robaina⁴⁰, Martín Rebella⁴¹, Graciela Alarcn⁴², Ashley Orillion⁴³, Chetan Karyekar⁴⁴, Federico Zazzetti⁴⁵ and Guillermo Pons-Estel⁴⁶, ¹Hospital Provincial de Rosario, Rosario, Argentina, ²Rheumatology Division, Hospital das Clinicas HCFMUSP, Faculdade de Medicina, Universidade de São Paulo, São Paulo, SP, Brazil, ³Instituto de Investigaciones Teóricas y Aplicadas. Facultad de Ciencias Económicas y Estadistica. Universidad Nacional de Rosario, Rosario, Argentina, ⁴Hospital Italiano de Buenos Aires, Buenos Aires, Argentina, ⁵Hospital Italiano de Córdoba, Córdoba, Argentina, ⁶Hospital Córdoba, Córdoba, Argentina, ⁷Hospital Privado Universitario de Córdoba, Córdoba, ⁸Hospital HIGA San Martín, La Plata, Argentina, ⁹Sanatorio Británico, Rosario, Argentina, ¹⁰Hospital Padilla, San Miguel de Tucumán, Argentina, ¹¹Hospital General de Agudos J.M. Ramos Mejía, Buenos Aires, Argentina, ¹²Instituto de Investigaciones Médicas Alfredo Lanari, Buenos Aires, Argentina, ¹³CEMIC, Buenos Aires, Argentina, ¹⁴Universidade Estadual de Campinas, Faculdade de Ciencias Médicas, São Paulo, Brazil, ¹⁵Hospital das Clinicas, Univerisad Federal de Goias, Goias, Brazil, ¹⁶Hospital de Clínicas de Porto Alegre, Porto Alegre, Brazil, ¹⁷Universidad Federal de Pernambuco, Recife, Brazil, ¹⁸Hospital Das Clinicas da Faculdade de Medicina da USP, São Paulo, Brazil, ¹⁹Universidad Federal São Paulo, São Paulo, Brazil, ²⁰Hospital del Salvador, Santiago, Chile, ²¹Facultad de Medicina, Pontificia Universidad Catolica de Chile, Santiago, Chile, ²²Universidad San Sebastián, Santiago, Chile, ²³Clínica de la Costa Ltda., Barranquilla, Colombia, ²⁴Fundación Valle del Lili, Cali, Colombia, ²⁵Division of rheumatology, Universidad de Antioquia, Medellin, Colombia, ²⁶Reumavance Group, Rheumatology section, Department of Internal Medicine, Fundación Santa Fe de Bogotá University Hospital; Department of Internal Medicine, School of Medicine, Universidad de Los Andes, Bogota, Colombia, ²⁷Hospital Luis Vernaza, Guayaquil, Ecuador, ²⁸Centro Médico La Raza, Ciudad de México, Mexico, ²⁹Centro Médico Nacional Siglo XXI, Ciudad de México, Mexico, ³⁰Department of Immunology and Rheumatology, Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán, Mexico City, Mexico, ³¹Instituto Nacional de Cardiología Ignacio Chávez, Ciudad de México, Mexico, ³²Centro de Estudios de investigación Básica y Clínica S.C, Guadalajara, Mexico, ³³Hospital Central Dr. Ignacio Morones Prieto, San Luís Potosí, Mexico, ³⁴Hospital Universitario "Dr Jose E. Gonzalez", Monterrey, Mexico, ³⁵Hospital de Clínicas I, Asunción, Paraguay, ³⁶Hospital Nacional Edgardo Rebagliatti Martins, Lima, Peru, ³⁷Hospital Guillermo Almenara Irigoyen, Lima, Peru, ³⁸Hospital Cayetano Heredia, Lima, Peru, ³⁹Hospital Docente Padre Billini, Santo Domingo, Dominican Republic, ⁴⁰Clínica Médica C, Hospital de Clínicas, UDELAR, Montevideo, Uruguay, ⁴¹Unidad de Enfermedades Autoinmunes Sistémicas de Médica Uruguay Corporación de Asistencia Médica (MUCAM); Unidad de Enfermedades Autoinmunes Sistémicas del Hospital de Clínicas, Facultad de Medicina, Universidad de la República, Montevideo, Uruguay, ⁴²University of Alabama at Birmingham, Birmingham, AL, ⁴³Global Commercial Strategic Organisation, Johnson and Johnson, Horsham, PA, ⁴⁴Janssen R&D, Spring House, PA, ⁴⁵Medical Affairs, Jan-Cil Argentina, Buenos Aires, Argentina, ⁴⁶Grupo Oroño. Centro Regional de Enfermedades Autoinmunes y Reumaticas (GO-CREAR), Rosario, Argentina
