New Tool Under Development May Help Arthritis Patients Better Assess Risks and Benefits of Treatment Choices, Study Shows


New Tool Under Development May Help Arthritis Patients Better Assess Risks and Benefits of Treatment Choices, Study Shows

PUBLISHED 10/20/18



UPPER NYACK, N.Y.–(BUSINESS WIRE)–Study findings presented at the largest rheumatology meeting in the U.S. signal that people with arthritis may soon have information on overall outcome on a medication from a measure that combines the range of possible benefits and the full spectrum of potential side effects at the individual patient level.

@CreakyJoints and Yale researchers collaborate to develop new comparative measurement for risk/benefit of arthritis medications, as reported in our upcoming oral presentation (10/24, 9am CT). #ACR18 #arthritis #spoonie #RA

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This study, along with seven other poster presentations of studies conducted with CreakyJoints and the ArthritisPower research registry in partnership with major academic institutions, will be presented during the 2018 ACR/ARHP Annual Meeting in Chicago, IL, October 19-24, 2018.

“Based on their goals, a patient might be more willing to risk certain adverse events they consider “mild” or “livable,” if it means they can achieve their treatment target. But, currently, there is no existing resource to help people with rheumatoid arthritis (RA) and their doctors weigh the potential desirability of one medication compared to many other treatment options,” said Liana Fraenkel, M.D., MPH, Professor of Medicine (Rheumatology) at Yale School of Medicine and Section Chief of Rheumatology, VA Connecticut Healthcare System. “Our study aimed to develop a tool that will help RA patients compare the real-world experience of taking different medications, which is essential for informed treatment decisions.”

The Global Patient-Reported Outcome Measure (G-PROM) quantifies and compares the distribution of patients’ overall experiences on medications based on trajectory mapping. To inform the trajectory mapping, study authors surveyed participants with RA from the ArthritisPower research registry (n=195) who compared an adverse event (AE) as worse, better, or no better or worse than a referent AE. These data allowed for the construction of a rank ordering of “equivalence classes,” or groups of AEs judged by participants as having a comparable impact on quality of life.

A subsequent survey of ArthritisPower participants with RA (n=426), with similar demographic characteristics, were asked to indicate their preference for pairs of outcomes, where each outcome include both a specified level of benefit [little or no improvement, some improvement, and major improvement] and an AE. This resulted in a hierarchy of global outcomes from most preferable to least.

With further validation, study authors predict that G-PROM will enable randomized controlled trials to report the percentage of patients classified into each level; thus, providing patients and their rheumatologists with a much clearer understanding of the range and likelihood of the total effects of competing treatment options on their quality of life. “Development of a Rheumatoid Arthritis Global Outcome Measure to Enable Comparisons of Patient Experiences across Treatment Arms in Randomized Clinical Trials,” will be discussed in an oral presentation on Wednesday, October 24 at 9:00am Central.

ArthritisPower Research Registry Demonstrates Impact of Arthritis on Work Productivity
The ArthritisPower® Research Registry includes over 17,000 consented arthritis patients who participate in sub-studies focused on various topics of concern to patients and other stakeholders. Analysis of data from one such sub-study informs the first of two additional posters being presented at the 2018 ACR/ARHP Annual Meeting that focus on work productivity.

In a poster titled, “Examining Workplace Supports in the Context of RA Disease Activity,” study authors analyzed workplace characteristics and productivity of adults with physician-diagnosed RA from the ArthritisPower research registry. Patient-reported outcome measures were used to measure disease and symptom activity, in particular the Patient-Reported Outcome Measures Information System (PROMIS) questionnaires for pain interference, fatigue, sleep disturbance, physical function and social participation, and the Routine Assessment of Patient Index Data 3 (RAPID3) scores. All participants had a history of or current DMARD (non-biologic and biologic) use (n=296).

Among the study sample, 74 percent had high disease activity (HDA) as determined by RAPID3 (>12). Compared with non-HDA participants, HDA was associated with lower education (p<0.001) and higher likelihood of disability (9%, p<0.001). Participants with HDA missed more work days than those without HDA (mean: 6.1 vs 3.8 days, respectively; p=0.03), but non-HDA participants reported more days off due to medical appointments (2.6 vs 1.2 days, respectively) while HDA patients missed more days due to RA treatment side effects (mean: 0.5 vs 0.1 days, respectively).

RA affected work productivity to a greater extent in participants with HDA than without (WPAI scores 5.3 and 3.3, respectively; p<0.001). Participants who were not currently employed reported having more physically demanding tasks (e.g. heavy load lifting) and less workplace flexibility (e.g. working from home) in their most recent paid position than currently employed participants. Bristol-Myers Squibb provided support for the study.

Similarly, a poster titled, “Health-Related Quality of Life in Patients With Ankylosing Spondylitis in the United States,” found that adults with ankylosing spondylitis (AS) experienced high unemployment and a significant impact on their personal relationships. In the study, U.S. adults with a self-reported diagnosis of AS (n=235) were recruited through CreakyJoints to complete a web-based questionnaire on sociodemographic characteristics, clinical symptoms, disease burden, and the impact of AS on work productivity and relationships.The most common impacts of AS on relationships were difficulty spending time with friends (63 percent), lack of understanding from friends and family about AS (54 percent), and difficulty spending time with family (47 percent).

Half of respondents reported being unemployed and the vast majority (91%) reported this was due to AS. Among currently employed respondents (n=117), 72 percent reported difficulty sitting or standing for long hours, missed work (40 percent), difficulty doing physical tasks (42 percent), and loss of productivity (41 percent) related to AS. The study results may not be generalizable due to high proportion of female respondents and the nature of the web-based surveys. Despite these limitations, the study provides additional insights in regards to the impact of AS in female population, which are often under-studied as AS has been historically known to be more male-dominant condition. Novartis Pharmaceuticals Corporation provided support for the study.

“Despite the availability of DMARDs to treat both people with RA and AS, many patients remain significantly impacted by symptoms of their disease,” said W. Benjamin Nowell, Director of Patient-Centered Research at CreakyJoints, a principal investigator of ArthritisPower and the lead author of both posters. “The indirect costs of arthritis should be considered when determining the total cost of arthritis care, which points to a need for greater work flexibility policies and more education about treatments options for patients. Our organization is actively working to advocate for better understanding of patients’ experience of arthritis and to inform the patient community about their options.”

The full list of CreakyJoints posters and oral presentations to be presented at the 2018 ACR/ARHP Annual Meeting includes:

About ArthritisPower®
Created by CreakyJoints and supported by a multiyear, multimillion dollar investment by the Patient-Centered Outcomes Research Institute (PCORI), ArthritisPower is the first-ever patient-centered research registry for joint, bone, and inflammatory skin conditions. The free ArthritisPower mobile and desktop application allows patients to track and share their symptoms and treatments while also participating in voluntary research studies in a secure and accessible manner. ArthritisPower Patient Governors serve as gatekeepers for researchers who seek access to 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 and advocacy organization 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 1,200 trained volunteer patient advocates.

As part of the Global Healthy Living Foundation, CreakyJoints also has a patient-reported outcomes registry called ArthritisPower® with more than 17,000 consented arthritis patients who participate in longitudinal and observational research. CreakyJoints also publishes the popular series “Raising the Voice of Patients,” which are downloadable, patient-centered, navigational tools for managing chronic illness. 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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