Abstracts tagged "Patient reported outcomes"

Abstract Number: 2455 • ACR Convergence 2024
Improvement Across Multi-organ Domains and Patient Reported Outcomes in Refractory Juvenile-Onset Systemic Sclerosis (jSSc) up to 4 Years After Autologous Stem Cell Transplantation (ASCT)
Jonathan Li¹, Paulina Horvei², Franziksa Rosser³, Kirsten Rose-Felker⁴, Vibha Sood⁵, Adam Olson⁶, Vickie Vandergrift⁷, Nicole Hogue², Lauren Farver⁸, Devin Mcguire⁹, Haley Havrilla⁷, Jessie Alexander¹⁰, Shawna McIntyre², Paul Szabolcs² and Kathryn Torok¹¹, ¹Division of Rheumatology, Department of Pediatrics, UPMC Children’s Hospital of Pittsburgh, Pittsburgh, PA, USA, Pittsburgh, PA, ²Division of Blood and Marrow Transplantation and Cellular Therapies, Department of Pediatrics, UPMC Children’s Hospital of Pittsburgh, Pittsburgh, PA, USA, Pittsburgh, ³Division of Pulmonology Medicine, Department of Pediatrics, UPMC Children’s Hospital of Pittsburgh, Pittsburgh, PA, USA, Pittsburgh, PA, ⁴Division of Cardiology, Department of Pediatrics, UPMC Children’s Hospital of Pittsburgh, Pittsburgh, PA, USA, Pittsburgh, ⁵Division of Pediatric Gastroenterology, Hepatology and Nutrition, Department of Pediatrics, UPMC Children’s Hospital of Pittsburgh, Pittsburgh, PA, USA, Pittsburgh, ⁶Department of Radiation Oncology, UPMC Children’s Hospital of Pittsburgh, Pittsburgh, PA, USA, Pittsburgh, ⁷Division of Rheumatology, Scleroderma Center, Department of Pediatrics, UPMC Children’s Hospital of Pittsburgh, Pittsburgh, PA, USA, Pittsburgh, ⁸Department of Physical Therapy, UPMC Children’s Hospital of Pittsburgh, Pittsburgh, PA, USA, Pittsburgh, ⁹Pediatric Behavioral Health, University of Pittsburgh, Pittsburgh, PA, USA, Pittsburgh, ¹⁰Pediatric Bone Marrow Transplant and Cellular Therapies, Stanford Children's Hospital, Palo Alto, CA, USA, Pittsburgh, ¹¹Division of Rheumatology, Scleroderma Center, Department of Pediatrics, UPMC Children’s Hospital of Pittsburgh, Pittsburgh, PA, USA, Pittsburgh, PA
Background/Purpose: Juvenile-onset systemic sclerosis (jSSc) is a systemic autoimmune disease characterized by vasculopathy and multiorgan fibrosis leading to significant morbidity and early mortality. Autologous stem…
Abstract Number: 0362 • ACR Convergence 2024
Development of a Theory-based Digital Messaging Program to Reduce Fatigue in Systemic Lupus Erythematosus
Anna Deck¹, Paula Caras², Kiran Singh³, Monique Gore-Massy⁴, Faye Chiu⁵, Sara Folta⁶ and Shanthini Kasturi³, ¹Tufts University School of Medicine, Portland, ME, ²Tufts University School of Medicine, Boston, MA, ³Tufts Medical Center, Boston, MA, ⁴Lupus Foundation of America, New Jersey, ⁵N/A, New York City, NY, ⁶Tufts University/Tufts University Friedman School of Nutrition, Boston, MA
Background/Purpose: Fatigue is the single most prevalent symptom of systemic lupus erythematous (SLE), affecting 80-90% of patients, and is often refractory to pharmacologic therapy. Non-pharmacologic…
Abstract Number: 0601 • ACR Convergence 2024
Early Improvement of Pain, Long-Term Disease Control, and Quality of Life Outcomes in Patients with Psoriatic Arthritis Treated with Upadacitinib
Peter C. Taylor¹, Lihi Eder², Yael Klionsky³, Fabian Proft⁴, Thomas Iyile⁵, Erin Mancl⁶, Priscila Magalhaes Reis Nakasato⁷, Xiaolan Ye⁸, Limei Zhou⁶ and Philip Mease⁹, ¹University of Oxford, Oxford, United Kingdom, ²University of Toronto, Women’s College Hospital and Department of Medicine, Toronto, ON, Canada, ³Division of Rheumatology, Department of Medicine, Wake Forest School of Medicine, Winston-Salem, NC, ⁴Charité – Universitätsmedizin Berlin, corporate member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Berlin, Germany, ⁵AbbVie Inc., hyattsville, MD, ⁶AbbVie Inc., North Chicago, IL, ⁷AbbVie Inc., Randolph, NJ, ⁸AbbVie Inc., Mettawa, IL, ⁹Swedish Medical Center/Providence St. Joseph Health; University of Washington School of Medicine, Seattle, WA

