UPPER NYACK, N.Y.--(BUSINESS WIRE)--Two studies demonstrate that women living with Rheumatoid Arthritis (RA) lack credible information and resources when making decisions related to their reproductive health and family planning. These studies, along with six others that were conducted in partnership with major academic institutions who surveyed the CreakyJoints membership or analyzed data from the ArthritisPower™ research registry, developed by CreakyJoints®, will be presented during the 2017 ACR/AHRP Annual Meeting in San Diego, California, November 4-8, 2017.
In a poster titled, “Answering reproductive health questions that your patients want to know: impediments to family building and risks of contraception (abstract #1308),” researchers from Duke University and CreakyJoints found that 59 percent of women with inflammatory arthritis surveyed (n=250), had fewer children than they desired while only a third had the full number they wanted. The most common fears limiting family size were being unable to care for a child (85%), arthritis medications potentially harming a child (61%), and a child developing arthritis (52%). Concerningly, 28 percent of women taking methotrexate, which carries risk for miscarriage and birth defects, were using ineffective contraception.
Those who made the decision to expand their family also had fears. Despite growing clinical evidence suggesting that many rheumatic medications may be compatible with pregnancy and lactation, a second abstract from the same study titled, “Tough Choices: Understanding the medication decision-making process for women with inflammatory arthritis during pregnancy and lactation (abstract #1298),” found that half of the women with inflammatory arthritis reported discontinuing arthritis medications during pregnancy and/or lactation, sometimes suffering escalating arthritis symptoms to avoid any perceived risk to the fetus or newborn. Of those wanting to breastfeed, 86 percent reported either stopping breastfeeding to take medications or avoiding medications to breastfeed.
“The findings show us that women with arthritis really worry about pregnancy and the impact that their disease and medications might have on their children. It is also clear that many of them aren’t informed about the current data and would benefit from better education and communication tools that specifically address these issues. My goal is to help women build the families that they want, and this study demonstrates that many women with arthritis aren’t there yet,” added Megan E.B. Clowse, MD, MPH, a rheumatologist at Duke School of Medicine who led the research team.
“Our study demonstrates that more research is needed to better understand how women seek to balance inflammatory arthritis treatment with family planning,” said W. Benjamin Nowell, PhD, Director of Patient-Centered Research at CreakyJoints, principal investigator of ArthritisPower and a co-investigator on the reproductive concerns studies. “In the meantime, CreakyJoints has collated the most up-to-date research and educational content about family planning for people living with autoimmune arthritis in the latest edition of our patient guidelines series. The new booklet seeks to help families ask informed questions of their doctors and make well-advised decisions.”
“Raising the Voice of Patients: A Patient’s Guide for Pregnancy and Family Planning with Rheumatic Diseases,” recently published and 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, un-biased information.
ArthritisPower Research Registry Enhances Understanding of Arthritis
Recently, ArthritisPower™ successfully completed enrollment of 11,500 arthritis patients, fulfilling one of its primary contract requirements with the Patient-Centered Outcomes Research Institute (PCORI) more than 12 months ahead of schedule. Analysis of data from this patient population informs two additional posters being presented at the 2017 ACR/AHRP Annual Meeting.
The first abstract, titled, “Methotrexate Use and Fatigue in Rheumatoid Arthritis Patients: Results from a National Patient Registry (Abstract #446),” compares RA patients’ experience of symptoms based on their prescribed medications. The second abstract, “Assessing RA Disease Activity with PROMIS Measures Using Smartphone Technology (Abstract #2781),” analyzes which measures might predict results across other standards, which would allow healthcare providers to potentially ask fewer questions to understand a patient’s condition.
“With over 11,000 consented ArthritisPower participants, researchers have direct access to the arthritis community to better understand patients’ experience of disease progression, management, and treatment,” stated Dr. Nowell. “Simultaneously, ArthritisPower is empowering people living with arthritis to actively participate in their healthcare experience through shared-decision making strategies. Via our patient-led leadership committees, we also encourage ArthritisPower users to communicate with us about what questions need to be answered to better address the needs of the arthritis community.”
The full list of CreakyJoints posters and oral presentations to be presented at the 2017 ACR/AHRP Annual Meeting includes:
- Answering Reproductive Health Questions That Your Patients Want to Know: Impediments to Family Building and Risks of Contraception (Abstract #1308)
- Tough Choices: Understanding the medication decision-making process for women with inflammatory arthritis during pregnancy and lactation (Abstract #1298)
- Methotrexate Use and Fatigue in Rheumatoid Arthritis Patients: Results from a National Patient Registry (Abstract #446)
- Assessing RA Disease Activity with PROMIS Measures Using Smartphone Technology (Abstract #2781)
- Patients’ Experiences and Attitudes about Non-Medical Switching of Biologics: Results from an Online Patient Survey (Abstract #362)
- A Trial Testing Strategies to Enhance Patient Understanding of Drug Information: Experience Recruiting Subjects through an Online Patient Community (Abstract #1860)
- Linguistic Differences in Gout-Related Online Content: A Comparison of Professional Health Literature for Consumers Vs Patients’ Online Discussions of Gout (Abstract #2250)
- Preference Phenotypes Can be Used to Support Shared Decision Making at the Point-of-Care (Abstract #2780)
Created by CreakyJoints in collaboration with the University of Alabama at Birmingham, and supported by a multi-year, multi-million dollar investment by the Patient-Centered Outcomes Research Institute (PCORI), ArthritisPower is the first ever patient-led, 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 simultaneously participating in research via informed consent. ArthritisPower Patient Governors serve as gatekeepers for researchers seeking to access registry data or solicit the community to participate in unique, voluntary studies. To learn more and join ArthritisPower, visit www.ArthritisPower.org.
CreakyJoints®, now in its 18th year, is the go-to source for more than 100,000 arthritis patients and their families world-wide who are seeking education, support, advocacy and patient-centered research. Co-founded in 1999 by arthritis patient Seth Ginsberg and social entrepreneur Louis Tharp, CreakyJoints is part of the Global Healthy Living Foundation, whose mission is to improve the quality of life for people with chronic illness. For more information and to become a member (for free), visit www.CreakyJoints.org.