This study assessed the information needs of women with chronic autoimmune inflammatory conditions across the pregnancy continuum.
We conducted a web-based survey with women about information needs related to family planning. Eligible participants were female, aged 18-44, had a diagnosis of a chronic inflammatory condition, and were at one of three pregnancy stages (planning, currently pregnant, or postpartum).
The survey yielded 209 responses. Respondents had high levels of information needs and were active information seekers. Many respondents reported difficulty finding the information they need. Over half (56.9%) reported receiving conflicting information from different doctors, and a majority of those respondents reported doing their own research. Respondents expressed the greatest interest in resources that facilitated connections to other women and their experiences (87.4%). Pregnancy stage was significantly associated with information needs and preferences; respondents in the planning stage of pregnancy had higher information needs, reported more dissatisfaction with communication with doctors, and were less connected to pregnancy resources.
Both providers and health/advocacy organizations have a role in improving information around this topic, such as developing and disseminating resources tailored to pregnancy status and supporting patient-centered communication around family planning.