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

Summary

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. 

Study Update from Dr Christian Selinger (June 2025):

"Why the study was carried out?
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.

How long has this research taken?
The study took 3 years to complete and was stopped early as fewer patients were still available to send in questionnaires.

What samples were collected, or data requested?
We sent questionnaires to women of childbearing age.

What did you find out?
We found out that family planning was down to 3 factors. The general background of the patient mattered including age, household income, and perceived support to raise a child. In addition the patient’s relationship status was important (sexual orientation, being single, not living with someone, perception of being 'in the right relationship to raise a child', perception of a good sex life). Finally stating that having a child is a goal in life mattered.

Using statistical tests we found out that voluntary childlessness was driven by having a low household income of, not seeing a child as a life goal and identifying as lesbian or bisexual.

We also examined whether family planning and knowledge about IBD and pregnancy influences how regularly patients take their IBD medication (adherence). Patients planning pregnancy for the next year were more often taken their medicines. Pregnancy-related patient knowledge was seen in those with better adherence.

How will this contribute to treating, or finding a cure for disease?
Clinicians should consider sexual orientation, income, younger age, current relationship and lack of expression of having a child as a life goal as important factors for family planning when providing care. Pre-pregnancy advice should be made widely available for women with IBD. Clinicians should be ware that planning to conceive within the next year was associated with better adherence and greater patient knowledge.

What will happen next?
We will inform patients and clinicians of our findings."