A longitudinal study of reproductive choices in women with inflammatory bowel disease

Study code

Lead researcher
Dr Christian Selinger

Study type

Institution or company
St. James University Hospitals, Leeds

Researcher type

Speciality area

Recruitment Site


Women with inflammatory bowel disease (IBD) have fewer children than other women. 

Previous studies have suggested that while some experience infertility up to 18% chose to not have children voluntarily. Our previous research has shown that women that remain voluntarily childless may have more severe disease, are more often single, are older, have less knowledge about IBD & pregnancy and have asked health care professionals less often about IBD & pregnancy.  

The previous studies have all examined the issue by asking women at one time-point in their life but have not followed up these women over time. We are interested in examining women’s choices about having children over time as the wish to have children is likely influenced by relationship status, current disease activity, patient knowledge and attitudes. These factors are fluent over time and previous studies may therefore not have captured the whole aspect of the study topic. 

We will approach patients that have participated in the IBD BioResource study and invite them to take part in this study by answering a yearly survey. This survey will include: questions on relationship status, demographic changes over last year, IBD status and treatment, attempts to conceive, any pregnancies and subsequent pregnancy outcomes, patient knowledge and patient views.

The study follows women until either the birth of a child or for 10 years. 

Participation: For this study we recruited 288 volunteers between the ages of 18 and 30 from the IBD BioResource who completed an online survey. 

Organisation: This study is organised by Dr Christian Selinger from The Leeds Teaching Hospital. 


Publications arising: 

Planning to conceive within a year is associated with better pregnancy-specific disease-related patient knowledge and better medication adherence in women of childbearing age with inflammatory bowel disease.
Selinger, C., Laube, R., Steed, H., Brookes, M., BioResource, N., Leong, R.
Therapeutic Advances in Gastroenterology
30 August 2023

In a cohort of women of childbearing age with IBD overall medication, adherence was low. Planning to conceive within the next year was associated with better adherence and greater patient knowledge.