Pregnancy, Periods, and “The Pill”: Exploring the Reproductive Experiences of Women with Inflammatory Arthritis

Abstract

ObjectiveWomen with inflammatory arthritis appear to have fewer children as compared with healthy women, but few studies have assessed how patients' attitudes and decision making influence their family sizes. Little is also known about how patients experience other aspects of their reproductive lives, such as menstruation and contraception.MethodsWe partnered with ArthritisPower, a patient‐powered research network, and its associated online patient community, CreakyJoints, to create and disseminate a survey among female members aged 18‐50 years with inflammatory arthritis.ResultsWomen in the final sample (n = 267) were 40 years old on average; most had rheumatoid arthritis (79%) and were predominantly white and college educated. Many women chose to limit childbearing because of their arthritis (58%); they feared that their arthritis was heritable, their diseases and medications could directly harm a fetus, they would be incapable of physically caring for a child, and arthritis could cause premature death, preventing them from raising their children. Infertility affected 40% of the sample. Half of women experienced subjective arthritis flares around the time of menstruation. Oral contraceptive pills (OCPs) did not worsen disease activity for most women and even prevented menstrual‐associated arthritis flares for a subset of women.ConclusionOur findings suggest that infertility, but also potentially outsized fear and anxiety related to their diagnoses, may affect the family sizes of women with inflammatory arthritis. The observation that menstruation worsens disease activity for some women requires additional study, and OCP use should be explored as a possible treatment for menstrual‐associated arthritis. Clinicians may wish to consider how they communicate patients' individual pregnancy‐associated risks, reassure patients when appropriate, and help to guide and support patients to make well‐informed reproductive decisions.

Reproductive health needs of adolescent and young adult women with pediatric rheumatic diseases

“…Our findings mirror published literature reporting a dearth of reproductive health information available to rheumatology patients of child-bearing age [5,6,18], and young adults with other chronic diseases [19]. In other studies, women reported making key decisions about reproductive health based on misinformation, anxiety, and fear versus medical input and reliable resources [6,7]. Similarly, our participants, who had a broad spectrum of diagnoses and medications used, voiced that they had insufficient information to make informed decisions about future pregnancy and family planning, and did not know where or from whom to obtain the most accurate advice.…”

“…In spite of the unmet facet of clinical care reported almost two decades ago [ 16 ], AYAs and their parents continue to report dissatisfaction as to how reproductive health is addressed in pediatric rheumatology clinics [ 17 ]. Our findings mirror published literature reporting a dearth of reproductive health information available to rheumatology patients of child-bearing age [ 5 , 6 , 18 ], and young adults with other chronic diseases [ 19 ]. In other studies, women reported making key decisions about reproductive health based on misinformation, anxiety, and fear versus medical input and reliable resources [ 6 , 7 ].…”

“…The rheumatology community has recently emphasized the reproductive health concerns of women they care for [ 1 , 2 ], as they are at increased risk for negative pregnancy-related outcomes including pre-eclampsia, prolonged hospitalizations, and maternal and fetal mortality and morbidity [ 3 – 5 ]. Adult women with rheumatic diseases worry about fertility, chances offspring will be affected by their rheumatic disease, and the challenges of pregnancy and motherhood [ 6 , 7 ]. Little is known about how rheumatology providers address reproductive health issues with their patients, especially among adolescent and young adults (AYAs).…”

Tough Choices: Exploring Medication Decision‐Making During Pregnancy and Lactation Among Women With Inflammatory Arthritis

“…The current study focused on responses related to women's decision-making and information-seeking regarding arthritis medication use during pregnancy and lactation. Additional details about our survey have been previously described (18). This study was approved by the Duke University Institutional Review Board (PRO00079454).…”

“The medications are the decision-makers…” Making reproductive and medication use decisions among female patients with rheumatoid arthritis: a constructivist Grounded Theory

“…due to disease-related physical and functional limitations), uncertainty around medication use (e.g. stopping medications, adverse pregnancy and fetal outcomes), and fears about RA hereditability (15)(16)(17)(18)(19)(20)(21). Despite recognition that females with RA are not meeting their reproductive goals, there are no studies examining the process of reproductive decision-making, speci cally the trade-offs related to managing disease activity and potential pregnancy.…”