Background/Purpose: Systemic lupus erythematosus (SLE) is an autoimmune disease characterized by multiple and heterogeneous clinical manifestations that may negatively affect these patients’ quality of life…
Abstract Number: 1592 • ACR Convergence 2021
ACT for Lupus: Pilot Study of a Novel Acceptance and Commitment Therapy (ACT) Online Program to Support Patients with Lupus During the COVID-19 Pandemic
Tessa Englund¹, Saira Sheikh², Becki Cleveland¹, Emily McCormick¹, Crystal Schiller³ and Teresa Dickson¹, ¹Thurston Arthritis Research Center, University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, NC, ²University of North Carolina Thurston Arthritis Research Center, and Department of Medicine, Division of Rheumatology, Allergy and Immunology, University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, NC, ³University of North Carolina at Chapel Hill, Chapel Hill, NC
Background/Purpose: Systemic lupus erythematosus (SLE) is a chronic disease associated with significant symptom burden, including fatigue, anxiety, depression, pain, and negative impacts on health-related quality…
Abstract Number: 1788 • ACR Convergence 2021
Improving Care and Capacity Through Capturing and Recording Patient Reported Outcomes with Digital Solutions in Spondyloarthritis
Antoni Chan¹, Kathryn Rigler¹ and Liz van Rossen², ¹Royal Berkshire NHS Foundation Trust, Reading, United Kingdom, ²East Kent NHS Foundation Trust, Kent, United Kingdom
Background/Purpose: Patient-reported outcomes (PROs) have always been at the forefront for the assessment of spondyloarthritis (SpA) which includes axial Spa (axSpA) and psoriatic arthritis (PsA).…
Abstract Number: 0256 • ACR Convergence 2021
Consensus Approach to a Treat to Target Strategy in Juvenile Idiopathic Arthritis Care: Report from the 2020 Pediatric Rheumatology Care and Outcomes Improvement Network Consensus Conference
Tala El Tal¹, Meghan Ryan², Brian Feldman³, Catherine Bingham⁴, Jon Burnham⁵, Michelle Batthish⁶, Danielle Bullock⁷, Kerry Ferraro⁸, Mileka Gilbert⁹, Beth Gottlieb¹⁰, Julia Harris¹¹, Melissa Hazen¹², Ronald Laxer¹³, Tzielan Lee¹⁴, Daniel Lovell¹⁵, Melissa Mannion¹⁶, Laura Noonan¹⁷, Edward Oberle¹⁸, Anne Paul¹⁹, Janalee Taylor²⁰, Jennifer Weiss²¹, Cagri Yildirim-Toruner²² and Esi Morgan²³, ¹University of Toronto/Hospital for Sick Children, Toronto, ON, Canada, ²University of Minnesota, Vadnais Heights, MN, ³The Hospital for Sick Children, Toronto, ON, Canada, ⁴Penn State Children's Hospital, Allentown, PA, ⁵Children's Hospital of Philadelphia, Philadelphia, PA, ⁶McMaster University, Hamilton, ON, Canada, ⁷University of Minnesota, Minneapolis, MN, ⁸Pediatric Rheumatology Care and Outcomes Improvement Network, Cincinnati, OH, ⁹Medical University of South Carolina, Charleston, SC, ¹⁰Cohen Children's Medical Center, Lake Success, NY, ¹¹Children's Mercy Kansas City, Overland Park, KS, ¹²Boston Children's Hospital, Boston, MA, ¹³SickKids, Toronto, ON, Canada, ¹⁴Stanford University School of Medicine, Palo Alto, CA, ¹⁵Cincinnati Children’s Hospital Medical Center, University of Cincinnati, Cincinnati, OH, ¹⁶University of Alabama at Birmingham, Birmingham, AL, ¹⁷Levine Children's Hospital/Carolinas Healthcare System, Charlotte, NC, ¹⁸Nationwide Children's Hospital, Columbus, OH, ¹⁹Cincinnati Children's Hospital Medical Centre, Cincinnati, OH, ²⁰Cincinnati Children's Hospital, Cincinnati, OH, ²¹Hackensack University Medical Center, Hackensack, NJ, ²²Texas Children's Hospital/Baylor College of Medicine, Houston, TX, ²³Seattle Children's Hospital, Seattle, WA
