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

ArthritisPower® and CreakyJoints® Data Featured in One Oral
Presentation and Seven Posters at 2018 ACR/ARHP Annual Meeting

UPPER NYACK, N.Y.–(BUSINESS WIRE)–#ACR18–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.

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,

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

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

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

About ArthritisPower®
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 www.ArthritisPower.org.

About 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 www.CreakyJoints.org,
and the 50-State
, which includes more than 1,200 trained volunteer patient

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 www.CreakyJoints.org.


For CreakyJoints
Jessica Daitch, 917-816-6712


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