- Top of page
- MATERIALS AND METHODS
Background: Smaller family size and voluntary childlessness has been reported in IBD; however, the disease-related reasons for this from a patient viewpoint are not described. The aims were to 1) determine whether IBD patients' perceptions of the issues surrounding IBD, pregnancy, and childbearing influence their reproductive behavior, and 2) describe these specific perceptions and concerns related to fertility and pregnancy.
Methods: All contactable subjects between 18–50 years of age from a hospital-based IBD database were surveyed by postal questionnaire. Data were obtained regarding age, gender, IBD diagnosis and treatment, body image and sexual relationships, as well as both objective and subjective data regarding fertility and pregnancy. Comparisons were made to community norms where data were available. Contingency tables with Fisher's exact test were used.
Results: Of 365 subjects, 255 responded (70%). The mean age was 35.5 years overall, 34.7 years for women. In all, 34% of participants were male, 127 had Crohn's disease (CD), 85 ulcerative colitis (UC), and 5 indeterminate colitis (IC). The average fertility rate was no different between women with CD and UC (1.0 and 1.2 births/woman, respectively; P = 0.553), compared with 1.81 for all Australian women. Although 42.7% of IBD patients reported a fear of infertility, patients only sought medical fertility advice at the same rate as the general population. Fear of infertility was most evident in women, those with CD, and those reporting previous surgery. Specific patient concerns, which appear to have decreased patients' family size, included IBD heritability, the risk of congenital abnormalities, and medication teratogenicity.
Conclusions: The unusually high response rate indicates the centrality of reproductive issues to IBD patients. “Voluntary” childlessness in this group appears to result from concerns about adverse reproductive outcomes that may not be justified. Patients require accurate counseling addressing fertility and pregnancy outcomes in IBD to assist in their decision making.
Inflammatory bowel disease (IBD) commonly affects patients during their reproductive years, making the interaction between fertility, pregnancy, and IBD an important issue for both genders. Despite the postulated interaction between a diagnosis of IBD and family planning decisions, there is a paucity of data in this area, particularly from the patients' perspective. The published literature predominantly addresses pregnancy outcomes or is limited to population-based estimates of fertility and congenital abnormalities.1
Studies in male and female IBD patients have not demonstrated great differences in fertility (the capacity to conceive or induce conception) when compared with the general population,2–5 with the exception of notable subgroups. Active bowel inflammation appears to have a small detrimental effect on male6 and female fertility,7 as do some surgical procedures such as rectal excision and pouch formation, although the literature is conflicting.8, 9 Previous data suggest that high disease activity at conception increases infant risk of prematurity and low birth weight4, 10; this may be minimized by planning conception during IBD remission.
IBD medications have not been shown to affect fertility in women11 but reversible male infertility with sulfasalazine7, 12–14 and methotrexate15 is documented. These agents are easily avoided in modern IBD management, and should not necessarily influence reproductive opportunities.
To date, studies on reproductive decisions and family size have been observational16 and thus do not inform us of patient perceptions or intentions with regard to the interaction between IBD and family planning.
“Voluntary childlessness” has been described in IBD.17 However, whether this was due to IBD itself or to particular characteristics of the cohort (predominantly Caucasian, higher educational achievement) is uncertain. Despite this report, and Mayberry et al's observation about male IBD patients' family size, specific IBD-related reasons for having fewer children have not been specifically explored from a patient perspective. Given the fact that fertility appears to be reduced in only a small subset of IBD patients, it may be that “voluntary childlessness” is the main cause of the reduced fertility rate (number of live births per woman) reported in the IBD literature. We therefore sought to examine individual patient's perceptions of the interaction between their diagnosis of IBD and fertility and pregnancy issues, and how these perceptions affected their behavior with regard to reproductive choices.
The specific aims of this study were to 1) understand whether, and to what extent, IBD patients' perceptions of risk influence their reproductive behavior, and 2) describe IBD patients' specific concerns related to fertility and pregnancy.
- Top of page
- MATERIALS AND METHODS
This is the first large study to examine this important issue from a patient-centered perspective. Moreover, the high response rate (70%) not only strengthens our data, but also indicates the centrality of these concerns to our patients.
Despite little evidence for decreased fertility (ability to conceive) in the IBD literature,5 our respondents have a lower observed or actual fertility rate (fewer children) than the non-IBD population.20 Our IBD patients demonstrated a much higher rate of concern regarding infertility than the Australian female population (>40% versus 9%22). Interestingly, despite lower observed rates of fertility, medical fertility advice was only sought with similar frequency between IBD and non-IBD women,21 suggesting this reduction in fertility may be at least in part “voluntary.” This fear of infertility was most evident in those diagnosed with CD, females, and those reporting previous surgery. Of interest, while Mahadevan et al24 reported an increase in adverse conception outcomes in IBD patients with previous surgery compared with non-IBD patients (odds ratio [OR] 2.26 (1.12-4.55)), there was no difference in conception outcome between operated and nonoperated IBD subjects. While there are other data supporting adverse effects of any IBD surgery on fertility, the rate of fear affecting decision-making in our surgical patient population appeared disproportionately high.
