Abstracts tagged "education, patient"

Abstract Number: PP14 • ACR Convergence 2023
Putting Lived Experience into Action: Flipping the Script on Living with a Chronic Disease
Natasha Trehan¹ and Naomi Abrahams², ¹University of Ottawa, Take a Pain Check Foundation, Toronto, ON, Canada, ²University of Ottawa, Ottawa, ON, Canada
Background/Purpose: Naomi was diagnosed with Juvenile Idiopathic Arthritis (JIA) at the age of 18, after enduring 3 years of misdiagnoses. Similarly, Natasha received a diagnosis…
Abstract Number: 1652 • ACR Convergence 2023
Lupus Research Action Network: Increasing Minority Clinical Trial Participation Through Peer Leaders
Melicent Miller¹, Stephanie Slan¹, Rosalind Ramsey-Goldman², Rodlescia Sneed³, Candace Feldman⁴, Patrick Wildman¹, Tori Justin⁵, Lydia Oberholtzer⁵ and Joy Buie⁶, ¹Lupus Foundation of America, Washington, DC, ²Northwestern University, Chicago, IL, ³Wayne State University, Detroit, MI, ⁴Brigham and Women's Hospital, Boston, MA, ⁵Sharp Insight, LLC, Montgomery County, MD, ⁶Lupus Foundation of America, York, SC
Background/Purpose: Black/African American people with lupus (PWL) experience greater disease prevalence and severity than White PWL. The need for more racial and ethnic diversity amongst…
Abstract Number: 1841 • ACR Convergence 2023
Clinical Trial Perceptions Among Male Patients with Systemic Lupus Erythematosus (SLE): Georgians Organized Against Lupus (GOAL) Cohort
Hilton Mozee¹, Charmayne Dunlop-Thomas¹, Gaobin Bao¹, Kim Schofield², Jessica Williams³ and S. Sam Lim¹, ¹Emory University, Atlanta, GA, ²Georgia State Rep. HD 63, Atlanta, GA, ³Emory University School of Medicine, Atlanta, GA
Background/Purpose: Minority patients are disproportionately affected by SLE. Yet, they are underrepresented in SLE clinical trials compared to White patients. Specifically, patients that identify as…
Abstract Number: 1898 • ACR Convergence 2023
Patient After Visit Instructions at a University Rheumatology Outpatient Clinic: Do They Make a Difference?
Dijo Joseph, Rong Hu, Robert Min, Meenakshi Jolly and Sobia Hassan, Rush University Medical Center, Chicago, IL
Background/Purpose: As low health literacy (HL) has been linked to poor health outcomes in rheumatic diseases, it is important to optimize organizational HL. One way…
Abstract Number: 2023 • ACR Convergence 2023
Transition Readiness over Time in a Rheumatology Transition Clinic
Background/Purpose: In 2018 we designed a Rheumatology Transition clinic to care for adolescent patients with autoimmune disease. We incorporate Health Care Transition curriculum (HCT) into…
Abstract Number: 2026 • ACR Convergence 2023
Developing a Guided Joint Self-Exam for Rheumatoid Arthritis Patients to Use in Telehealth-Delivered Care
Kelly Gavigan¹, David Curtis², Jeffrey Curtis³, W. Benjamin Nowell⁴, Danielle Ali⁵, Neelkamal Soares⁶, John Cush⁷, Rebecca Grainger⁸, Manas Jinka⁹, Sandeep Sodhi¹⁰, Natalie Fortune⁹ and Swamy Venuturupalli⁹, ¹Global Healthy Living Foundation, Upper Nyack, NY, ²Global Healthy Living Foundation, San Francisco, CA, ³University of Alabama at Birmingham, Birmingham, AL, ⁴Global Healthy Living Foundation, Nyack, NY, ⁵Global Healthy Living Foundation, Upper Nayack, NY, ⁶Western Mich Univ Homer Stryker MD Sch of Medicine, Kalamazoo, MI, ⁷University of Texas Southwestern Medical School, Dallas, TX, ⁸University of Otago, Wellington, New Zealand, ⁹Attune Health, Beverly Hills, CA, ¹⁰Illumination Health, Hoover, AL
Background/Purpose: Telehealth services and, increasingly, remote therapeutic monitoring, can be used to enable the continuum of clinical care in out-of-office settings. This remotely provided care…
Abstract Number: 2027 • ACR Convergence 2023
Developing and Implementing a Pilot Educational Intervention to Improve Readiness for Self-Management Among Patients with Rheumatic Diseases in Uganda
