Background/Purpose:

Women with arthritis wonder whether they will be able to have the children they desire. They also worry that oral contraceptives may worsen their arthritis. Working with the Patient Governors of an inflammatory arthritis network, we developed a reproductive survey to answer these questions.

Methods:

The survey was developed in a collaboration between the research and patient teams. The survey was distributed via email to the network’s participant list and consent was implied the women clicked on the link to join the anonymous survey. This study is limited by selection and recall bias.

Results:

From March to June 2017 14,711 invitations were sent with 250 female responses. Self-reported diagnoses of RA (80%) and SpA (24%) were hampered by many women reporting multiple diagnoses. The majority of respondents were white (83%), non-Hispanic (82%), with a college degree (69%).

Of all women, 59% had fewer children than they desired due to arthritis and 36% had the full number they wanted. Women who had fewer children had an earlier age of diagnosis compared to those did not (24.5yrs vs 31.6yrs, p<0.0001). The most common fears limiting family size were 1.) being unable to care for a child (85%), 2.) arthritis medications would harm child (61%), and 3.) the child would get arthritis (52%).

Of the women who tried to conceive after their arthritis diagnosis, 44% reported infertility (23% with physician-diagnosed infertility and 42% taking >1yr to conceive). Unexplained infertility (39%) was the most common cause, followed by ovulation dysfunction (37%), endometriosis (26%), and uterine/tubal issues (26%). Women with physician-diagnosed infertility were younger at arthritis diagnosis than fertile women (24.6yrs vs 31.4yrs, p=0.007). Half of the women with infertility used multiple forms of assisted reproductive technology, including oral (27) and injectable (16) medications and IVF (7).

Of the women not pregnant, trying to become pregnant, or in a same-sex relationship, 35% reported currently using highly effective, 32% effective, and 33% ineffective contraception; 28% of women taking methotrexate were using ineffective contraception.

Of the 135 of women who report ever using OCP, 70% report no impact of the pills on their arthritis; 9% had improved arthritis and 10% had worsened arthritis. At the time of the survey, 20% of women were currently taking OCPs: more prior OCP users noted worsening of arthritis with the drugs than current OCP users (16% prior vs 2% current users, p=0.02)

Half of women noticed an effect of their menstrual cycle on their arthritis disease activity with the vast majority reporting worsening just prior to (60%) or during menstruation (36%). Multiple women reported that taking OCPs continuously, and thus avoiding their monthly menses, seemed to decrease their pre-menstrual flares.

Conclusion:

More than half of the women report having fewer children than they had ideally wanted, largely due to infertility and concerns about their medications and difficulty mothering. The frequency of ineffective contraceptive use among women on methotrexate remains unacceptably high. Fear of OCPs appears to be unfounded and continuous OCP use may provide relief for women with menses-related arthritis flares.

ACR Meeting Abstracts - https://acrabstracts.org/abstract/answering-reproductive-health-questions-that-your-patients-want-to-know-impediments-to-family-building-and-risks-of-contraception/