These findings offer new and more generalizable insights into reproductive decision-making in patients with IBD due to the very high response rate to our questionnaire (70% compared with ≈20% in previous similar studies.17 Additionally, our questionnaire's subjective, open-ended nature, which allowed patients to report their own responses without categorical limitation, has added a greater depth of understanding in this area. Although “voluntary childlessness” in IBD patients has been previously reported,17 it was attributed to non-IBD (demographic) factors. Our data offer an open exploration of the IBD-related concerns patients feel negatively influence or constrain their reproductive choices.
Interestingly, IBD-related reproductive risk appeared to be overestimated by our respondents, and this misperception seemingly altered their subsequent reproductive behavior. To address respondents' specific concerns, the current literature suggests no overall fertility reduction and only a slight increase in the risk of adverse pregnancy outcomes in most IBD subgroups.7 As physicians, we need to more accurately communicate this message to our patients.
A recent population-based meta-analysis suggests a 1.87-fold increase in prematurity in all IBD patients, a 2-fold increase in low birth weight (LBW), and a 1.5-fold increased risk of cesarean section in CD patients.1 Importantly, however, population-based, case-control studies suggest no increase in more serious adverse outcomes including still birth, neonatal death, and spontaneous abortion.25, 26 While most published data do not associate IBD with a risk of congenital abnormalities,27, 28 2 studies suggested a slight increase in congenital abnormalities in patients with UC but not CD29, 30; however, this risk, if present, is very low, and certainly not of a magnitude to justify a medical recommendation to avoid reproducing.
Although long-term safety data are not yet available for the biologic agents, accumulating evidence suggests a moderately favorable safety profile for most IBD medications.7 Pooled analysis suggests no significant increase in the risk of still births, ectopic pregnancies, spontaneous abortions, or LBW infants for 5-ASA agents, corticosteroids, azathioprine, anti-TNF agents, and cyclosporine.31 A small increase in congenital abnormalities was noted for 5-ASA, anti-TNF agents and azathioprine,31 as well as a slightly increased risk of cleft palate with the use of systemic steroids in pregnancy. Most antibiotics are considered safe for brief periods in pregnancy, except for tetracycline, ciprofloxacin, and sulfonamides. Breast feeding should be encouraged in most IBD patients,7 with exceptions for patients on thiopurines, methotrexate, and cyclosporine.32
Regarding patients' fear of IBD inheritance, current data suggest that IBD does have a partial genetic component, with disease concordance higher in monozygotic than dizygotic twins.33 One parent with IBD confers a 2–13-fold higher risk of disease compared with the general population.34, 35 Looking at this from the converse, it should be emphasized that the risk of a child not having IBD is always far greater than the risk of a child developing IBD (>91% for 1 affected parent and >60% even if 2 parents are affected). It is important to emphasize to patients that a family history is neither necessary nor sufficient to predict IBD in their offspring, the absolute risk of UC and CD remaining low, at 1.6% and 5.2%, respectively, being slightly higher in Jewish populations.17
Somewhat disappointingly, several subjects attributed their negative reproductive decisions to medical advice. Unfortunately, 1 male patient reported unawareness of sulfasalazine-induced infertility while trying to conceive for 15 years. A surprising number of other subjects reported receiving generic medical advice indicating that IBD or IBD surgery rendered them infertile. The proportion of patients receiving such advice far exceeded the expected proportion of medically infertile patients in our sample. This tendency has been noted previously, in 1986, when more than 50% of IBD patients were counseled against having children by their physicians, and a similar proportion reported advice to terminate pregnancies for IBD-related reasons.36 More recent data published in 2007 suggest that 68% of IBD patients discuss reproductive issues with their IBD physician at some stage,17 providing an ideal opportunity for accurate education and correction of misperceptions.
Despite the fact that our study subjects were known to a tertiary hospital IBD Service, with access to specialist gastroenterology care and a full-time IBD nurse, the level of misinformation was high. Patients whose IBD care is entirely community-based may have even lower levels of IBD knowledge, and thus an even higher rate of misperception regarding their reproductive risk. Physicians should instigate discussion about reproductive issues as part of routine IBD care in the under-50s, especially when treating women, those with CD, and those with previous IBD surgery.
The enthusiasm shown by IBD patients in returning the questionnaire highlights the importance of reproductive issues in this group, and the pressing need to incorporate realistic discussion and education into the IBD consultation. Patients should be encouraged to seek reproductive advice to address fears, and physicians should liaise with obstetric colleagues to provide individualized and specific counseling regarding fertility and pregnancy planning.