Trina Pal¹, Auther Jjunju², joshua bilsborrow³, Lillian Tugume⁴, Rachel Galvao³, Evelyn Hsieh⁵ and Mark Kaddumukasa⁴, ¹Section of Rheumatology, Yale School of Medicine, West Hartford, CT, ²The Arthritis Association of Uganda, Kampala, Uganda, ³Section of Rheumatology, Yale School of Medicine, New Haven, CT, ⁴Department of Medicine, School of Medicine, College of Health Sciences, Makerere University, Kampala, Uganda, ⁵Yale University, Department of Medicine, Section of Rheumatology; Yale School of Public Health; Section of Rheumatology, VA Connecticut Healthcare System, Westport, CT
Background/Purpose: Self-management is an effective strategy for improving health outcomes among patients with chronic conditions such as rheumatic diseases. Patient education about self-management among patients…
Abstract Number: 0172 • ACR Convergence 2023
Barriers and Strategies to Enhance Patient Research Partner Involvement in Rheumatology Research: A Systematic Literature Review
Krystel Aouad¹, Maarten de Wit², Muriel Elhai³, Diego Benavent⁴, Heidi Bertheussen⁵, Jette Primdahl⁶, Codruta Zabalan⁷, Paul Studenic⁸ and Laure Gossec⁹, ¹Saint George Hospital University Medical Center, Beirut, Lebanon, ²Patient Research Partner, Stichting Tools, Amsterdam, Netherlands, ³University Hospital zurich, University of Zurich, Zurich, Switzerland, ⁴Hospital la Paz, Madrid, Spain, ⁵Patient Research Partner, Oslo, Norway, ⁶University Hospital of Southern Denmark, Danish Hospital for Rheumatic Diseases, Sønderborg, Denmark, ⁷Patient Research Partner, Romania, Romania, Romania, ⁸Medical University of Vienna and Karolinska Institutet (sweden), Vienna, Austria, ⁹Sorbonne Université and Pitié Salpêtrière Hospital, Paris, France
Background/Purpose: Patient research partners (PRPs) participate in research teams and provide unique and valuable input. Their integration as equal partners is recommended (1). However, PRP…
Abstract Number: 2031 • ACR Convergence 2023
Involving Patients Research Partners in Research in Rheumatology: Where Do We Stand? A Scoping Review of Recent Randomized Controlled Trials and Translational Science Studies
Diego Benavent¹, Muriel Elhai², Krystel Aouad³, Paul Studenic⁴, Maarten de Wit⁵ and Laure Gossec⁶, ¹Hospital la Paz, Madrid, Spain, ²University Hospital zurich, University of Zurich, Zurich, Switzerland, ³Saint George Hospital University Medical Center, Beirut, Lebanon, ⁴Medical University of Vienna and Karolinska Institutet (sweden), Vienna, Austria, ⁵Patient Research Partner, Stichting Tools, Amsterdam, Netherlands, ⁶Sorbonne Université and Pitié Salpêtrière Hospital, Paris, France
Background/Purpose: Patients bring valuable insights to research; the inclusion of patient research partners (PRPs) in research projects is increasingly recognised and recommended in medical research,…
Abstract Number: 003 • 2023 Pediatric Rheumatology Symposium
Inflammation or Infection? Understanding Linguistic and Cultural Nuances Impacting the Care of Somali Children with Juvenile Idiopathic Arthritis
Emily Hause, Abdirazak Ali and Muna Sunni, University of Minnesota, Minneapolis, MN
Background/Purpose: Data regarding the linguistic and cultural factors impacting the Somali patient experience and understanding with regards to juvenile idiopathic arthritis (JIA) are limited. We…
Abstract Number: 0185 • ACR Convergence 2022
Empowered2work: Development and Delivery of a Multi-faceted Peer-coaching Workshop Focusing on Health Promotion and Ergonomic Issues in the Workplace
Erika Mosor, Romualdo Ramos and Tanja Stamm, Medical University of Vienna, CeMSIIS - Center for Medical Statistics, Informatics, and Intelligent Systems, Section for Outcomes Research, Wien, Austria
Background/Purpose: Work and education significantly impact health and quality of life in people with rheumatic and musculoskeletal diseases (RMDs). However, patients often experience internal and…
Abstract Number: 1348 • ACR Convergence 2022
We Asked Patients and Families: What Is the Job of a Pediatric Rheumatologist?
