Immune-mediated diseases, such as rheumatoid arthritis, systemic lupus erythematosus, antiphospholipid syndrome, inflammatory bowel disease (IBD), psoriasis, and psoriatic arthritis, are frequently diagnosed during a woman’s reproductive years.

Because nearly half of all pregnancies in the general population are unplanned, experts recommend incorporating reproductive planning into routine clinical care, particularly for women whose pregnancies carry additional risks related to chronic inflammatory disease, teratogenic medications, and inadequate preconception optimization.

A Finnish national registry study also found that women living with these conditions were more likely to remain childless and experienced poorer perinatal outcomes when they became pregnant.

Expanding Guidance

The 2020 American College of Rheumatology guideline includes 131 recommendations covering contraception, pregnancy, breastfeeding, and menopause while emphasizing close collaboration between rheumatologists and obstetricians.

Similarly, the European Alliance of Associations for Rheumatology established as a core principle in 2016 recommendations that treatment decisions during pregnancy should be based on multidisciplinary consensus, with patients serving as active participants in shared decision-making.

In gastroenterology, the 2024 American Gastroenterological Association’s clinical practice update on pregnancy-related gastrointestinal and liver disease recommends multidisciplinary preconception and contraceptive counseling for all individuals of reproductive age with gastrointestinal or liver disease. Likewise, the 2025 global consensus on pregnancy in IBD recommends preconception optimization together with consideration of long-acting reversible contraception.

The available evidence now appears sufficient to support the structured implementation of these recommendations in clinical practice.

Guideline Gaps

The challenge arises when care is shared across multiple specialties, a common scenario for women with immune-mediated diseases.

A review of clinical practice guidelines found inconsistent recommendations regarding pregnancy, breastfeeding, and preconception care in 75% of comparisons within the same specialty and 87.5% of comparisons across different specialties. Agreement was lowest between gastroenterology and dermatology, particularly for pregnancy and breastfeeding recommendations.

Training also remains inadequate. In a survey of 388 rheumatologists and dermatologists, 90% reported being unfamiliar with shared decision-making models, whereas 57% lacked confidence in providing contraceptive counseling.

A review by the European Crohn’s and Colitis Organisation identified multidisciplinary teams as the preferred model for reproductive care in IBD but acknowledged that such services remain uncommon.

Care Gaps

This fragmented approach creates gaps in care at every stage of the reproductive cycle.

Regarding contraception, one survey found that 37.8% of women with autoimmune rheumatic diseases were not using any contraceptive method, and only 13.5% had discussed contraception with their specialist.

During preconception counseling, 17%-38% of individuals with IBD reported deciding not to have children, primarily because of inadequate information and fear rather than biologic infertility.

Similarly, women with psoriasis frequently reported initiating discussions about family planning themselves because access to reliable counseling was limited. In some cases, insufficient information contributed to irreversible reproductive decisions, including choosing not to have children.

The breastfeeding period represents another important gap in care. Although most biologic therapies are considered compatible with breastfeeding, treatment is often discontinued unnecessarily by clinicians or patients.

During menopause, evidence suggests that hormone replacement therapy may be offered to women with lupus who do not have antiphospholipid antibodies. However, this treatment option remains largely underrecognized.

Lifelong Care

During development of the American College of Rheumatology guideline, patients consistently emphasized that discussions about reproductive health should occur “early and often,” well before pregnancy becomes an immediate consideration.

Current evidence supports this approach. The remaining challenge is not a lack of clinical guidance but ensuring that specialists incorporate reproductive counseling and shared decision-making throughout the reproductive life course, from contraception and pregnancy planning to breastfeeding and menopause.

The authors’ conflicts of interest are reported in the original study publications.

This story was translated from Univadis Spain, part of the Medscape Professional Network.