Background/Purpose: Treat to target (T2T) is a strategy of adjusting treatment until a therapeutic target is reached. There is growing evidence supporting the use and…
Abstract Number: 0607 • ACR Convergence 2021
Validation Studies of Rheumatoid Arthritis Patient-Reported Outcome Measures in Diverse Populations at Risk for Inequity: A Systematic Review
Cheryl Barnabe¹, Aimee Wattiaux², Jennifer Petkovic³, Dorcas Beaton⁴, Beverley Shea³, Regina Greer-Smith⁵, Jennifer Humphreys⁶, Christie Bartels⁷, Peter Tugwell³ and Valerie Umaefulam¹, ¹University of Calgary, Calgary, AB, Canada, ²University of Wisconsin, Madison, WI, ³University of Ottawa, Ottawa, ON, Canada, ⁴University of Toronto, Toronto, ON, Canada, ⁵Healthcare Research Associates, Hazel Crest, IL, ⁶University of Manchester, Manchester, United Kingdom, ⁷University of Wisconsin School of Medicine and Public Health, Madison, WI
Background/Purpose: Existing patient-reported outcome measures (PROMs) in rheumatoid arthritis (RA) may be limited in their applicability to populations that experience inequities. We conducted a systematic…
Abstract Number: 0751 • ACR Convergence 2021
Are Current Patient Reported Outcomes Instruments Optimized to Capture the Entire Patient Experience?
Philip Mease¹, Vibeke Strand², Dan Furst³, Evan Siegel⁴, Melissa Mcilraith⁵, Elaine Husni⁶ and M. Cameron Hay⁷, ¹Swedish Medical Center/Providence St. Joseph Health and University of Washington, Seattle, WA, ²Stanford University School of Medicine, Portola Valley, CA, ³University of California Los Angeles, Los Angeles, CA, ⁴Arthritis and Rheumatism Associates, Potomac, MD, ⁵M.Mc. Consulting, Dallas, TX, ⁶Cleveland Clinic, Cleveland, OH, ⁷Miami University (Ohio), Oxford, OH
Background/Purpose: Psoriatic Arthritis (PsA) affects multiple attributes of patient health; to assess treatment effectiveness a compilation of Patient Reported Outcomes (PRO) have been utilized. While…
Abstract Number: 0807 • ACR Convergence 2021
Baseline Coping Strategies as Predictors of Outcomes in Patients with Early-onset Rheumatoid Arthritis (RA)
Zafer Akman¹, Gilles Boire², Nathalie Carrier³, Sophie Roux⁴, Ariel Masetto², Artur deBrum Fernandes⁵, Patrick Liang², Patricia L Dobkin⁶ and Allard-Chamard Hugues⁷, ¹Istanbul University Cerrahpasa, İstanbul, Turkey, ²Universite de Sherbrooke, Sherbrooke, QC, Canada, ³CIUSSS de l'Estrie - CHUS, Sherbrooke, QC, Canada, ⁴Université de Sherbrooke, Sherbrooke, QC, Canada, ⁵Universite De Sherbrooke, Fleurimont, QC, Canada, ⁶McGill University, Montréal, QC, Canada, ⁷Universit de Sherbrooke, Sherbrooke, QC, Canada
Background/Purpose: Patients recently diagnosed with RA employ various coping strategies. We aimed to describe these strategies over time and determine if specific strategies impacted patient…
Abstract Number: 1158 • ACR Convergence 2021
Resistance of Patients with Rheumatoid Arthritis to Changing Therapy: A 15-year Follow-up
Kaleb Michaud¹, Sofia Pedro², Victoria Jasion³, Holly Budlong⁴, Jessica Suboticki⁵, Frederick Wolfe⁶ and Patricia Katz⁷, ¹University of Nebraska Medical Center, Omaha, NE, ²Forward, The National Databank for Rheumatic Diseases, Wichita, KS, ³AbbVie, Overland Park, KS, ⁴AbbVie, Minneapolis, MN, ⁵AbbVie Inc., North Chicago, IL, ⁶National Data Bank for Rheumatic Diseases, Wichita, KS, ⁷University of California San Francisco, San Francisco, CA
Background/Purpose: Treatment options for rheumatoid arthritis (RA) have increased dramatically over the past 15 years. The objective of this study was to investigate whether willingness…
