New ArthritisPower Data Highlights Contradiction Between Patients Expressing Satisfaction with Treatment Despite Breakthrough Symptoms


New ArthritisPower Data Highlights Contradiction Between Patients Expressing Satisfaction with Treatment Despite Breakthrough Symptoms




CreakyJoints Data Presented at the EULAR European Congress of Rheumatology 2021

UPPER NYACK, NY (June 4, 2020) – 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 from two posters that show people living with autoimmune forms of arthritis appreciate the effect of their medication and express satisfaction with disease control, but nevertheless experience ongoing symptoms (such as pain), notice the effect of their medicine wearing off before their next dose, and express preferences about mode of treatment administration. In an oral presentation, CreakyJoints will also report on the positive impact of mindfulness training on symptoms of emotional distress among people living with rheumatic musculoskeletal diseases. These data are being shared virtually during the EULAR European Congress of Rheumatology 2021 as part of the EULAR PARE (people with arthritis/rheumatism across Europe) track presented by the European Alliance of Associations for Rheumatology starting June 2-5, 2021.

The poster titled, “Patient perspectives of biologic treatments for axial spondyloarthritis (axSpA): satisfaction, wear-off between doses, and use of supplemental medications,” characterized patient experiences with biologic disease-modifying antirheumatic drugs (bDMARDs). Using CreakyJoints’ ArthritisPower research registry, most patients on a bDMARD (n=128) reported being somewhat (58%) or very satisfied (27%) with their current axSpA treatment, and more than half (53%) were satisfied with how well their bDMARD controls axSpA-related pain. On the other hand, nearly two-thirds (61%, n=78) of participants reported that their current bDMARD typically wears off before the next dose and, among those reporting medication wear-off, 82 percent (n=64) reported using additional medications or supplements to help with symptoms, mainly NSAIDs (69%), muscle relaxers (42%), and/or opioids (38%). Treatment satisfaction was lower for participants experiencing wear-off compared to those without wear-off. Scores for BASDAI and PROMIS Sleep Disturbance were significantly worse in participants experiencing bDMARD wear-off than participants not experiencing it. Using a patient reported outcome, the study found that the mean BASDAI scores indicated poor disease control (6.4, SD 1.8), which was worse for those perceiving wear-off between doses compared with those who did not [6.8 (1.6) vs. 5.9 (2.0), p=0.01].
“This poster demonstrates that people living with axSpA are paying close attention to their experience of disease symptoms and how well it is managed, particularly since some are adding supplemental medications and therapies to their regimen when their primary biologic wears off,” said senior author and rheumatologist Jessica Walsh, MD, University of Utah School of Medicine and George E. Wahlen Veteran Affairs Medical Center. “Patients expect more from their axSpA treatment. Future research needs to address how patients manage breakthrough symptoms in axSpA and what prompts them to seek a new treatment strategy.”

This study was supported by Eli Lilly and Company, Global Patient Outcomes and Real World Evidence, Lilly Bio-Medicines.

In the poster titled, “Real-world patient experience and treatment preferences in patients with psoriatic arthritis (PsA),” a cross-sectional, web-based ArthritisPower survey evaluated disease burden and treatment preferences in people living with PsA (n=332). Patients reported joint pain-related symptoms (e.g., joint, lower back or spine, and enthesitis-related pain) as the most bothersome, while the least bothersome symptoms were psoriasis-related. In thinking about the impact of their treatment, patients most wanted to improve the ability to perform physical activities, followed by ability to live/function independently, quality of sleep, and ability to do daily activities. Nearly two-thirds of respondents preferred a treatment regimen for PsA that does not include methotrexate, with the most common reasons for methotrexate dissatisfaction being its known bothersome side effects and a lack of effectiveness. When asked to choose among four different modes of treatment administration (an oral tablet once daily or twice daily, or subcutaneous injection once monthly or twice monthly) which were assumed to be equally safe and efficacious, the method preferred by the most patients was a once daily tablet (38%) followed by a once monthly injection (25%) or no preference (26%).

“It’s important to understand how people living with PsA experience common symptoms, such as pain, stiffness, and fatigue, as well as their goals for treatment so that we can develop new management strategies that reflect their preferences” said lead author Alexis Ogdie, MD, Associate Professor of Medicine and Epidemiology and rheumatologist at the University of Pennsylvania. “In the rheumatology setting, the majority of patients appear to be most bothered by joint pain-related symptoms and place the most importance on improving their physical functioning and the ability to independently go about their day to day lives. We also found that many patients with PsA do not have a great experience with methotrexate and many prefer oral to injectable treatment options.”
This study was support by AbbVie, Global Health Economics and Outcomes Research, Rheumatology.

