ACR Meeting Abstracts

ACR Meeting Abstracts

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Abstracts tagged "education, patient"

  • Abstract Number: 2245 • ACR Convergence 2022

    Feasibility and Efficacy of a Peer Education Program to Improve Patient Engagement in Lupus Clinical Trials

    Saira Sheikh1, Caroline Donovan2, Carla Menezes2, Albert T. Roy2, Andrew Simkus3, Diane Gross4, Anca Askanase5, Rosalind Ramsey-Goldman6, Vikas Majithia7, Nicole Wanty3, Annie McNeill3, Kristen Holtz3 and S. Sam Lim8, 1University of North Carolina at Chapel Hill, Chapel Hill, NC, 2Lupus Therapeutics, LLC, New York, NY, 3KDH Research & Communication, Atlanta, GA, 4Lupus Research Alliance, New York, NY, 5Columbia University Medical Center, New York, NY, 6Northwestern University Feinberg School of Medicine, Chicago, USA, Chicago, IL, 7University of Mississippi Medical Center, Ridgeland, MS, 8Emory University, Atlanta, GA

    Background/Purpose: To assess outcomes related to Lupus Therapeutics' Patient Advocates for Lupus Studies (LT-PALS) a peer-to-peer clinical trial (CT) education program designed to improve CT…
  • Abstract Number: 0944 • ACR Convergence 2022

    Inconsistent Family Planning Documentation in Women with Interstitial Pneumonia with Autoimmune Features (IPAF)

    Elena Joerns1, Brooke Mills2, Una Makris3, Traci Adams1 and Bonnie Bermas1, 1UT Southwestern, Dallas, TX, 2UT Southwestern Medical Center, Fort Worth, TX, 3UT Southwestern Medical Center and Dallas VA, Dallas, TX

    Background/Purpose: Family planning discussions improve pregnancy outcomes in women with interstitial lung disease (ILD). Women with interstitial pneumonia with autoimmune features (IPAF), a subset of…
  • Abstract Number: PP04 • ACR Convergence 2022

    Invisible to Invincible: The Role of Virtual Events in Autoimmune Advocacy, Education and Community Building

    Kara Wada, The Ohio State University, Columbus, OH

    Background/Purpose: After years of ignoring my dry eyes and mouth, unrelenting fatigue, and body pain, an off-the-cuff comment from my dental hygienist finally pushed me…
  • Abstract Number: 0947 • ACR Convergence 2022

    Development of a Person-Centered Family Planning Decision Aid for Women with Rheumatic Diseases

    Mehret Birru Talabi1, Traci Kazmerski2, Raelynn O'Leary3, Ashley Deal3, Megan Clowse4, Oilvia Stransky5 and Sonya Borrero5, 1University of Pittsburgh, Pittsburgh, PA, 2Children's Hospital of Pittsburgh, Pittsburgh, 3Carnegie Mellon University School of Design, Pittsburgh, 4Duke University, Durham, NC, 5University of Pittsburgh, Pittsburgh

    Background/Purpose: Given the potential for pregnancy-associated mortality and morbidity, the question of whether and/or when to become pregnant is often a profoundly important decision for…
  • Abstract Number: PP05 • ACR Convergence 2022

    From Practical Tips to Heartfelt Encouragement: How Social Media Can Improve Quality of Life with Rheumatic Disease

    Cheryl Crow1 and Zoe Rothblatt2, 1Arthritis Life, Bellevue, WA, 2Global Healthy Living Foundation, New York, NY

    Background/Purpose: Living with different autoimmune rheumatic diseases, we (Cheryl and Zoe) share similar struggles with disease management, and successes in learning new ways to use…
  • Abstract Number: 0747 • ACR Convergence 2021

    Understanding Heterogeneity in Patients’ Conceptualization of Treatment for Rheumatoid Arthritis: A Cluster Analysis

