Abstract Number: 2245 • ACR Convergence 2022
Feasibility and Efficacy of a Peer Education Program to Improve Patient Engagement in Lupus Clinical Trials
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)
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
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
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
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
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
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
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.
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
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
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
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
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
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
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…
ACR Meeting Abstracts