Pregnancy in intellectual disability: a register study to enable development of support for well-being in pregnancy through identification of risk factors and undesired outcomes

The number of women with intellectual disability (ID) who are becoming mothers is increasing. These women may differ from other women in their pregnancies. Partly with respect to external factors that may affect the health of the mother and fetus during pregnancy, such as smoking habits and socioeconomic status. But also regarding their understanding of what is going on with their bodies, and their ability to communicate with prenatal health care personnel. To ensure well-being throughout the pregnancy, it is important that routines and health care plans adapted to the special needs of women with ID are available. In order to achieve this, the risk factors and undesired pregnancy-related outcomes in women with ID need to be identified.
By using national registers, we will identify women with a diagnosis of ID (the National Patient Register), who have received service and support for people with ID (the LSS register), and women who have graduated from secondary upper school for pupils with ID (HURPID). We will collect data on pregnancies for these women from the Medical Birth Register. The years of these pregnancies will define the study period, and all children born to these women during this period will comprise the ID cohort. We will use the Multi-Generation Register to identify sisters to the women with ID. All infants born to them, as identified by the Medical Birth Register, will comprise the sister cohort. Finally, all other children born during the study period will comprise the gPop (general population) cohort.
Using outcome data from the Medical Birth Register, we aim to investigate if women with ID differ from their sisters and women from the general population with respect to contraceptive use, pregnancy risk profiles, antenatal care utilization, pregnancy complications, and mode of delivery. Moreover, for the women with at least one ID diagnosis, we will be able to assess these outcomes with respect to severity of ID and presence of behavior impairment.