    Betty Hsiao1, Julie Downs2, Mandy Lanyon2, Leslie Harrold3, Jeffrey Curtis4, Susan Blalock5, Carole Wiedmeyer6, SHILPA VENKATACHALAM7, William Nowell8 and Liana Fraenkel9, 1Yale-New Haven Medical Center, New Haven, CT, 2Carnegie Mellon, Pittsburgh, PA, 3Corrona, LLC, Northborough, MA, 4Division of Clinical Immunology and Rheumatology, Department of Medicine, Department of Epidemiology, University of Alabama at Birmingham, Birmingham, AL, 5Chapel Hill, Chapel Hill, NC, 6Global Healthy Living Foundation, Nyack, NY, 7Global Healthy Living Foundation, New York, NY, 8Global Healthy Living Foundation, Upper Nyack, NY, 9Berkshire Medical Center, Lenox, MA

    Background/Purpose: Uptake of treat to target strategies for the management of rheumatoid arthritis (RA) is low. While there are known system-related barriers to accessing treatment,…
  • Abstract Number: PP05 • ACR Convergence 2021

    Fighting Health-Related Misinformation Using Social Media / How Creating an Online Group for Patients with Relapsing Polychondritis — and Moderating It with Health Professionals — Helps Spread Reliable and Empowering Information

    Michael Linn1, Spenser Mestel2 and Susie Ratledge3, 1Relapsing Polychondritis Foundation, New York, NY, 2New York, NY, 3Relapsing Polychondritis: Secular Science and Support group, Chattanooga, TN

    Background/Purpose: Before I became ill in 2017, I was a registered nurse with a degree in health science who'd often educate patients about how they…
  • Abstract Number: 0977 • ACR Convergence 2021

    Enhancement of Patient and Clinician Partnerships in Juvenile Idiopathic Arthritis Management Using a Point-of-Care Dashboard: Development and Pilot Testing

    Erica Lawson1, Lisa Johnson2, Jabeen Ahmad2, Vincent Del Gaizo3, Brittany Donaldson4, Julie Eller5, Yukiko Kimura6, Cathy Knucken7, Tzielan Lee8, Corinne Pinter9, Doreen Tabussi10, Alysha Taxter11 and Aricca Van Citters2, 1University of California San Francisco, San Francisco, CA, 2Dartmouth College, Lebanon, NH, 3Childhood Arthritis & Rheumatology Research Alliance (CARRA), Whitehouse Station, NJ, 4Wake Forest University School of Medicine Brenner Children's, Winston Salem, NC, 5Arthritis Foundation, Washington, DC, 6Hackensack University Medical Center, New York, NY, 7Patient Partner, Byram, NJ, 8Stanford University School of Medicine, Palo Alto, CA, 9Patient Partner, Sugar Land, TX, 10Hackensack University Medical Center, Upper Saddle River, NJ, 11Wake Forest Baptist Medical Center, Winston-Salem, NC

    Background/Purpose: Health outcomes improve when people living with chronic conditions partner with their clinicians to coproduce care based on their values, preferences, goals, and the…
  • Abstract Number: PP06 • ACR Convergence 2021

    Collaborative Advocacy Helps Me and Other Patients With Relapsing Polychondritis (“RP”’) /  My life improved by helping the RP Foundation and Race for RP facilitate awareness, education, and research to improve the quality of life for patients with RP and advance a cure for this disease.

    Michael Linn1 and Dan Smith2, 1Relapsing Polychondritis Foundation, New York, NY, 2Relapsing Polychondritis Foundation, Canton, MI

    Background/Purpose: In March 2020, I was diagnosed as having relapsing polychondritis ("RP"), an understudied, underdiagnosed, and undertreated debilitating autoimmune disease that can be fatal if…
  • Abstract Number: 1065 • ACR Convergence 2021

    Optimizing Joint Pain EConsult Referrals in an Underserved Region of Southern California

    Neha Chiruvolu1 and Vaneet Sandhu2, 1UC Riverside School of Medicine, Riverside, CA, 2Loma Linda University Health, Loma Linda, CA

    Background/Purpose: Electronic consultations (eConsults) are increasingly utilized to supplement or replace face to face (FTF) visits in different medical specialties. They are especially valuable in…
  • Abstract Number: PP07 • ACR Convergence 2021

    How Online Spanish-Language Resources Got Me and My RA Through the COVID-19 Pandemic

