CreakyJoints Data Finds that Patients Prioritize Their Physician’s Treatment Goals Over Their Own


CreakyJoints Data Finds that Patients Prioritize Their Physician’s Treatment Goals Over Their Own






Jessica Daitch

Phone: 917-816-6712

Email: [email protected]


ArthritisPower Study Suggests New Approach Needed to Inform Patient-Centric Treatment Strategy

UPPER NYACK, NY (January 21, 2020) –  CreakyJoints®, a Global Healthy Living Foundation patient community, today announced the publication of study results describing the barriers people living with rheumatoid arthritis face in modifying their treatment even when experiencing high disease activity, and why they tolerate suboptimal disease control. “Barriers to treatment optimization and achievement of patients’ goals: perspectives from people living with rheumatoid arthritis enrolled in the ArthritisPower registry” published online in Arthritis Research & Therapy (January 7, 2020).

Treatment goals prioritized by participants (=249), irrespective of disease activity, were to reduce joint pain and swelling, minimize fatigue, and improve physical function. But among participants who had high disease activity at baseline (n = 175), only 66 (38%) participants were offered a treatment change by their rheumatologist at their most recent appointment, which the majority (71%) accepted. Physician recommendation was a major reason given by participants for intensifying (42%) or scaling back treatment (60%). The most common reason (66%) for deciding not to change treatment was the participant’s perception of their rheumatologist’s satisfaction with the current therapy. Even when participants were offered a treatment change, some of them decided against the change. The main reason participants did not change their treatment was that their doctor said it was okay not to change (e.g. they were doing ‘well enough’).

“We found that participants seldom changed RA therapies because they failed to reach treatment goals; instead, treatment was more commonly changed due to continued severe, or even worsening, RA symptoms,” said W. Benjamin Nowell, Ph.D., Director of Patient-Centered Research, CreakyJoints and ArthritisPower principal investigator. “Yet, even in the face of escalating symptoms, our study showed that patients defer to their physicians’ recommendations regarding whether it is time for a treatment change. Given our findings, we need to find ways to encourage and empower patients to talk to their doctors about how to achieve their treatment goals.”

In addition, the majority of participants in high disease activity (68%) valued being actively involved in making decisions about their treatment, but reported that while they were likely to talk to their doctor, seek out information online and make lifestyle changes (related to diet, exercise or sleep, for example), in the event their symptoms didn’t feel well managed, many (20%) believed that their doctor’s goals for RA treatment were not in line with their own. Nearly a quarter (24%) said that their rheumatologist had not communicated treatment goals to them.

Traditional RA Disease Activity Measures May Not Work for Patients

The study also found that patients’ treatment decisions may be influenced by their perception of their disease activity. When asked to self-rate their disease activity, most participants who rated their disease activity as low or moderate had high RAPID3 disease activity (weighted kappa [95% CI]: 0.05 [− 0.01, 0.11]). By contrast, there was a moderate agreement between participants’ self-assessed levels of pain interference (weighted kappa [95% CI]: 0.44; [0.35, 0.52]), fatigue (weighted kappa [95% CI]: 0.36; [0.28, 0.44]), and sleep disturbance (weighted kappa [95% CI]: 0.25; [0.19, 0.31]) and the corresponding PROMIS measurement.

“Our study suggests that the RAPID3 may not be very informative when setting treatment goals from a patient’s perspective. We found a higher level of agreement between participant’s self-assessed level of pain, fatigue, and sleep disturbance and the corresponding PROMIS measurement than was observed between self-assessment of disease activity with the RAPID3,” said Kelly Gavigan, MPH,  Manager, Research and Data Science at CreakyJoints and lead study author. “We need to consider the patient perspective and how they prioritize and measure their experience of RA symptoms when identifying and tracking against treatment goals.”

Study Design

The observational, cross-sectional study included 249 ArthritisPower participants who had physician-diagnosed RA, had not changed their RA treatment within 3 months prior to taking the survey, were currently on a disease-modifying antirheumatic drug (DMARD) treatment or had previously taken DMARDs, and had access to a computer or smartphone. Mean age (SD) was 52 (11) years, and the majority were female (92%) with high RAPID3 disease activity (175/249 [70%]; median score 18).  Eligible participants completed four patient-reported outcome (PRO) measures included in the Patient-Reported Outcomes Measurement Information System Computerized Adaptive Tests (PROMIS-CATs): Pain Interference, Fatigue, Sleep Disturbance, and Physical and the Routine Assessment of Patient Index Data 3 (RAPID3; 0–30 scale) questionnaire as a patient-reported measure of disease activity.

Participants were then asked to complete a custom online survey concerning barriers to treatment optimization. Intensification of treatment was defined as an increased dose or frequency of administration of current medication, or the addition of, or switch to, a new medication. As part of this survey, participants were also asked to describe their overall RA disease activity in the 7 days prior to completing the survey as “none/low,” “medium,” or “high.”

This ArthritisPower study was sponsored by UCB Pharmaceuticals.

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 through our popular social media channels, our website, and the 50-State Network, which includes more than 1,500 trained volunteer patient, caregiver and healthcare activists.

As part of the Global Healthy Living Foundation, CreakyJoints also has a patient-reported outcomes registry called ArthritisPower® ( with nearly 25,000 consented arthritis patients who track their disease while volunteering to participate in longitudinal and observational research. CreakyJoints also publishes the popular “Raising the Voice of Patients” series, which are downloadable patient-centered educational and navigational tools for managing chronic illness, and hosts PainSpot (, a digital risk assessment tool for musculoskeletal conditions and injuries. For more information and to become a member (for free), 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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