Abstract
OBJECTIVE: Women 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. METHODS: We 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. RESULTS: Women 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. CONCLUSION: Our 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.