CreakyJoints® and ArthritisPower® data published in ACR Open
Rheumatology
UPPER NYACK, N.Y.–(BUSINESS WIRE)–lt;a href=”https://twitter.com/hashtag/RA?src=hash” target=”_blank”gt;#RAlt;/agt;–Today, CreakyJoints®,
a Global
Healthy Living Foundation patient community, reported study results
suggesting that infertility, alongside potentially outsized fear and
anxiety related to their diagnoses, may affect the family sizes of women
with inflammatory arthritis. “Pregnancy, Periods, and ‘The Pill’:
Exploring the Reproductive Experiences of Women with Inflammatory
Arthritis,” was recently published in ACR Open Rheumatology, a
peer-reviewed publication of the American College of Rheumatology.
The study found that most women with inflammatory arthritis (60 percent)
wanted fewer children as a direct result of their diagnosis. Some of the
reasons women limited their family size were related to concerns about
their ability to care for children (85 percent), fear that antirheumatic
drugs might harm a fetus or infant (61 percent), concern that their
child might inherit arthritis (52 percent) or that arthritis might cause
their premature death so that she might not be able to raise her child
(34 percent), among others. Of those who did not have fears that reduced
their planned number of children (37 percent), more than half of those
women had borne all their children before diagnosis (51 percent). The
study also found that 40 percent of the surveyed women reported
infertility, which mirrors other studies showing that women with
inflammatory arthritis are at increased risk for infertility.
“Despite significant improvements in the identification and treatment of
inflammatory arthritis, this study suggests that the diagnosis all by
itself makes women rethink how they want to build their families,” said
Megan E.B. Clowse, MD, MPH, a rheumatologist at Duke School of Medicine
who led the research team. “As physicians, we need to do a better job
addressing patients’ concerns about perceived childbearing risks related
to disease onset and treatment. Most existing studies show that women
with inflammatory arthritis can have healthy pregnancies and children,
particularly if their disease is well controlled at the time of
conception. We’d also benefit from studying more closely why women with
inflammatory arthritis seem to experience increased risk for
infertility.”
Women Sensitive to Monthly Flares
Nearly half of women (49
percent) also reported that they experienced arthritis flares over the
course of their menstrual cycle and of those nearly all (96 percent) had
worse disease activity in the days before or during menstruation. Oral
contraceptive pills (OCPs) were the most common birth control method
used by women in the survey sample (52 percent). Most (82 percent) did
not observe or were unsure whether OCPs had any effect on their disease
activity, but nearly 10 percent reported that OCPs improved their
arthritis symptoms. In open-ended responses, several survey participants
reported a disease management strategy that included taking OCPs daily
(skipping the sugar pills meant to induce menstruation), which had the
effect of reducing their experience of flares.
“We surveyed women about menstruation and arthritic disease flares
because our research registry community leaders, the ArthritisPower
Patient Governors, raised colloquial concerns they had heard – via blogs
or other unverified sources – that OCPs could worsen inflammatory
arthritis. Yet data from several clinical studies, and now this one,
instead suggest that OCPs likely have no ill effect on inflammatory
arthritis disease activity and may even improve it for some,” said W.
Benjamin Nowell, Ph.D., Director of Patient-Centered Research at
CreakyJoints, principal investigator of ArthritisPower and study
co-author.
Seth Ginsberg, president and co-founder of CreakyJoints and also a
principal investigator of ArthritisPower added, “What makes
ArthritisPower Research Registry unique is that it includes
patient-leaders who help shape research priorities and even contribute
significantly as members of the research team as the patient coauthors
in this study did. This study points to a greater need for reproductive
health education in women with inflammatory arthritis.”
Study Design
In partnership with researchers from Duke
University, CreakyJoints developed an ArthritisPower based
cross-sectional online survey consisting of 183 questions primarily
formatted as multiple-choice responses, but which also included several
optional short-answer responses. The questions assessed patients’
experiences with pregnancy, miscarriage, or infertility; historical
medication use before and during pregnancy; contraception; menstruation;
engagement with primary care providers and subspecialists; preferred
resources for reproductive health information; and myths and perceptions
related to inflammatory arthritis and pregnancy, childbearing, and
disease-modifying antirheumatic drug (DMARD) use. The survey included
female patients ages 18-50 who were registered members of ArthritisPower
or CreakyJoints, provided they had a diagnosis of inflammatory arthritis.
Of the 15,332 recruitment emails sent, 416 patients (2.7%) expressed
interest in participating in the study, and 267 women met eligibility
criteria. Participants were an average of 39.6 years old (SD=7.1 years)
at the time of survey completion and had been an average of 27.2 years
old (SD=12.3 years) at the time of their arthritis diagnosis. Most women
identified as white (84%), and 9% of women reported Hispanic ethnicity
in addition to white, black, multiracial, or other race. Over two-thirds
of women had attained at least a college degree (69%). Twenty-seven
percent of women (n=71) had pregnancies after their disease diagnosis,
with a range of 1-5 pregnancies postdiagnosis. The most common of the
inflammatory arthritides in the sample included RA (79%), followed by
juvenile idiopathic arthritis (JIA) (14%), psoriatic arthritis (11%),
ankylosing spondylitis (9%), and inflammatory bowel disease
(IBD)-associated arthritis (6.4%). Nearly all women had used at least
one conventional or biologic disease-modifying antirheumatic drug
(DMARD) prescribed for inflammatory arthritis (93%).
CreakyJoints Patient Guidelines Target Family Planning
“Raising
the Voice of Patients: A Patient’s Guide for Pregnancy and Family
Planning with Rheumatic Diseases,” is available for free download at
CreakyJoints.org. Similar to other editions in the patient guidelines
library, it was written by patients and CreakyJoints staff writers and
reviewed by rheumatologists to make sure it provides comprehensive,
unbiased information about the management and treatment of arthritis,
with emphasis on family planning.
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 to access registry data or
solicit the community to participate in unique, voluntary studies. To
learn more and join ArthritisPower, visit www.ArthritisPower.org.
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 through our popular social media
channels, our website www.CreakyJoints.org,
and the 50-State Network, which includes more than 1,500 trained
volunteer patient activists.
As part of the Global
Healthy Living Foundation, CreakyJoints also has a patient-reported
outcomes registry called ArthritisPower® with more than 18,000 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 navigational tools for managing chronic illness. For
more information and to become a member (for free), visit www.CreakyJoints.org.
To participate in our patient-centered research program, visit www.ArthritisPower.org.
Contacts
Jessica Daitch
Phone: 917-816-6712
Email: [email protected]
