Contraception decision-making and care among reproductive-aged women with autoimmune diseases

In this qualitative study, we sought to understand better the contraception-related experiences and decision-making of women with autoimmune diseases, a group at high risk for adverse pregnancy and perinatal outcomes.

We conducted semi-structured telephone interviews with women ages 18 to 45 who had at least one autoimmune disease diagnosis. Our team recruited from outpatient rheumatology clinics in Pittsburgh, Pennsylvania. We analyzed our data for content and themes, using inductive and deductive techniques and the constant comparison approach.

The 30 women in the sample ranged from 25 to 44 years old; most were white (73%), married (52%), and had at least one child (53%). Four themes emerged from our interviews: (1) Women's decisions to use contraception were strongly influenced by their diseases and perceptions of their health; (2) Women felt that hormonal contraception was unsafe in the context of their diseases, even women without clear disease-related health risks; (3) Health care providers influenced women's consideration and selection of contraceptive methods; (4) Women rarely expected that their rheumatologists would prescribe their contraception, yet their contraception prescribers lacked knowledge about their disease-specific health risks.

Women perceived that hormonal contraception is unsafe in the context of their autoimmune diseases and cited medication fatigue and safety concerns as reasons why they did not use contraception. Some women did not appear to receive patient-centered contraception counseling from providers. Our interviews reveal areas for improving contraception care, including augmenting shared decision-making and educating patients and providers about contraception safety.

Our findings highlight potential tensions between patients' preferences for contraception, safety considerations, and ethical and medically responsible contraception care by health care providers in the rheumatology context. Future work is needed to develop person-centered, medically-appropriate models for contraception care that meet the needs of medically vulnerable populations.