    Wigna Cruz, Puerto Rico

    Background/Purpose: I was experiencing joint pain especially in my wrists, which led me to see my physician for testing. Initially I was misdiagnosed with lupus.…
  • Abstract Number: 1068 • ACR Convergence 2021

    Analysis of Tweets Containing Information Related to Rheumatological Diseases on Twitter

    Adrian abbasi1, Miguel Álvarez-Mon2, Carolina Donat-Vargas3, ana Perez4, julio suarez1, lorena montano1, emilio rico1 and melchor Alvarez de Mon1, 1Hospital Universitario Príncipe de Asturias, Madrid, Spain, 2Hospital Universitario Infanta Leonor, Madrid, Spain, 3IMDEA Food, Cardiovascular and Nutritional Epidemiology Group, Madrid, Spain, 4Hospital Universitario Príncipe de Asturias. Rheumatology. Medicine Faculty. Alcala University Department., Madrid, Spain

    Background/Purpose: Twitter is an indicator of the interests of its users in the real world, and therefore, is an appropriate setting to assess the content…
  • Abstract Number: PP13 • ACR Convergence 2021

    CreakyKitchen: How the Online Cooking Show I Started is Building Community and Encouraging Better Food Choices for Me and Others Living with Rheumatic and Chronic Disease

    Chantelle Marcial, Boston, MA

    Background/Purpose: At 19, I was mis-diagnosed with Lupus as it was a common condition in my family. My treatment at that time was mainly DMARDs,…
  • Abstract Number: 1069 • ACR Convergence 2021

    Supporting Patient-Centered Care in the Pediatric Rheumatology Setting: Patient, Family and Provider Experiences with OurNotes

    Uptej Khalsa1, Rajdeep Pooni2, Christy Sandborg1, Imelda Balboni1, Karen Wayman3 and Tzielan Lee4, 1Stanford University, Palo Alto, CA, 2Stanford Children's Health, Palo Alto, CA, 3Stanford Children’s Health, Palo Alto, CA, 4Stanford University School of Medicine, Palo Alto, CA

    Background/Purpose: Health information transparency enabled by the widespread adoption of patient portals and open notes has truly transformed the way healthcare is delivered. However, broader…
  • Abstract Number: 1151 • ACR Convergence 2021

    Experiences and Finding Meaning Among Latin Americans Living with Lupus: Learning from Social Media Narratives by Patients and Their Social Network

    Tirsa Colmenares-Roa1, Alfonso Gastelum-Strozzi2, Erica Crosley3, Yurilis Fuentes-Silva4, Cristina Reategui-Sokolova5, Claudia Elera-Fitzcarrald6, Soledad Ibañez7, Ernesto Cairoli8, Bernardo A. Pons-Estel9, Ingris Peláez-Ballestas1 and Cristina Drenkard10, 1Hospital General de Mexico "Dr. Eduardo Liceaga", Mexico, Mexico, 2Instituto de Ciencias Aplicadas y Tecnología, Universidad Nacional Autónoma de México, Mexico, Mexico, 3John Hopkins University, Baltimore, MD, 4Division of Rheumatology, Complejo Hospitalario Universitario Ruiz y Páez, Universidad de Oriente, Ciudad Bolívar, Centro Nacional de Enfermedades Reumáticas, Ciudad Bolívar, Venezuela, 5Hospital Guillermo Almenara Irigoyen, Lima, Peru, 6Universidad Cientifica del Sur/Hospital Guillermo Almenara Irigoyen. EsSalud, Lima, Peru, 7Sanatorio Güemes, Buenos Aires, Argentina, 8Autoimmune Diseases Unit, Centro Asistencial del Sindicato Médico del Uruguay (CASMU) and Hospital Evangélico, Montevideo, Uruguay, 9Grupo Oroo - Centro Regional de Enfermedades Autoinmunes y Reumticas (GO-CREAR), Rosario, Argentina, 10Emory University, Atlanta, GA

    Background/Purpose: SLE disproportionately affects Latin Americans, and outcomes are worse amongst them compared to non-minority populations. Understanding patients' views of living with SLE is critical…
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