FOR IMMEDIATE RELEASE
Twenty Additional Abstracts Accepted for Presentation
UPPER NYACK, NY (November 8, 2022) – CreakyJoints®, the digital, international patient community for people with all forms of arthritis and part of the Global Healthy Living Foundation, will describe key findings from a multidisciplinary steering committee that identified the critical research topics to decrease vaccine hesitancy and improve vaccine uptake in adults living with autoimmune disease in an oral presentation at the American College of Rheumatology (ACR) Convergence 2022 (Philadelphia, PA, November 10-14, 2022). During the ACR Convergence, CreakyJoints will be a featured presenter at the Advancing Telemedicine in Rheumatology Session, plus will present twelve additional scientific posters and eight posters accepted to the patient perspectives track.
Titled, “Priority Research Topics for Vaccine Uptake Among Adults with Autoimmune Conditions,” the oral presentation (November 14, 2022, 5:45pm ET during the 4:30-6:00pm session) summarizes the outcomes of a yearlong process supported by the Patient-Centered Outcomes Research Institute (PCORI) to engage clinicians, patients, researchers, regulators, policy makers, and vaccine manufacturers through iterative discussions followed by rating and ranking rounds, to identify vaccine uptake/hesitancy research topics. Thirty-three topics were narrowed down using a modified online Delphi process to thirteen topics rated as critical by at least 70 percent of stakeholders. Top topics identified for research included: vaccine effectiveness for adults with autoimmune disease, beliefs about vaccine safety among adults with autoimmune disease, and myths and misinformation about vaccines.
“There is an urgent need to improve uptake of vaccines and reduce the risk of vaccine preventable diseases such as pneumococcal pneumonia, influenza, zoster, human papillomavirus, and SARS-CoV-2 among adults living with autoimmune conditions – who are at nearly twice the risk of acquiring vaccine-preventable infections and from complications from these infections. The first step is to identify priority topics for future patient-centered outcomes research,” said lead author Shilpa Venkatachalam, PhD, Director, Patient-Centered Research Operations and Ethical Oversight, Global Healthy Living Foundation. “If we can better understand the safety and efficacy of vaccines for people living with autoimmune conditions, along with the concerns patients with these underlying conditions have, we may be able to optimize vaccine uptake in this vulnerable population.”
During the ACR Convergence, CreakyJoints will have an additional opportunity to promote inclusion of the patient perspective in research when W. Benjamin Nowell, PhD, MSW, Director, Patient-Centered Research, Global Healthy Living Foundation, presents a talk titled “Patient Perspectives on Telemedicine,” (November 13, 2022, 10:30am ET) as part of the session, “Advancing Telemedicine in Rheumatology.” One of the 2022 accepted scientific posters, “Home-Based Telehealth in Rheumatology: A Systematic Review & Narrative Synthesis,” also shares patient perspectives on telemedicine delivery.
“Patients have long demanded more flexible health care options, but the pandemic really expanded the opportunity for telemedicine in rheumatology as well as remote therapeutic monitoring, where patient-generated data can be tracked in real time for clinical care, like at the start of a new treatment. The good news is that, as of this year, physicians can be reimbursed for remote monitoring,” stated Dr. Nowell, who is also the principal investigator of the ArthritisPower® Research Registry and an author of the above referenced poster. “Sessions that include panel discussion and questions from the audience are a valuable opportunity to reflect on our ArthritisPower research conducted during the pandemic that quantified the preferences, access, and satisfaction with telemedicine that people living with rheumatic disease express, which we hope will promote its continued availability and expansion to serve the needs of all patients.”
“Spanish-Language First” Materials May Improve Health Outcomes in the Hispanic Community
During the ACR Convergence, CreakyJoints will present two posters summarizing findings from the ongoing Hispanic Outreach Program Effect–Culturally Appropriate Education (HOPE–CAPE) study, which focuses on cultural training for rheumatologists, and education for people with rheumatoid arthritis (RA) who identify as Hispanic. In “Exploring Patient Journeys and Education Needs of Hispanic Individuals with Rheumatoid Arthritis,” researchers report that before participating in the HOPE-CAPE program, many Spanish-speaking people turned only to family or friends for information about RA and were encouraged to consider home remedies and putative “cures” rather than to seek out specialty care. With increased participation in HOPE-CAPE, which was conducted completely in Spanish, many participants realized in hindsight the importance of finding Spanish-speaking physicians, navigating insurance reimbursement for disease-modifying anti-rheumatic drugs (DMARDs), and having trustworthy information regarding DMARDs, food/diet, exercise, and home remedies for RA.
