CreakyJoints Reports that Patients Living with Axial Spondyloarthritis Often Choose Treatment Escalation Due to Inadequate Disease Control


CreakyJoints Reports that Patients Living with Axial Spondyloarthritis Often Choose Treatment Escalation Due to Inadequate Disease Control

PUBLISHED 11/18/21





Jessica Daitch

Phone: 917-816-6712

Email: [email protected]


ArthritisPower Study Published in ACR Open Rheumatology


UPPER NYACK, NY (November 18, 2021) – Today CreakyJoints®, the digital, international patient community for people with all forms of arthritis and part of the Global Healthy Living Foundation, announced a new peer-reviewed article showing that three-fifths of people living with axial spondyloarthritis (axSpA) discussed treatment changes with their health provider team at their last visit because they felt their symptoms were not well controlled. Published in ACR Open Rheumatology, “Treatment Satisfaction and Decision-making from the Patient Perspective in Axial Spondyloarthritis: Real-World Data from a Descriptive Cross-sectional Survey Study from the ArthritisPower Registry,” is among the first studies to quantify the perspectives of people living with axSpA regarding their treatment journey.

At their most recent physician visit, more than half of all respondents (56.9%, n=159) discussed a treatment change, with most (79.5%) having researched a change on their own and nearly half (46.2%) reporting that they needed to proactively raise the issue to their clinician. The most common discussion point focused on escalating treatment (69.2%, changing medicines or increasing dose) versus de-escalating (27.6%, reducing dosage) or switching (39.1%) treatments. Notably, the majority of participants (85.3%, n = 133) who discussed a treatment change agreed to it, with most (73.1%) reporting that they agreed because their disease was not controlled by their previous treatment or because they thought it could be better controlled by a change in treatment. The primary reasons for declining a change in treatment related to not believing there were more effective treatment options or worries about potential side effects of the new treatment. The top symptoms driving treatment changes overall were pain in back or buttock, pain in other joints, and fatigue.

“This study makes it clear that there are unmet treatment needs in the axial spondyloarthritis patient community,” said senior author Jessica A. Walsh, MD, rheumatologist and Associate Professor at University of Utah and George E. Wahlen Veterans Affairs Medical Center in Salt Lake City, Utah. “In the future, we need to identify the tools that this specific arthritis community needs to ensure that shared decision-making about disease management and treatment escalation is working effectively between the patient and the provider.”

Medication Choices Drive Satisfaction

Most patients who were treated on bDMARD (n=128) reported being somewhat satisfied (54.7%, n = 70) or very satisfied (20.3% [n = 26) with their current axSpA treatment and more than half (53.1%, n=68) were satisfied with how well it controls axSpA-related pain. Moreover, participants who were overall very satisfied with treatment (n=34/274) were more often on a bDMARD (76.5%, n=26/34) than not on a bDMARD (23.5%, n=8/34). Current bDMARD users also prioritized the prevention of long-term consequences and their physician’s advice in their decision-making process. However, among all 274 participants, more than one-third (43.4%, n=119) were somewhat or very dissatisfied with their treatment. Among this group, most had discussed a treatment change at their last visit (63.0%, n=75). Regardless of the level of treatment satisfaction, most participants (85.3%, n=113) agreed to the treatment change when one was discussed. Overall, most patients agreeing to a treatment change made their decision before the end of their provider visit, but more than one third (34.6%) needed additional time after their visit to make a decision.

“As far as we know, this is the first study in axial spondyloarthritis to look at treatment decision-making from the patient perspective, meaning this is our first quantitative analysis to examine how patients think about important disease management decisions and communicate with their doctor about their care,” said W. Benjamin Nowell, PhD, Director, Patient-Centered Research, CreakyJoints and principal investigator of ArthritisPower. “Although the reasons for suboptimal disease control were not comprehensively assessed in this study, the fact that the majority of treatment changes were escalations suggests that patients seek better control of their axSpA symptoms.”

Study participants were recruited from CreakyJoints’ ArthritisPower Research Registry. Of the 274 participants, the mean age was 49.9 (SD 11.1) years, 239 (87.2%) were female, and 234 (85.4%) were white. The majority of participants (225 [82.1%]) had been diagnosed with axSpA by a rheumatologist and, on average, participants experienced a gap of 10 or more years from when they reported first noticing axSpA symptoms (mean [SD] age 29.7 [13.2] years) and receiving an initial axSpA diagnosis by a physician (mean [SD] age 40.4 [12.1] years). Lower treatment satisfaction was significantly associated with having a college degree or higher, having a higher body mass index, having current peripheral arthritis, and not currently being on a bDMARD (P < 0.01).

This study was sponsored by Eli Lilly and Company.

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

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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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