Background/Purpose: Severe musculoskeletal manifestations of PsA, particularly joint pain, can result in reduced physical function, decreased quality of life, and progressive and irreversible joint damage.1,2…
Abstract Number: 1040 • ACR Convergence 2024
Clinic Personnel Perceptions Were Favorable for the Implementation of a Patient Decision-Aid for a Diverse Systemic Lupus Erythematosus Population: A Study in 15 U.S. Rheumatology Clinics
Jasvinder Singh¹, Larry Hearld², Walter Chatham³, Sonali Narain⁴, Narender Annapureddy⁵, Diane Kamen⁶, Kimberly Trotter⁷, vikas Majithia⁸, Cathy Lee Ching⁹, Zineb Aouhab¹⁰, Swamy Venuturupalli¹¹, Daniel Wallace¹², rosalind Ramsey-Goldman¹³, Alfred Kim¹⁴, Maureen McMahon¹⁵, S. Sam Lim¹⁶, Kalpana Bhairavarasu¹⁷, Alexa Meara¹⁸ and Kenneth Kalunian¹⁹, ¹Baylor College of Medicine, Birmingham, AL, ²University of Alabama at Birmingham (UAB), Birmingham, AL, ³University of Nevada, Las Vegas, Las Vegas, NV, ⁴Northwell Health, Great Neck, NY, ⁵Vanderbilt University Medical Center, Nashville, TN, ⁶Medical University of South Carolina, Charleston, SC, ⁷University of Chicago, Chicago, IL, ⁸University of Missisippi Medical Center (UMC), Jackson, MS, ⁹UMMC, Jackson, MS, ¹⁰Loyola University Medical Center, Oak Brook, IL, ¹¹Attune Health, Beverly Hills, CA, ¹²Cedars Sinai Medical Center, Studio City, CA, ¹³Northwestern University, Chicago, IL, ¹⁴Washington University School of Medicine, Division of Rheumatology, Department of Medicine, St Louis, MO, ¹⁵UCLA David Geffen School of Medicine, Los Angeles, CA, ¹⁶Emory University, Atlanta, GA, ¹⁷Baylor College of Medicine, Sugar Land, TX, ¹⁸The Ohio State University Wexner Medical Center, COLUMBUS, OH, ¹⁹University of California San Diego, La Jolla, CA
Background/Purpose: To understand clinic personnel feedback regarding the implementation of a self-administered patient decision-aid (PtDA) for lupus in regular, outpatient rheumatology clinics.Methods: We provided self-administered…
Abstract Number: 1254 • ACR Convergence 2024
The Impact of Eosinophilic Granulomatosis with Polyangiitis on the Health-Related Quality of Life of Patients and Their Ability to Work: Evidence from a Real-World Survey in Clinical Practice
Robert Spiera¹, Paul Dolin², Anat Shavit², Jennifer Rowell³, Chris Edmonds⁴, Josefine Persson⁵, Danuta Kielar⁶, Daniel Mascia⁷, James Siddall⁷, Tia Pennant⁷, Fritha Hennessy⁷ and Stephanie Y. Chen⁸, ¹Scleroderma, Vasculitis, and Myositis Center, Hospital for Special Surgery, Weill Cornell Medical College, New York, NY, ²BioPharmaceuticals Medical, AstraZeneca, Cambridge, United Kingdom, ³Market Access and Pricing, AstraZeneca, Cambridge, England, United Kingdom, ⁴Market Access and Pricing, AstraZeneca, Gaithersburg, MD, ⁵Market Access and Pricing, AstraZeneca, Gothenburg, Sweden, ⁶Biopharmaceuticals Medicine, AstraZeneca, Cambridge, United Kingdom, ⁷Adelphi Real World, Bollington, United Kingdom, ⁸BioPharmaceuticals Medical, AstraZeneca, Gaithersburg, MD
Background/Purpose: Eosinophilic granulomatosis with polyangiitis (EGPA) is a rare anti-neutrophil cytoplasmic antibody-associated vasculitis that confers significant disease burden. This real-world study described the impact of…
Abstract Number: 1402 • ACR Convergence 2024
Addressing Unmet Needs in Cannabis and Hemp by Improving Knowledge and Data Collection
Jahan Marcu¹, Philip Molloy², Kayla Pray³ and Teresa Simon⁴, ¹Marcu Enterprises/ Physicians Research Center, Jersey City, NJ, ²Physicians Research Center,LLC, Carver, MA, ³Physicians Research Center,LLC, Farmingdale, NJ, ⁴Physicians Research Center,LLC, Toms River, NJ
