New Study: Infertility and Anxiety about Diagnosis Diminish Family Size in Women with Arthritis

CreakyJoints® and ArthritisPower® data published in ACR Open Rheumatology

UPPER NYACK, N.Y.--()--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 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

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, 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 To participate in our patient-centered research program, visit


Jessica Daitch
Phone: 917-816-6712

Release Summary

CreakyJoints® study finds that infertility, alongside fear and anxiety related to their diagnoses, may diminish family size in women with arthritis.


Jessica Daitch
Phone: 917-816-6712