First Ever Study of RA Patient Attitudes on Bloodwork to Predict Future Treatment Presented by CreakyJoints

FOR IMMEDIATE RELEASE  

MEDIA CONTACT

Jessica Daitch

Phone: 917-816-6712

Email: [email protected]

This Study and Others Presented at the EULAR European Congress of Rheumatology 2023

UPPER NYACK, NY (May 31, 2023) – CreakyJoints®, the digital, international patient community for people with all forms of arthritis and part of the Global Healthy Living Foundation, will give an oral presentation of the first ever assessment of the perspectives of people with RA on disease-related lab testing and its role in treatment decision-making alongside two additional posters during the 76^th EULAR European Congress of Rheumatology presented by the European Alliance of Associations for Rheumatology, May 31-June 3, 2023 in Milan, Italy.

The presentation titled, “Patient Perceptions of Rheumatoid Arthritis Blood Work and Utility of a Test Predicting Response to New Medication: A Cross-sectional Survey in the ArthritisPower,” (June 2, 10:30am-12:00pm CEST) includes results from a recent survey (n=405) that asked patients to share their perceptions about RA bloodwork, reasons their doctor orders these tests, and how results are used. Most patients understood that their doctor ordered laboratory tests to check for active inflammation (85.9%) or assess side effects of medications (81.2%). Most feared (91.4%) that their current RA medication would stop working and that they would waste time trying to find (81.7%) an alternative, effective therapy. Of the many lab tests available, most patients felt that the C-reactive protein (CRP) test was most helpful to themselves to understand their disease activity. In the event of needing to start a new treatment, nearly all patients were very or extremely interested in a blood test that could help to accurately predict whether such new medication would be effective (89.2%).

“To feel engaged in treatment decision making, people living with RA need to understand why their rheumatologist orders tests and how the results are used to guide choices about care,” explained lead author W. Benjamin Nowell, PhD, Director, Patient-Centered Research and principal investigator of the ArthritisPower Research Registry. “This study demonstrates that patients understand the value of bloodwork, even when they may not fully comprehend how to interpret results and apply them to decisions about care and treatment. Moreover, people living with RA worry about the trial and error process of RA treatment, especially if it means wasting time on a new medication that doesn’t work for them. It also points to the need for biomarker tests that can predict which types of medications are most likely to be effective for an individual patient, a goal of personalized medicine.”

Psoriatic Arthritis (PsA) Patients Seek Wellness Programs, But Face Barriers

A poster titled, “Managing Psoriatic Arthritis: Patients’ Views and Attitudes to Using an Online Wellness Program,” reports results from a recent ArthritisPower survey (n=312) finding that nearly all (90%) of patients were ‘somewhat likely’ or ‘very likely’ to interact with an online coach at least twice (90.4% and 92.6%, respectively) if they had the opportunity to take part in a wellness program. However, only 8.7 percent were currently participating in a wellness program. Barriers to participating to learn more about nutrition, exercise, sleep, and stress management were cost and not having the energy to make changes. Each of these responses was selected by about half of patients (both 47.1%). About a third of patients expressed a preference for a wellness program that included direct online interaction with a trained professional (34.0%), followed by attending an online course (16.4%) and reading written material (16.0%).

“Successful treatment of any chronic disease, including psoriatic arthritis, requires a holistic approach that goes beyond diagnosis and taking medication,” said Shilpa Venkatachalam, PhD, MPH, Director, Patient-Centered Research Operations and Ethical Oversight and co-principal investigator of ArthritisPower. “This study tells us that while PsA patients are willing to add wellness education and lifestyle adaptations to their disease management strategy, those programs need to be both accessible and affordable to optimize participation.”

Mining Social Media Conversations Informs Understanding of Gout

A poster titled “Using Social Media Conversations to Understand Patient Care: Factors Driving Proactive vs. Reactive Management of Gout,” reports on an artificial intelligence analysis of social media conversations among gout patients (from a private Facebook group, The Gout Support Group of America (50,000 posts) and a public subreddit (125,000 posts) to evaluate how they discuss onset of symptoms (reactively) and disease management (proactively). Flares, pain, uric acid, and swelling were the most frequently mentioned in both proactive and reactive conversations. Reactive care gout conversations (n = 1253 posts/comments from 624 users) were associated with a significantly higher probability of mentioning ‘pain’ and ‘swelling’ and a significantly lower probability of mentioning ‘uric acid’ than were proactive care conversations (n =1205 posts/comments, 521 users). Reactive care statements had a significantly lower mean sentiment score, meaning that discussions about reactive care experiences tended to be more negative than those about proactive care.

