OBJECTIVE: This study assessed the information needs of women with chronic autoimmune inflammatory conditions across the pregnancy continuum.
METHODS: 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).
RESULTS: 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.
PRACTICE IMPLICATIONS: 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.