Mehret Birru Talabi
Fear and anxiety related to their disease, in addition to infertility, may impact family sizes of women with inflammatory arthritis, according to data published in ACR Open Rheumatology.
“This study was important because it involved women, many of whom are still in their reproductive years, and explored their reproductive experiences,” Mehret Birru Talabi, MD, PhD, of the University of Pittsburgh, told Healio Rheumatology. “It was really surprising to me how many women felt they were going to die young because of their inflammatory arthritis. Most of these women will not die early from inflammatory arthritis, which shows a fundamental disconnect between patients' perceptions and what epidemiologic data tell us. Some of our patients are really afraid. Some of their decisions are reflecting that fear.”
To evaluate the barriers and facilitators that impact family size among women with inflammatory arthritis, as well as their experiences and how they make family planning decisions, Talabi and colleagues formed a research partnership between Duke University and CreakyJoints. Together, the researchers developed an ArthritisPower-based, cross-sectional online survey. The 183 questions — mostly multiple choice, with some short-answer responses — assessed participants’ experiences with pregnancy, miscarriage or infertility, as well as medication use before and during pregnancy, contraception and menstruation.
Disease-related anxiety, in addition to infertility, may impact family sizes of women with inflammatory arthritis, according to data.
The survey also gauged participants’ engagement with primary care physicians and subspecialists, main sources of reproductive health information, and how they feel regarding various myths related to inflammatory arthritis and pregnancy, childbearing and DMARD use. A total of 267 eligible participants — all women aged 18 to 50 years — completed the survey. Of those, 79% had rheumatoid arthritis, 14% had juvenile idiopathic arthritis, 11% had psoriatic arthritis, 9% had ankylosing spondylitis and 6.4% were diagnosed with arthritis associated with inflammatory bowel disease.
According to the researchers, 27% of participants reported pregnancies following a diagnosis of inflammatory arthritis, with a range of one to five pregnancies post-diagnosis. As many as 58% said they chose to limit their family size because of their arthritis, citing fears that their child could inherit their arthritis, that their diseases and medications could directly harm a fetus, that they would be incapable of physically caring for a child, or that arthritis could cause premature death. Infertility impacted 40% of participants.
In addition, half of the participants reported subjective arthritis flares around the time of menstruation. Oral contraceptive pills did not worsen disease activity for most women. For a subset of participants, oral contraceptives prevented menstrual-associated arthritis flares.
“This underscores the need for better education for our patients,” Talabi said. “Our study was also novel because we discuss menstruation and oral contraceptives. These topics were of considerable interest to our patient stakeholders, and therefore, I think will be relevant to discuss with other female patients with inflammatory arthritis. We found that women have increased perceived disease activity shortly before or during the first few days of menstruation. It is unclear whether this reflects objective disease flares.”
“However, we think it's worthwhile to think about menstruation as a reason why some women may experience cyclical disease flares,” she added. “Rheumatologists may wish to ask about menstrual phases when assessing the disease activity of young women with inflammatory arthritis.” – by Jason Laday
Disclosures : Nowell reports owning stock in AbbVie, Alexion, Allergan, Biogen, Bristol-Myers Squibb, Eli Lilly, GlaxoSmithKline, Janssen, Merck, Novartis, Pfizer and UCB. Clowse reports consulting fees from UCB. Please see the full study for additional authors’ disclosures.