“In this study, we analyzed real-world evidence though social media conversations and found that the onset of new symptoms (or a flare) was the primary motivator for individuals seeking reactive care, with conversations tending to be more negative around urgent care settings as patients reacted to their pain or swelling. These insights shed light on the importance of primary care in the management of gout,” said author Maria Picone, Founder and CEO of the TREND Community, an organization whose proprietary technology gleans patient community insights through social listening.

“By analyzing social media conversations, we have the potential to take the pulse of patient cohorts in real time, which can help us understand their experiences and needs better. The possibilities of this in healthcare are vast, and we are excited to collaborate in significantly contributing to improving patient care, communication, and disease management,” added Daniel Hernandez, MD, Director, Medical Affairs and Hispanic Outreach, Global Healthy Living Foundation.

CreakyJoints is presenting these three studies at EULAR 2023:

• Patient Perceptions of Rheumatoid Arthritis Blood Work and Utility of a Test Predicting Response to New Medication: A Cross-sectional Survey in the ArthritisPower (Abstract 3849)
• Managing Psoriatic Arthritis: Patients’ Views and Attitudes to Using an Online Wellness Program (Abstract 4080)
• Using Social Media Conversations to Understand Patient Care: Factors Driving Proactive vs. Reactive Management of Gout (Abstract 1625)

About ArthritisPower

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.

About Creakyjoints

CreakyJoints® is an international, digital community for millions of people living with arthritis and their supporters 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.

CreakyJoints’ patient-reported outcomes registry, ArthritisPower® (ArthritisPower.org), includes tens of thousands of consented arthritis patients who track their disease while volunteering to participate in longitudinal and observational peer-reviewed research. Always free, CreakyJoints publishes many educational articles and downloadable health education guides, plus produces arthritis and chronic disease podcast series 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 or its parent organization, the Global Healthy Living Foundation, an international, patient-centered, nonprofit organization whose mission is to improve the quality of life for people with chronic illness. CreakyJoints never asks patients for donations.

Find us online:

CreakyJoints: CreakyJoints.org

CreakyJoints Español: CreakyJoints.org.es

CreakyJoints Australia: CreakyJoints.org.au

CreakyJoints Canada: CreakyJoints.ca

Global Healthy Living Foundation: ghlf.org

Facebook: facebook.com/CreakyJoints & facebook.com/GlobalHealthyLivingFoundation

Twitter: @GHLForg, @CreakyJoints, #CreakyChats

Instagram: @creaky_joints, @creakyjoints_aus, @creakyjoints_esp

TikTok: globalhealthylivingfnd

YouTube: @GHLForg, @CreakyJoints

LinkedIn: linkedin.com/company/ghlf

Global Healthy Living Foundation Podcast Network: https://ghlf.org/patient-education/listen/

About Global Healthy Living Foundation

The Global Healthy Living Foundation is a 501(c)(3) nonprofit organization whose mission is to improve the quality of life for people with chronic illnesses (such as arthritis, osteoporosis, migraine, psoriasis, inflammatory bowel disease, and cardiovascular disease) by advocating for improved access to health care at the community, state, and federal levels, and amplifying education and awareness efforts within its social media framework. GHLF is also a staunch advocate for vaccines. The Global Healthy Living Foundation is the parent organization of CreakyJoints®, the international digital community for millions of arthritis patients and caregivers worldwide who seek education, support, activism, and patient-centered research in English and Spanish through our ArthritisPower® (ArthritisPower.org) Research Registry. In response to the COVID-19 pandemic, GHLF started a Patient Support Program, informed by a patient council made up of people living with a wide range of chronic illnesses, that now serves more than 46,000 subscribers. Via CreakyJoints, GHLF also hosts PainSpot (PainSpot.org), a digital risk-assessment tool for musculoskeletal conditions and injuries, eRheum (eRheum.org), for telehealth and virtual-care support, and a constantly refreshed library of podcasts via the GHLF Podcast Network. Visit ghlf.org for more information.