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The importance of pre-conception counselling in IBD patients

Approximately 20,000 Irish people have inflammatory bowel disease (IBD), with rising incidence rates globally. The incidence of IBD peaks between the ages of 15 and 30 years. Due to the chronic nature of IBD, the disease may impact the major milestones of a woman’s life, including menstruation, sexuality, family planning and menopause.

Patients with IBD have smaller family sizes when compared to the general population, commonly due to personal choice — also known as voluntary childlessness. This occurs despite fertility in female patients with quiescent IBD being comparable to the general population, except in those who have undergone ileal pouch-anal anastomosis. The phenomenon of voluntary childlessness among patients with IBD is likely complex but includes the fact that women with IBD tend to have incorrect beliefs and misplaced fears regarding IBD heritability, teratogenicity related to medication and risk of congenital abnormalities — a so-called ‘mismatch of perception and reality’.

Unfortunately, a lack of IBD-specific pregnancy-related knowledge among healthcare professionals (HCPs) may inadvertently fuel the fire and contribute to poor patient knowledge. This can lead to fear and anxiety in this patient group, who are already stressed about their disease. Women are commonly reluctant to discuss issues of family planning with their gastroenterologists and it is important that all HCPs take every possible opportunity to broach the topic of family planning. An ideal scenario is where gastroenterologists take on timely pre-pregnancy counselling and lead proactive care for pregnant IBD patients, rather than adopting a reactive management approach. However this is not always feasible.

Key points that all HCPs (including GPs and obstetricians) dealing with female IBD patients of reproductive age should be aware of include:

General preconception advice applies to females with IBD, ie, stop alcohol and smoking. Commence folic acid. If a patient is on sulfasalazine, one should increase the dose of folic acid. IBD patients may be more prone to iron deficiency anaemia or in certain instances vitamin B12 deficiency and this should be addressed.

Quiescent disease at time of conception is desirable; patients should be counselled to strive towards a durable, sustained remission before conception. Disease activity during pregnancy is a risk factor for adverse maternal and pregnancy outcomes. There is a high risk of ongoing active disease during pregnancy in women who have disease activity at conception.  It is recommended that patients should have objective disease evaluation before conception to optimise disease management.

It has been shown that women overestimate the harmful effect of medication and underestimate the harmful effects of IBD flares during pregnancy. Pre-conception counselling has been shown to lead to higher rates of IBD medication adherence during pregnancy. Only two agents used in the treatment of IBD should absolutely not be used in patients planning to conceive. These are thalidomide and methotrexate. Patients considering pregnancy should link in with their gastroenterologist/IBD nurse specialist regarding introduction of alternative medications and washout period of these drugs prior to discontinuation of contraception. All other medications are deemed safe in pregnancy.  It is imperative to dissuade patients from stopping any medications until options are discussed at length with their consultant gastroenterologist. This is due to the overarching importance of keeping disease in remission during pregnancy to avoid both maternal and foetal adverse outcomes.

The risk of passing IBD on to offspring ranges from 1.6 per cent to 5.2 per cent with one parent having the disease and over 35 per cent when two parents have the disease. The risk is highest for Crohn’s disease and transmission is most common from mother to daughter.

A recent study showed the highest level of IBD-specific knowledge was seen amongst obstetricians who had attended to at least 20 pregnant IBD patients in the preceding five years. This supports the need for subspecialised, high-risk obstetric clinics. It is important that GPs and obstetricians notify and refer IBD patients to a gastroenterology specialist service as soon as they are considering pregnancy or are pregnant to ensure optimal management of their disease. Gastroenterologists must be mindful of the sources of IBD-specific related information available to patients and ensure they are receiving correct advice. Specifically, an important key role for gastroenterologists is to communicate evidence-based treatment plans and advice to obstetricians and GPs involved in the care of IBD patients. 

Further reading

Van der Woude, CJ et al. The second European evidenced-based consensus on reproduction and pregnancy in inflammatory bowel disease. J Crohn’s Colitis, v9, n2, p107-24, Feb 2015.

Nguyen et al. The Toronto Consensus Statements for the Management of Inflammatory Bowel Disease in Pregnancy. Gastroenterology, 150:734-757 March 2016.

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