“Our program materials were written using conversational, idiomatic Spanish, which patients found more useful and trustworthy than materials simply translated from their original English,” said Daniel Hernandez, MD, Director of Medical Affairs and Hispanic Outreach, Global Healthy Living Foundation, and lead study author. “In addition, we found that even when patients identified trustworthy information in Spanish, it was more effective overall to present the same material in various ways such as articles, videos, podcasts, graphics, and comics. This proves what we already do is working and provides important insights regarding how to improve on our delivery of education to this community in the future.”
In “Patient Perspective of Unique Support and Education Needs of Latinx/Latino(a)/Hispanic Rheumatoid Arthritis Patients: Implications for a Culturally Tailored and Disease Specific Intervention,” GHLF collaborated with researchers at Hospital for Special Surgery (HSS), New York City, on a mixed methods qualitative study, using a licensed bilingual social work researcher to conduct semi-structured interviews with doctor-diagnosed members of the Hispanic RA community (18+ years) to identify unique education and support needs. To date, preliminary findings from 17 patients (8 Spanish-speaking, 9 English-speaking) highlight the unique emotional and mental health needs in the Hispanic community, related to a participants’ willingness to share with family and friends their experience with symptoms, seek out mental health and community support, and develop a good patient-provider relationship.
Dr. Hernandez added, “Though this study is ongoing, it suggests that it is vital to incorporate culturally relevant concepts. Information that includes family and empowerment messages seems to resonate with the majority of these patients.”
Scientific Posters by CreakyJoints at the ACR Convergence 2022:
- Priority Research Topics for Vaccine Uptake Among Adults with Autoimmune Conditions (Oral Presentation, Abstract 2247, Monday, November 14, 2022, 4:30-6:00pm ET)
- Exploring Patient Journeys and Education Needs of Hispanic Individuals with Rheumatoid Arthritis (Poster 0184, Saturday, November 12, 2022, 1-3:00pm ET)
- Patient Perspective of Unique Support and Education Needs of Latinx/Latino(a)/Hispanic Rheumatoid Arthritis Patients: Implications for a Culturally Tailored and Disease Specific Intervention (Poster 0181, Saturday, November 12, 2022, 1-3:00pm ET)
- What Education Topics and Smartphone App Functions Do Rheumatology Patients Consider Important? Survey of Patients in a Community-Based Practice Network (Poster 1332, Sunday, November 13, 2022, 1-3:00pm ET)
- Patient Perceptions of Rheumatoid Arthritis Blood Work: A Cross-sectional Survey in the ArthritisPower Registry (Poster 1333, Sunday, November 13, 2022, 1-3:00pm ET)
- Managing Psoriatic Arthritis: Patients’ Views and Attitudes to Using an Online Wellness Program (Poster 0212, Saturday, November 12, 2022, 1-3:00pm ET)
- Early Real-World Effectiveness of Upadacitinib in Rheumatoid Arthritis Using Patient-Reported Outcomes Collected Via Mobile Application (Poster 1354, Sunday, November 13, 2022, 1-3:00pm ET)
- Acceptance of Virtual Reality for Managing Their Disease Among People with Rheumatologic Conditions with and without Prior Experience using Virtual Reality (Poster 0195, Saturday, November 12, 2022, 1-3:00pm ET)
- Fertility and the Use of Assisted Reproductive Technologies: Perceptions, Thoughts and Experiences of Men and Women with Rheumatic Disease (Poster 0948, November 13, 2022, 9-10:30am ET)
- Home-Based Telehealth in Rheumatology: A Systematic Review & Narrative Synthesis (Poster 0743, Sunday, November 13, 2022, 9-10:30am ET)
- COVID-19 Vaccine Uptake and Reasons for Hesitancy in a Large Rheumatology Practice Network (Poster 0083, Saturday, November 12, 2022, 1-3:00pm ET)
- Peer Coach Intervention to Improve Primary Cardiovascular Disease Screening for Patients with Rheumatoid Arthritis (Poster 0911, Sunday, November 13, 2022, 9-10:30am ET)
- Real-World Evidence from Social Media Provides Insights into Patient Mental Health Outcomes in the Management of Gout (Poster 0201, Saturday, November 12, 2022, 1-3:00pm ET)
CreakyJoints Posters Accepted Into the Patient Perspectives Track:
- Living with Rheumatoid Arthritis in a Rural Farming Community: How I Found a Rheumatologist and Got Targeted Treatment (Poster PP19, Author Vanessa Kerr, Saturday, November 12, 2022, 1-3:00pm ET)
- Please Hear Me: How Effective Provider-Patient Communication Improved My Psoriatic Arthritis (Poster PP16, Author: Ashley Krivohlaek, Saturday, November 12, 2022, 1-3:00pm ET)
- From Practical Tips to Heartfelt Encouragement: How Social Media Can Improve Quality of Life with Rheumatic Disease (Poster PP05, Authors Cheryl Crow and Zoe Rothblatt, Saturday, November 12, 2022, 1-3:00pm ET)
- What Lies Beneath: Making Rheumatoid Arthritis Visible for the Seronegative Patient through Precision Medicine (Poster PP21, Author Shilpa Venkatachalam, PhD, MPH, Saturday, November 12, 2022, 1-3:00pm ET)
- From Devastated to Empowered (author: Eileen Davidson: How Patient Engagement in Research Changes Lives (Poster PP18, Author Eileen Davidson, Saturday, November 12, 2022, 1-3:00pm ET)
- We Became Advocates, Educators, and a Support System for Hispanic / Latino Patients with Rheumatoid Arthritis and Their Caregivers Through Involvement in a Virtual Patient Advisory Board (Poster PP12, Authors: Zucy Almonacid, Wigna Cruz, Francisca Garcia, Teresa Hernandez, Velia Martinez, Patricia Mattos, Mario Mutis, and Denise Serrano, Saturday, November 12, 2022, 1-3:00pm ET)
- Exercise as a Supportive Treatment for my Ankylosing Spondylitis (Poster PP11, Author Sara King-Dowling, PhD, Saturday, November 12, 2022, 1-3:00pm ET)
- Engaging with Spoon Theory: How I Make Decisions Using a Cost-Benefit Analysis That Works to Improve My Mental Health While Living With RA (Poster PP17, Author Stephanie Aleite, Saturday, November 12, 2022, 1-3:00pm ET)
Created by CreakyJoints®, ArthritisPower® is the first-ever patient-centered research registry for joint, bone, and inflammatory skin conditions, as well as arthritis and rheumatologic manifestations of gastrointestinal-tract (GI) and skin conditions. With tens of thousands of consented arthritis patients, the free ArthritisPower mobile and desktop application allows patients to track their disease and participate in voluntary research studies in a secure and accessible manner. Results from ArthritisPower studies are frequently published in peer-reviewed journals and presented at medical meetings in the United States and around the world. ArthritisPower Patient Governors serve as gatekeepers for researchers who seek to access registry data or solicit the community to participate in unique, voluntary studies. To learn more and join ArthritisPower, visit ArthritisPower.org or in Spanish at ArthritisPower.org.es.
CreakyJoints® is an international digital community for millions of arthritis patients and caregivers who seek education, support, advocacy, and patient-centered research. We represent patients in English, Spanish, and French through our popular social media channels, our websites, and the 50-State Network, which includes more than 1,700 trained volunteer patient, caregiver, and provider health care activists.
Part of the Global Healthy Living Foundation, CreakyJoints also has a patient-reported outcomes registry called ArthritisPower® (ArthritisPower.org), which includes tens of thousands of consented arthritis patients who track their disease while volunteering to participate in longitudinal and observational peer-reviewed research. In addition to online and downloadable educational resources, CreakyJoints publishes many arthritis and chronic disease podcast series, available on all major streaming platforms, that provide both patient and provider perspectives. It also hosts PainSpot (PainSpot.org), a digital risk-assessment tool for musculoskeletal conditions and injuries, and eRheum (eRheum.org), for telehealth and virtual-care support. All programming is free, always. For more information, visit CreakyJoints.org.
Find us online:
Global Healthy Living Foundation: ghlf.org
CreakyJoints Canada: CreakyJoints.ca
CreakyJoints Español: CreakyJoints.org.es
CreakyJoints Australia: CreakyJoints.org.au
Facebook: facebook.com/CreakyJoints & facebook.com/GlobalHealthyLivingFoundation
Twitter: @GHLForg, @CreakyJoints, #CreakyChats
Instagram: @creaky_joints, @creakyjoints_aus, @creakyjoints_esp
Global Healthy Living Foundation Podcast Network: https://ghlf.org/patient-education/listen/