{"id":50620,"date":"2022-11-08T16:02:14","date_gmt":"2022-11-08T15:02:14","guid":{"rendered":"https:\/\/pharma-trend.com\/en\/creakyjoints-presents-multistakeholder-priorities-for-research-in-vaccine-uptake-among-adults-with-autoimmune-disease-at-the-american-college-of-rheumatology-convergence-2022\/"},"modified":"2022-11-08T16:02:14","modified_gmt":"2022-11-08T15:02:14","slug":"creakyjoints-presents-multistakeholder-priorities-for-research-in-vaccine-uptake-among-adults-with-autoimmune-disease-at-the-american-college-of-rheumatology-convergence-2022","status":"publish","type":"post","link":"https:\/\/pharma-trend.com\/en\/creakyjoints-presents-multistakeholder-priorities-for-research-in-vaccine-uptake-among-adults-with-autoimmune-disease-at-the-american-college-of-rheumatology-convergence-2022\/","title":{"rendered":"CreakyJoints Presents Multistakeholder Priorities for Research in Vaccine Uptake Among Adults with Autoimmune Disease at the American College of Rheumatology Convergence 2022"},"content":{"rendered":"
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\nTwenty Additional Abstracts Accepted for Presentation<\/b>\n<\/p>\n

UPPER NYACK, N.Y.–(BUSINESS WIRE)–#ACR22<\/a>—CreakyJoints\u00ae<\/a>, the digital, international patient community for people with all forms of arthritis and part of the Global Healthy Living Foundation<\/a>, 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.\n<\/p>\n

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\nTitled, \u201cPriority Research Topics for Vaccine Uptake Among Adults with Autoimmune Conditions<\/a>,\u201d 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.\n<\/p>\n

\n\u201cThere 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,\u201d said lead author Shilpa Venkatachalam, PhD, Director, Patient-Centered Research Operations and Ethical Oversight, Global Healthy Living Foundation. \u201cIf 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.\u201d\n<\/p>\n

\nDuring the ACR Convergence, CreakyJoints will have an additional opportunity to promote inclusion of the patient perspective in research<\/a> when W. Benjamin Nowell, PhD, MSW, Director, Patient-Centered Research, Global Healthy Living Foundation, presents a talk titled \u201cPatient Perspectives on Telemedicine,\u201d (November 13, 2022, 10:30am ET) as part of the session, \u201cAdvancing Telemedicine in Rheumatology.\u201d One of the 2022 accepted scientific posters, \u201cHome-Based Telehealth in Rheumatology: A Systematic Review & Narrative Synthesis,\u201d also shares patient perspectives on telemedicine delivery.\n<\/p>\n

\n\u201cPatients 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,\u201d stated Dr. Nowell, who is also the principal investigator of the ArthritisPower\u00ae<\/a> Research Registry and an author of the above referenced poster. \u201cSessions 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.\u201d\n<\/p>\n

\n\u201cSpanish-Language First\u201d Materials May Improve Health Outcomes in the Hispanic Community<\/b>\n<\/p>\n

\nDuring the ACR Convergence, CreakyJoints will present two posters summarizing findings from the ongoing Hispanic Outreach Program Effect\u2013Culturally Appropriate Education (HOPE\u2013CAPE) study, which focuses on cultural training for rheumatologists, and education for people with rheumatoid arthritis (RA) who identify as Hispanic. In \u201cExploring Patient Journeys and Education Needs of Hispanic Individuals with Rheumatoid Arthritis,\u201d<\/a> 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 \u201ccures\u201d 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.\n<\/p>\n

\n\u201cOur program materials were written using conversational, idiomatic Spanish, which patients found more useful and trustworthy than materials simply translated from their original English,\u201d said Daniel Hernandez, MD, Director of Medical Affairs and Hispanic Outreach, Global Healthy Living Foundation, and lead study author. \u201cIn 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.\u201d\n<\/p>\n

\nIn \u201cPatient Perspective of Unique Support and Education Needs of Latinx\/Latino(a)\/Hispanic Rheumatoid Arthritis Patients: Implications for a Culturally Tailored and Disease Specific Intervention<\/a>,\u201d GHLF collaborated with researchers at Hospital for Special Surgery (HSS), New York City, on a <\/i>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\u2019 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.\n<\/p>\n

\nDr. Hernandez added, \u201cThough 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.\u201d\n<\/p>\n

\nScientific Posters by CreakyJoints at the ACR Convergence 2022:<\/b>\n<\/p>\n