Background/Purpose: Cannabis and its derivatives are increasingly integrated into treatments for rheumatic diseases, yet there is a significant lack of evidence and systematic data collection…
Abstract Number: 1974 • ACR Convergence 2024
The Impact of Concomitant Shoulder Osteoarthritis in Polymyalgia Rheumatica
Patricia Harkins¹, Sharon Cowley², Robert Harrington³, David Kane⁴ and Richard Conway⁵, ¹Trinity College Dublin, Dublin 8, Dublin, Ireland, ²Tallaght University Hospital, Dublin, Dublin, Dublin, Ireland, ³St. James's Hospital, Dublin, Dublin, Ireland, ⁴Tallaght University Hospital & Trinity College Dublin, D24, Ireland, ⁵Trinity College Dublin, Dublin, Ireland
Background/Purpose: Polymyalgia rheumatica (PMR) is an inflammatory rheumatic disease of the shoulder and pelvic girdle. In the majority of centres, baseline shoulder radiograph forms part…
Abstract Number: 2172 • ACR Convergence 2024
A Novel Cohort to Assess Longitudinal Glucocorticoid Toxicity in Individuals with Rheumatic Diseases: Objectives, Design, and Initial Baseline Characteristics
Naomi Patel¹, Miao Lin¹, Bohang Jiang¹, Isha Jha¹, Grace McMahon¹, Aubree E. McMahon¹, Yuqing Zhang², Hyon K. Choi³, Zachary Wallace⁴ and John Stone⁵, ¹Massachusetts General Hospital, Boston, MA, ²Division of Rheumatology, Allergy, and Immunology, Department of Medicine, Massachusetts General Hospital, Harvard Medical School; The Mongan Institute, Massachusetts General Hospital, Harvard Medical School, Boston, MA, ³Massachusetts General Hospital, Lexington, MA, ⁴Massachusetts General Hospital, Newton, MA, ⁵Massachusetts General Hospital , Harvard Medical School, Concord, MA
Background/Purpose: Glucocorticoids (GC) are a backbone of treatment regimens for many rheumatic diseases despite their association with toxicities that contribute to excess morbidity and mortality.…
Abstract Number: 2460 • ACR Convergence 2024
Severe Gastrointestinal Involvement in Systemic Sclerosis: A New “Transversal” Subset of Disease to Be Prioritised for Intervention Trials
Marco Minerba¹, Riccardo Bixio², Seda Colak³, Stefano Di Donato⁴, Lesley-Anne Bissell⁵ and Francesco Del Galdo⁶, ¹1. Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, 2. NIHR Leeds Biomedical Research Centre, United Kingdom, Leeds, United Kingdom, ²University of Verona, Verona, Verona, Italy, ³Gulhane Training and Research Hospital, Ankara, Turkey, ⁴Leeds Institute of Rheumatic and Musculoskeletal Medicine, Chapel Allerton Hospital, Leeds, UK, Leeds, United Kingdom, ⁵Leeds Teaching Hospitals NHS Trust, Leeds, United Kingdom, ⁶University of Leeds, Leeds, United Kingdom
Background/Purpose: Gastrointestinal (GI) involvement is the most frequent internal complication of systemic sclerosis (SSc) and, when severe, it has a major influence on patient function.…
Abstract Number: 0365 • ACR Convergence 2024
Patients’ Behaviors and Beliefs Around Dietary Changes Among a Cohort of Patients with Rheumatic Disease
Aaron Stubbs, Deeba Minhas, Anne Arewasikporn and Andrew Schrepf, University of Michigan, Ann Arbor, MI
Background/Purpose: Dietary interventions may help manage inflammation and are considered for adjunctive treatment of rheumatic diseases. Our study aimed to explore patients' behaviors and beliefs…
Abstract Number: 0614 • ACR Convergence 2024
Bridging the Gap Between Patient’s Perception on Quality of Life and Disease Activity and Damage in Systemic Lupus Erythematous Patient
Background/Purpose: Improving quality of life (QoL) is one of the key targets when treating systemic lupus erythematosus (SLE) patients. The Lupus impact Tracker (LIT) is…
Abstract Number: 1042 • ACR Convergence 2024
