FOR IMMEDIATE RELEASE
This Study and Others Presented at the EULAR European Congress of Rheumatology 2022
UPPER NYACK, NY (June 1, 2022) – Today CreakyJoints®, the digital, international patient community for people with all forms of arthritis and part of the Global Healthy Living Foundation, is presenting data demonstrating that patient satisfaction scores, using a typical Likert scale, are affected by social and cultural norms in the Spanish-speaking population with rheumatoid arthritis (RA) in the United States and Puerto Rico. “Do Patient and Physician Assessments of a Health Care Visit Match for Hispanic/Latinx Patients with Rheumatoid Arthritis in the United States and Puerto Rico?” is being presented in-person and virtually during the 75th anniversary of the EULAR European Congress of Rheumatology in Copenhagen as part of the EULAR PARE (people with arthritis/rheumatism across Europe) track presented by the European Alliance of Associations for Rheumatology, June 1-4, 2022.
The study aimed to validate a Spanish-language patient-provider questionnaire (PPQ) for Hispanic/Latinx patients with RA that had previously been validated in a study done in Sweden and to understand if rheumatologist and patient assessments for Hispanic/Latinx people with RA are concordant when using a Spanish-language digital PPQ. The survey was made available on tablet devices in four rheumatology clinics in the U.S. and Puerto Rico. Across 114 clinical visits, 96.75 percent of possible answers were recorded and were almost invariably positive on items related to goal setting and relationships, with scores of five (strongly agree; 88%), four (agree; 12%), or three (neither agree nor disagree; 0.09%). Physicians responded with 4 (agree) more often than patients (18% vs 6% of responses). Within these paired answers, 80.67 percent were concordant.
“Given the high levels of agreement between patients and physicians, which researchers found problematic for several reasons, we suggest that the PPQ may not be a good proxy measure for patient-reported outcomes,” said Daniel Hernandez, MD, Director of Medical Affairs and Hispanic Outreach for the Global Healthy Living Foundation. “These results provide valuable information about how cultural norms within the Hispanic community in the U.S. and Puerto Rico, such as a social-desirability bias toward positive statements about physician-patient interactions, require us to dig deeper to create measures that work specifically for this patient population.”
Research, already in progress at CreakyJoints Español, measuring the effectiveness of Spanish language, culturally relevant RA education materials for newly diagnosed patients may help to shape future tools and, ultimately, improve RA outcomes. The research presented at EULAR and the additional in-progress research is supported by a grant from Bristol-Myers Squibb Foundation.
People With Rheumatic Disease Prioritize Information on Medication and Prognosis
Also being presented at EULAR 2022 in a poster presentation is the study titled, “Education topics and smartphone app functions prioritized by people with rheumatic and musculoskeletal diseases,” which identified what types of information US adults with rheumatic and musculoskeletal disease (RMD) perceive as important to know about in their own words and how they prioritize such information.
In this study, focus groups (6 groups, n=47) first identified sets of rank-order educational items, which were then aggregated across groups into themes. Then, a survey (n=570) with the final 28 items was administered via CreakyJoints’ ArthritisPower Research Registry in January 2022. Rheumatoid arthritis (52.5%), osteoarthritis (16.0%), psoriatic arthritis (12.5%), and axial spondyloarthritis (7.5%) were the most common RMDs reported by study participants. Regarding educational components, the study found that knowing how to tell when a medication is not working, how RMD affects other medical conditions, understanding the results of tests used to monitor their RMD, available treatment options and possible side effects, and how life will change as an RMD progresses were each items that greater than 75 percent of participants considered extremely important. When asked what functions would be most useful to include in a smartphone app for people living with rheumatic conditions, about half of participants wanted to be able to participate in research, to view lab results, and to record their symptoms or flares and 40 percent said they would like to get educational information about their disease from the app. On the flip side, 15 percent of participants indicated that they’d have no interest in using a smartphone app for their rheumatologic condition.
“This study validates what we understood anecdotally from the 35,000+ community of people living with RMDs who already use the ArthritisPower application to track their experience of managing and treating their disease,” said W. Benjamin Nowell, PhD, Director, Patient-Centered Research and principal investigator of ArthritisPower at the Global Healthy Living Foundation. “People living with lifelong, chronic disease want to help researchers study their disease, and to better understand and track how the decisions they are personally making about medications and complementary management strategies affect their experience of disease and their quality of life.”’
In March 2022, CreakyJoints announced a completely redesigned version of the free ArthritisPower Research Registry application to improve overall useability and increase the volume of educational resources available to users. During the development phase, CreakyJoints interviewed users and then conducted confirmatory market research to ensure that planned enhancements met the needs of the CreakyJoints community. ArthritisPower is available in both English and Spanish.
CreakyJoints is presenting these four studies at EULAR 2022:
- Do Patient and Physician Assessments of a Health Care Visit Match for Hispanic/Latinx Patients with Rheumatoid Arthritis in the United States and Puerto Rico? (Abstract: AB1585-PARE)
- Education topics and smartphone app functions prioritized by people with rheumatic and musculoskeletal diseases (Poster: POS1564-PARE)
- Understanding Heterogeneity in Patients’ Conceptualization of Treatment for Rheumatoid Arthritis: A Cluster Analysis (Abstract: AB1584-PARE)
- Changes in Patient-Reported Outcome Scores During the COVID-19 Pandemic: Data from the ArthritisPower Registry (Poster: POS0088-PARE, selected as part of the poster tour)
About Arthritis Power
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:
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