Abstracts tagged "education, patient"

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…
Abstract Number: 1153 • ACR Convergence 2021
The Influence of Companions on a Patient’s Decision to Transition to a Biosimilar: A Randomized Controlled Trial
Chiara Gasteiger¹, Katie Groom¹, Maria Lobo², Urte Scholz³, Keith Petrie¹ and Nicola Dalbeth¹, ¹University of Auckland, Auckland, New Zealand, ²Auckland District Health Board, Auckland, New Zealand, ³University of Zurich, Zurich, Switzerland
Background/Purpose: Involving patients in treatment decisions is commonplace in healthcare, but patients are frequently accompanied by a support person (companion). Companions are often actively involved…
Abstract Number: 0608 • ACR Convergence 2020
Patient and Parent Perspectives in a Academic Pediatric Rheumatology Transition Clinic
Rebecca Overbury¹, Tracy Frech², John Bohnsack³, CJ Inman¹, Sara Stern¹, Karen James¹, Erin Treemarcki⁴ and Aimee Hersh⁴, ¹University of Utah and Primary Children's Hospital, Salt Lake City, UT, ²University of Utah and Salt Lake Veterans Affair Medical Center, Salt Lake City, UT, ³University of Utah and Primary Children's Hospital, Cincinnati, OH, ⁴University of Utah and Primary Children's Hospital, Salt Lake City
Background/Purpose: In November 2018 we initiated a transition clinic called ACCORD (Adult Center for Childhood Onset Rheumatic Disease). Our unique structure integrates an adult rheumatologist…
Abstract Number: 1978 • ACR Convergence 2020
Prevalence and Factors Associated with Patient-Physician Discordance Among RA Patients Initiating Advanced Therapy
Jeffrey Curtis¹, Rose Medeiros², I-Heng Lee³, Rachel Mackey⁴, Richard Haubrich³, Hao Hu⁵, Jeffrey Greenberg⁶ and Alicea Wu³, ¹Division of Clinical Immunology and Rheumatology, University of Alabama at Birmingham, Birmingham, AL, ²Corrona, LLC, Waltham, MA, ³Gilead Sciences, Foster City, CA, ⁴Corrona, LLC and University of Pittsburgh, Waltham, MA, ⁵Gilead Sciences, Inc., Foster City, CA, ⁶Corrona, LLC and NYU School of Medicine, Waltham, MA
Background/Purpose: Some rheumatoid arthritis (RA) patients rate their disease activity worse than their physician does, but recent prevalence and factors associated with such discordance have…
Abstract Number: 0615 • ACR Convergence 2020
Rheumatology Going Digital: Developing a Rheumatology App for Use by All Patients Attending Our Department to Aid Remote Working and Self-management
Kirsten Mackay¹, Mark Clemence¹ and Rian Penford¹, ¹Torbay and South Devon NHS Foundation Trust, Torquay, United Kingdom
Background/Purpose: Patients with a rheumatological condition require information regarding the disease itself and treatments regimes. This is particularly important for new patients.Our local patient focus…
Abstract Number: PP07 • ACR Convergence 2020
Improving Communication with My Physician Drastically Improved My Health
Whitney Carter¹, ¹Lupus and Allied Diseases Association, Inc., Pleasanton, CA
Background/Purpose: In 2011, at the age of 14, I was sent to the emergency room with a platelet count of 19. The hematologist diagnosed me…
Abstract Number: 1132 • ACR Convergence 2020
Reliability of Virtual Sources of Education for Patients with Vasculitis
Patil Injean¹, Kathleena D'Anna², Lorena Salto³ and Mehrnaz Hojjati³, ¹Loma Linda University Medical Center, Redlands, CA, ²Loma Linda University Medical Center, Moreno Valley, CA, ³Loma Linda University, Loma Linda
Background/Purpose: Vasculitides are defined as inflammation of the vessel wall of different organ systems with reactive damage of mural structures. Patient education in understanding the…
Abstract Number: 1133 • ACR Convergence 2020
Patient Perceptions of Diagnosis, Tests, Treatments, Adherence and the Impact on Their Disease Understanding and Participation in Research Studies
Viviana Marzaioli¹, Mary Canavan¹, Siobhan Wade², Alexander Fraser³, Sinead Harney⁴, Alex Donnelly⁵, Arthritis Ireland Charity⁶, Douglas Veale⁷ and Ursula Fearon¹, ¹Molecular Rheumatology, Trinity College Dublin, Dublin, Dublin, Ireland, ²Molecular Rheumatology, Trinity College Dublin, Dublin, Ireland, ³University College Limerick, Limerick, Limerick, Ireland, ⁴University College Cork, Cork, Ireland, ⁵Patient Advocate Arthritis Ireland, Dublin, Ireland, ⁶Arthritis Ireland, Dublin, Ireland, ⁷EULAR Centre for Arthritis and Rheumatic Diseases, St Vincents University Hospital, UCD, Dublin, Dublin, Ireland
Background/Purpose: The diagnosis and treatment of inflammatory arthritis has been transformed largely by the development of drugs that target specific molecules of the immune system.…
Abstract Number: 1142 • ACR Convergence 2020
Implementation of an Evidence-based Transition Clinic in a Pediatric Rheumatology Academic Institution
Rebecca Overbury¹, Tracy Frech², John Bohnsack³, CJ Inman¹, Sara Stern¹, Karen James¹, Erin Treemarcki⁴ and Aimee Hersh⁴, ¹University of Utah and Primary Children's Hospital, Salt Lake City, UT, ²University of Utah and Salt Lake Veterans Affair Medical Center, Salt Lake City, UT, ³University of Utah and Primary Children's Hospital, Cincinnati, OH, ⁴University of Utah and Primary Children's Hospital, Salt Lake City
Background/Purpose: Transition from pediatric to adult rheumatology care is more likely to be successful if a transition program is in place. Previously successful interventions to…
Abstract Number: 1143 • ACR Convergence 2020
The Influence of YouTube on Spreading Awareness and Patient Education Regarding Systemic Lupus Erythematosus
Priyatha Garlapati¹, Jasmeen Uppal¹, Sarwat Umer² and Samina Hayat², ¹LSU Shreveport, Shreveport, ²LSU Shreveport, Shreveport, LA
Background/Purpose: A large global survey released by the World Lupus Federation showed that the awareness of SLE is low and many individuals have never heard…

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