Identifying Patient Priorities for Patient-Reported Outcome Measures in Rheumatoid Arthritis: A Modified Delphi Consensus Study
Racheal Githumbi¹, Steven Katz², Ania Kania-Richmond¹, Kim Giroux³, Yvonne Wallace³, Cheryl Barnabe¹, Glen Hazlewood¹, C. Allyson Jones², Amanda Steiman⁴, Anshula Ambasta¹, Diane Lacaille⁵, Elaine Yacyshyn², Jessica Widdifield⁶, Natasha Gakhal⁷, Tyler Williamson¹ and Claire Barber¹, ¹University of Calgary, Calgary, AB, Canada, ²University of Alberta, Edmonton, AB, Canada, ³Patient Partner, Calgary, AB, Canada, ⁴Sinai Health System, Toronto, ON, Canada, ⁵Arthritis Research Canada, University of British Columbia, Vancouver, BC, Canada, ⁶Sunnybrook Research Institute / ICES / UofT Institute of Health Policy, Management & Evaluation, Toronto, ON, Canada, ⁷Women's College Hospital, Toronto, ON, Canada
Background/Purpose: Patient-reported outcome measures (PROMs) are essential tools for prioritizing patient-centric care and enhancing health system-performance measurement in rheumatology. Effective use of PROMs collected in…
Abstract Number: 1255 • ACR Convergence 2024
Development and Validation of a Brief Measure of Uncertainty Among Patients with Vasculitis and Other Rheumatic Diseases
Caleb Bolden¹, Claire Cook¹, Lucy Finkelstein-Fox¹, Xiaoqing Fu¹, Flavia Castelino¹, Hyon K. Choi², Cory Perugino¹, John Stone³, Elyse Park¹, Christine Yeung⁴, Corrie Stone-Johnson⁵, Stacey Ivits⁶, Peter Merkel⁷, Daniel Hall¹ and Zachary Wallace⁸, ¹Massachusetts General Hospital, Boston, MA, ²Massachusetts General Hospital, Lexington, MA, ³Massachusetts General Hospital , Harvard Medical School, Concord, MA, ⁴University of Pennsylvania, Philadelphia, ⁵University at Buffalo, Buffalo, NY, ⁶Stacey Ivits MSW RSW Counselling Services, Ontario, ⁷Division of Rheumatology, Department of Medicine, University of Pennsylvania, Philadelphia, PA, ⁸Massachusetts General Hospital, Newton, MA
Background/Purpose: Patients with rheumatic diseases face illness-related uncertainty managing ambiguous and unpredictable symptoms. Such uncertainty is associated with decreased emotional and physical well-being (Wallace et…
Abstract Number: 1411 • ACR Convergence 2024
Impact of Patient and Physician Alignment on Sjögren’s Disease Severity, a Real-World Survey on Patients’ Clinical Outcomes and Health-Related Quality of Life
Wan Fai Ng¹, Coralie Bouillot², NICOLA MASSEY³, Megan Hughes³, Victoria Barton³, Giorgio Castellano³, Ana Barat⁴, Gayle Kenney⁵ and Jessica Marvel⁶, ¹Department of Rheumatology, Newcastle University, & HRB Clinical Research Facility, University College Cork, Newcastle upon Tyne, United Kingdom, ²Sjögren Europe, Switzerland, Switzerland, ³ADELPHI REAL WORLD, BOLLINGTON, United Kingdom, ⁴Novartis Ireland Ltd, Dublin, Ireland, ⁵Novartis Pharma AG, Basel, Switzerland, ⁶Novartis, East Hanover, NJ
Background/Purpose: Sjögren’s disease (SjD) has a high disease burden in affected patients, with no licensed treatments currently available. The Clinical EULAR Sjögren’s syndrome disease activity…
Abstract Number: 2002 • ACR Convergence 2024
Pain and Physical Function, but Not Fatigue, Track with Disease Activity in Immune Checkpoint Inhibitor-Induced Inflammatory Arthritis
Laura Cappelli¹, Cyd Eaton¹, Yunzhi Wang¹, Michelle Jones² and Clifton Bingham³, ¹Johns Hopkins School of Medicine, Baltimore, MD, ²Johns Hopkins School of Medicine, Pittsburgh, PA, ³Johns Hopkins University, Baltimore, MD
Background/Purpose: Immune checkpoint inhibitor-induced inflammatory arthritis (ICI-IA) is an impactful and often persistent side effect of cancer immunotherapy that can lead to permanent joint damage…

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