Managing Emotional Distress Through Mindfulness

There is increasing appreciation for the usefulness of mindfulness-based interventions to manage chronic pain and emotional distress. In an oral presentation titled, “A mindfulness program dosing study to evaluate improvement in emotional distress among people with rheumatic disease,” the authors wanted to understand what duration of mindfulness training was necessary to be effective for short- and long-term benefit in patients with rheumatic and musculoskeletal disease.

The Healthy Mind Health You study included 324 participants recruited from the ArthritisPower research registry and compared the effectiveness of two mindfulness training programs of different lengths (8 weeks vs. 3 weeks) accessed online. Participants were randomized to one of the two program durations and completed assessments every two weeks during the program, and then every four weeks during the 12-week follow-up period. Patients completing the study were primarily female (90%) and white (85%), and most (67%) were between the ages of 45-64 years. Of the 604 individuals who responded to an email invitation and clicked through a link to participate in the study , 324 completed baseline assessments, but only 70 participants completed the 8-week program, an attrition rate of 78 percent. No statistically significant differences were observed at baseline between participants randomized to each of the two programs, and in their assessment scores at week 8. PROMIS Anxiety and Depression scores improved from baseline to week 8 in both programs. Overall, mean (SD) PROMIS Anxiety scores improved from 58.4 (7.7) at baseline to 55.4 (7.2) at week 8 (p=0.018), a minimally important difference, among the 70 pts reporting scores at both time points.

“This study suggests that people living with rheumatic and musculoskeletal disease can benefit from mindfulness meditation, particularly for coping with emotional distress. Even an abbreviated program of mindfulness training helps,” said lead author W. Benjamin Nowell, PhD, Director, Patient-Centered Research, CreakyJoints and principal investigator of ArthritisPower. “However, we need to determine why so few participants stuck with the study, and therefore the training, and find ways to encourage people living with rheumatic disease to complete mindfulness training. This is especially important if we anticipate that participants will see personal benefit from that training.”

Full List of Studies:

  • Poster: Patient perspectives of biologic treatments for axial spondyloarthritis: satisfaction, wear-off between doses, and use of supplemental medications (POS1499-PARE); Wednesday, June 2 08:00 CEST – Saturday, June 5, 2021 23:59 CEST
  • Poster: Real-World Patient Experience and Treatment Preferences in Patients With Psoriatic Arthritis (POS0062-PARE); Thursday, June 3, 2021, 12:20-12:26 PM CEST
  • Oral Presentation: A mindfulness program dosing study to evaluate improvement in emotional distress among people with rheumatic disease (OP0280-PARE) Friday, June 4, 2021, 11:20-11:27 AM CEST

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 rheumatological manifestations of gastrointestinal-tract (GI) 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

About CreakyJoints
CreakyJoints® is a digital community for millions of arthritis patients and caregivers worldwide who seek education, support, advocacy, and patient-centered research. We represent patients in English and Spanish through our popular social media channels, our websites, and the 50-State Network, which includes more than 1,600 trained volunteer patient, caregiver, and health care activists.

Part of the Global Healthy Living Foundation, CreakyJoints also has a patient-reported outcomes registry called ArthritisPower® (, which includes tens of thousands of consented arthritis patients who track their disease while volunteering to participate in longitudinal and observational research. CreakyJoints publishes the popular “Raising the Voice of Patients” series, which offers downloadable patient-centered educational and navigational tools for managing chronic illness. It also hosts PainSpot (, a digital risk-assessment tool for musculoskeletal conditions and injuries, and eRheum (, for telehealth and virtual-care support. All programming is free, always. For more information and to become a member, visit

Media Contact: Jessica Daitch | Phone: 917-816-6712 | Email: [email protected]

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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 e!orts 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 digital community for millions of arthritis patients and caregivers worldwide who seek education, support, activism, and patient-centered research through our ArthritisPower® ( 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 30,000 people. Via CreakyJoints, GHLF also hosts PainSpot (, a digital risk-assessment tool for musculoskeletal conditions and injuries, and eRheum (, for telehealth and virtual-care support. Visit for more information.

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