Abstracts tagged "education, patient"

Abstract Number: 0367 • ACR Convergence 2021
Can Belonging to an AxSpA Patient Organization Be Associated with Benefits to Its Members? Results from the European Map of Axial Spondyloarthritis (EMAS)
Marco Garrido-Cumbrera¹, Souzi Makri², Denis Poddubnyy³, Christine Bundy⁴, Laura Christen⁵, Sergio Sanz-Gomez⁶, José Correa-Fernández⁶, Raj Mahapatra⁷, Carlos Jesús Delgado-Domínguez⁶ and Victoria Navarro-Compán⁸, ¹Health & Territory Research (HTR), University of Seville, Sevilla, Spain, ²Cyprus League Against Rheumatism (CYPLAR), Limassol, Cyprus, ³Department of Rheumatology, Charité – Universitätsmedizin, Berlin, Germany, ⁴Cardiff University, Cardiff, Wales, United Kingdom, ⁵Novartis Pharma AG, Basel, Switzerland, ⁶Health & Territory Research (HTR), Universidad de Sevilla, Seville, Spain, ⁷Axial Spondyloarthritis International Federation (ASIF), London, United Kingdom, ⁸Rheumatology service, Hospital Universitario La Paz-IdiPaz, Madrid, Spain
Background/Purpose: Patient organizations (POs) provide education and support services aimed to improve the quality of life of axSpA patients. This analysis aims to identify factors…
Abstract Number: 1716 • ACR Convergence 2021
Teratogenic Medication Use Associated with Favorable Odds of Contraception Counseling in a Cohort of Women with Systemic Lupus Erythematosus at a Large Tertiary Academic Medical Center
Shruti Chandramouli¹, Carolina Alvarez², R. Gina Silverstein³ and Saira Sheikh⁴, ¹Department of Internal Medicine, Division of Rheumatology, Allergy & Immunology, University of North Carolina at Chapel Hill, Chapel Hill, NC, ²University of North Carolina at Chapel Hill, Chapel Hill, NC, ³Department of Obstetrics & Gynecology, University of North Carolina at Chapel Hill, Chapel Hill, NC, ⁴University 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: Systemic lupus erythematosus (SLE) primarily affects women of childbearing age, who have an increased risk of pregnancy complications such as preterm labor and preeclampsia,…
Abstract Number: 0742 • ACR Convergence 2021
Googling Rheumatic Diseases: Evaluating the Reliability of Information Found on the Internet
Neha Chiruvolu¹, Muntarin Karim² and Vaneet Sandhu³, ¹UC Riverside School of Medicine, Riverside, CA, ²Loma Linda University, Redlands, CA, ³Loma Linda University Health, Loma Linda, CA
Background/Purpose: The internet is a significant source of information for health-related topics. Given the complexity of rheumatic diseases, rheumatologists may find their patients searching online…
Abstract Number: 1725 • ACR Convergence 2021
Higher Prevalence of Aspirin Use with a Specific Educational Tool in SLE Pregnancies: Preliminary Results
Joo Young (Esther) Lee¹, Arielle Mendel², Isabelle Malhamé², Sasha Bernatsky¹ and Evelyne Vinet³, ¹McGill University, Montréal, QC, Canada, ²McGill University Health Centre, Montréal, QC, Canada, ³McGill University Health Centre, Mont Royal, QC, Canada
Background/Purpose: Pregnant women with SLE are at substantial risk of preeclampsia. Best international practice guidelines recommend aspirin (ASA) in this population, as it reduces preeclampsia…
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…
Abstract Number: 1152 • ACR Convergence 2021
A Follow-Up Evaluation of a Longstanding Telephone Peer Counseling Service for People with Systemic Lupus Erythematosus and Their Loved Ones
Priscilla Toral, Roberta Horton and Jillian Rose, Hospital for Special Surgery, New York, NY
Background/Purpose: With technology rapidly evolving, studies still reinforce the value of telephone peer support for people living with chronic illness. A follow-up evaluation was conducted…

All abstracts accepted to ACR Convergence are under media embargo once the ACR has notified presenters of their abstract’s acceptance. They may be presented at other meetings or published as manuscripts after this time but should not be discussed in non-scholarly venues or outlets. The following embargo policies are strictly enforced by the ACR.

Accepted abstracts are made available to the public online in advance of the meeting and are published in a special online supplement of our scientific journal, Arthritis & Rheumatology. Information contained in those abstracts may not be released until the abstracts appear online. In an exception to the media embargo, academic institutions, private organizations, and companies with products whose value may be influenced by information contained in an abstract may issue a press release to coincide with the availability of an ACR abstract on the ACR website. However, the ACR continues to require that information that goes beyond that contained in the abstract (e.g., discussion of the abstract done as part of editorial news coverage) is under media embargo until 10:00 AM ET on November 14, 2024. Journalists with access to embargoed information cannot release articles or editorial news coverage before this time. Editorial news coverage is considered original articles/videos developed by employed journalists to report facts, commentary, and subject matter expert quotes in a narrative form using a variety of sources (e.g., research, announcements, press releases, events, etc.).

Violation of this policy may result in the abstract being withdrawn from the meeting and other measures deemed appropriate. Authors are responsible for notifying colleagues, institutions, communications firms, and all other stakeholders related to the development or promotion of the abstract about this policy. If you have questions about the ACR abstract embargo policy, please contact ACR abstracts staff at [email protected].