Abstract Number: 1281 • ACR Convergence 2021
Longitudinal Association of Baseline Frailty with Patient-Reported Outcome Measures
Sarah Lieber¹, Musarrat Nahid², Mangala Rajan², Medha Barbhaiya¹, Lisa Sammaritano¹, Robyn Lipschultz¹, Myriam Lin¹ and Lisa Mandl¹, ¹Hospital for Special Surgery, New York, NY, ²Weill Cornell Medicine, New York, NY
Background/Purpose: Frailty has been associated with disability and mortality in systemic lupus erythematosus (SLE). While frailty is known to be associated with worse patient-reported outcome…
Abstract Number: 1593 • ACR Convergence 2021
Perceived Impact of the COVID-19 Pandemic on Physical Activity Among Adult Patients with Rheumatologic Disease
Teresa Dickson¹, Tessa Englund¹, Emily McCormick¹, Becki Cleveland¹, Kelli Allen², Andres Santana¹, Shruti SaxenaBeem¹, Julie Walker¹ and Saira Sheikh³, ¹Thurston Arthritis Research Center, University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, NC, ²Thurston Arthritis Research Center, University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, NC and Health Services Research & Development, Durham VA Health Care System, Durham, NC, ³University of North Carolina Thurston Arthritis Research Center, and Department of Medicine, Division of Rheumatology, Allergy and Immunology, University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, NC
Background/Purpose: The COVID-19 pandemic has triggered nationwide disruptions that limit opportunities for physical activity (PA). Addressing suboptimal levels of PA is important for disease management…
Abstract Number: 1838 • ACR Convergence 2021
Further Construct Validation of the
Julia Spierings¹, Voon Ong² and Christopher Denton³, ¹University Medical Center Utrecht, Utrecht, Netherlands, ²University College London Medical School Royal Free Campus, London, United Kingdom, ³University College London Division of Medicine, Centre for Rheumatology and Connective Tissue Diseases, London, United Kingdom
Background/Purpose: Evaluation of skin is central in clinical management of systemic sclerosis (SSc). Due to the COVID-19 pandemic remote consultations were widely implemented, which inevitably…
Abstract Number: 0296 • ACR Convergence 2021
The Impact of Delayed Primary Sjögren’s Syndrome Diagnosis on Patient Outcomes: A Real-World Survey in the US
Briana Ndife¹, Sophie Barlow², Megan Hughes² and Nicola Booth², ¹Novartis, East Hanover, NJ, ²Adelphi Real World, Bollington, United Kingdom
Background/Purpose: Diagnosis of primary Sjögren’s syndrome (pSS) is challenging due to the disease’s phenotypic heterogeneity. pSS patients frequently experience a prolonged period between symptomatic onset…
Abstract Number: 0624 • ACR Convergence 2021
Validation of a Self-reported Measure of Extent and Reasons for Nonadherence in SLE
Kai Sun¹, Amanda Eudy², D. Ryan Anderson³, Rebecca Sadun², Lisa Criscione-Schreiber¹, Jayanth Doss², Jennifer Rogers¹, Theresa Coles², Corrine Volis⁴ and Megan Clowse⁵, ¹Duke University School of Medicine, Durham, NC, ²Duke University, Durham, NC, ³Duke University Medical Center, Durham, NC, ⁴University of Wisconsin School of Medicine and Public Health, Madison, WI, ⁵Duke University, Chapel Hill, NC
Background/Purpose: Medication nonadherence is common in SLE and leads to increased hospitalizations, morbidity, and mortality. To better recognize nonadherence and address adherence barriers, there is…

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