Emily Hause¹, Nathan Rubin², Bryce Binstadt¹, Colleen Correll¹, Patricia Hobday¹, Alison Lerman¹, Shawn Mahmud¹, Mona Riskalla¹, Meghan Ryan³, Zachary Shaheen¹ and Danielle Bullock¹, ¹University of Minnesota, Minneapolis, MN, ²University of Minnesota Masonic Cancer Center, Minneapolis, MN, ³University of Minnesota, Vadnais Heights, MN
Background/Purpose: Pediatric rheumatology is a highly specialized field, with approximately 300 practicing pediatric rheumatologists in the United States. Prior research into patient understanding of medical…
Abstract Number: 0196 • ACR Convergence 2022
The Impact of Barometric Pressure Waves on Connective Tissue Disorders
Fehmida Zahabi¹ and Kevin Kerr², ¹Texas Rheumatology Care, Plano, TX, ²Chimera Innovations LLC, Allen, TX
Background/Purpose: Pain is a disabling, depressing state which reduces an individual's productivity. Weather changes have been vaguely attributed to cause pain. Previous studies have had…
Abstract Number: 1349 • ACR Convergence 2022
Priority Educational Topics to Deliver Information About Immune Checkpoint Inhibitors for Patients with Cancer and a Pre-Existing Autoimmune Disease
Maria A. Lopez-Olivo¹, Juan Ruiz², Gabrielle Duhon², Mehmet Altan³, Hussein Tawbi², Adi Diab⁴, Clifton O. Bingham III⁵, Cassandra Calabrese⁶, Natalia I. Heredia⁷, Robert J. volk² and Maria Suarez-Almazor⁸, ¹The University of Texas, MD Anderson Cancer Center, Houston, TX, ²The University of Texas MD Anderson Cancer Center, Houston, TX, ³Department of Thoracic/Head and Neck Medical Oncology, The University of Texas MD Anderson Cancer Center, Houston, TX, ⁴UT MD Anderson Cancer Center, Houston, TX, ⁵Johns Hopkins University, Baltimore, MD, ⁶Cleveland Clinic Foundation, Cleveland Heights, OH, ⁷The University of Texas Health Science Center at Houston, School of Public Health, Houston, TX, ⁸MD Anderson Cancer Center, Houston, TX
Background/Purpose: Immune checkpoint inhibitors (ICI) have improved cancer outcomes but can cause severe toxicity and flares in cancer patients with pre-existing autoimmune disease. The objective…
Abstract Number: 0197 • ACR Convergence 2022
Is Similar the Same? How We Incorporated Feedback from 250 Patients into a CME Activity on Biosimilars
Stephen Bender¹ and Suzanne Schrandt², ¹FACTORx, Cherry Hill, NJ, ²ExPPect, Arlington, VA
Background/Purpose: The goals of this project were two-fold: The primary goal was to provide clinicians who treat rheumatoid arthritis (RA) and inflammatory bowel disease (IBD)…

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