For women living with chronic inflammatory diseases, the path to motherhood is often paved with uncertainty and unanswered questions.
Imagine being a young woman with a chronic inflammatory disease like rheumatoid arthritis or psoriasis, contemplating starting a family. You're caught between the fear of your disease affecting your baby and the terror that going off medication could cause a debilitating flare-up. This is the daily reality for millions of women worldwide—and far too often, they navigate this complex journey without the crucial guidance they need from their specialists. Recent research reveals a troubling communication gap in healthcare that leaves women poorly informed about critical decisions surrounding pregnancy, treatment, and family planning 1 .
Chronic inflammatory diseases (CIDs) include conditions like rheumatoid arthritis, psoriatic arthritis, axial spondyloarthritis, psoriasis, and systemic lupus erythematosus. These conditions involve the immune system mistakenly attacking the body's own tissues, causing inflammation, pain, and potential long-term damage to joints and organs.
What makes this particularly significant is that these diseases often strike during peak reproductive years—between the late teens and late 30s—creating a complex intersection between disease management and family planning decisions.
These conditions predominantly affect women during their childbearing years, creating unique challenges for family planning.
Managing medications while considering pregnancy requires careful coordination between specialists.
Shared decision-making (SDM) represents a collaborative process where patients and clinicians work together to make healthcare choices that align with medical evidence and the patient's values, preferences, and life circumstances. In the context of CIDs and reproduction, this might involve discussions about:
The end goal is for both physician and patient to share responsibility for selected treatment and management options based on both clinical expertise and patient priorities.
A major mixed-methods needs assessment conducted in 2021 set out to systematically identify the challenges and barriers dermatologists and rheumatologists experience when engaging women of reproductive age in shared decision-making. The study aimed to move beyond assumptions and gather concrete evidence about what was happening—or not happening—in clinical conversations 1 .
The research employed a rigorous two-phase approach to capture both depth and breadth of insights:
Researchers conducted 48 in-depth, semi-structured interviews with dermatologists and rheumatologists from Germany, the UK, and the USA. These conversations explored the meaning, context, and underlying reasons behind the challenges clinicians faced in their practice 2 .
All participants were actively practicing specialists with at least three years of experience, a minimum 5% caseload of female patients of reproductive age with CIDs, and experience prescribing biologics—ensuring they regularly encountered the clinical situations being studied 2 .
| Specialty | Interviews Completed | Surveys Completed | Countries |
|---|---|---|---|
| Dermatologists | 24 | 167 | Germany, UK, USA |
| Rheumatologists | 24 | 173 | Germany, UK, USA |
| Total | 48 | 340 | 3 |
The findings revealed significant gaps between the ideal of shared decision-making and the reality of clinical practice:
| Barrier Category | Specific Challenge | Percentage Affected |
|---|---|---|
| Knowledge Gaps | Unfamiliar with SDM models | 90% |
| Misconceptions about medication safety during pregnancy | 48-57% | |
| Skill Gaps | Difficulty discussing contraceptive methods | 57% |
| Challenges adjusting treatment based on pregnancy plans | 41% | |
| Attitudinal Barriers | Preference to defer to OB/GYN | 44% |
| Comfort level discussing sensitive topics | Varies by gender |
The communication gaps identified in this research have tangible consequences for women living with chronic inflammatory diseases:
Previous surveys of women with CIDs have revealed that 69% had to initiate conversations about pregnancy themselves, rather than having their specialists bring up the topic. Just 34-56% of women felt they had all the information they needed to make informed decisions about pregnancy and their health condition 9 .
Many women report delaying pregnancy due to unfounded fears about passing health issues to their children or not being physically well enough to carry a child, often because they haven't received accurate information from their healthcare team 9 .
When rheumatologists and dermatologists avoid reproductive health discussions, it creates a domino effect:
May occur without appropriate preconception planning, leading to complex medical decisions.
Happen abruptly when women stop medications upon discovering pregnancy.
Can result from sudden medication changes, worsening health outcomes.
Of adverse pregnancy outcomes from active disease during gestation.
The research found that unplanned pregnancies were commonly reported as a barrier to prescribing biologics, yet most specialists lacked the skills to effectively discuss contraception that could prevent these situations 8 .
The same research that identified these challenges also points toward solutions. The study authors recommend blended-learning interventions to assist chronic inflammatory disease specialists in developing effective communication and patient engagement competencies 1 .
Like the PLISSIT model, which provides a scalable approach for initiating and tailoring reproductive health conversations 4 .
The "Inform and Acknowledge" approach offers a rhythm for maintaining discussions over time 4 .
Focusing on reproductive health topics specific to chronic inflammatory diseases.
And decision aids to support both clinicians and patients in navigating treatment decisions.
The research also highlights the importance of building confidence among specialists—particularly in approaching conversations in ways that make patients feel comfortable discussing sensitive health concerns. The study found gender differences in this area, with a greater proportion of male rheumatologists reporting suboptimal skills in this area compared to female colleagues (52% vs. 30%) 8 .
The path toward better care for women with chronic inflammatory diseases begins with acknowledging the communication gaps that currently exist. The compelling research into barriers facing both patients and clinicians reveals an urgent need for improved education, tools, and frameworks to support these crucial conversations.
"Collaboration among the health care team is critical to delivering high-quality care, and while it can be logistically difficult to come to a consensus, coordination on our efforts can really make the difference in the experience of the patient" 9 .
The silence surrounding reproductive health in chronic inflammatory disease care is beginning to break. With continued research, improved clinician education, and patient empowerment, the future holds promise for women to make truly informed decisions that align both their family planning hopes and their health needs.
The journey toward motherhood should be guided by knowledge, not limited by silence.