Background/Purpose: Existing data suggest that barriers to pregnancy counselling exist and might represent an area of need in order to optimize outcomes for SLE pregnancies. Yet, this issue has not been comprehensively explored, representing an important knowledge gap. Our objectives were to assess pregnancy counselling needs in women with SLE and to identify potential clinical and psychosocial barriers and facilitators to meet their counselling needs.

Methods: Focus groups were conducted with SLE females contemplating pregnancy or trying to conceive, women with SLE who were pregnant or had recently been pregnant (≤2 years), and healthcare professionals (e.g. rheumatologists, maternal-fetal medicine specialists, obstetrician-gynecologists, nurses) until thematic saturation was achieved. Participants were recruited through purposive sampling from community-based practices, as well as peripheral and tertiary care centers from the McGill University’s health network. Only women meeting ≥4 ACR classification criteria for SLE were included. Transcripts were reviewed by 2 independent investigators using the constant comparative method to identify emerging themes and data were analyzed thematically using grounded theory.

Results: Twenty-four SLE patients and 10 healthcare professionals participated in 10 unique focus groups that lasted 60 minutes each. The following themes emerged: 1) Anxiety – Patients feared their disease would affect the health of their offspring, prevent them from breastfeeding and/or care for a newborn. They also worried over the anticipated extra stress and fatigue associated with pregnancy, and expressed concerns that the stress could cause a lupus flare. The systematic categorization of their pregnancy as “high risk” was verbalized as a source of anxiety. Information on the internet was also perceived as “extremely scary”. 2) Confusion – The consensus was that information available on SLE pregnancy was limited and not always clear, particularly on the internet where forums were seen as unreliable. Although patients saw their rheumatologist as the primary source for information, they felt that the information on pregnancy was vague until the moment they voiced that they wanted to conceive. 3) Frustration – Patients were frustrated that their concerns and anxiety were not taken seriously by members of their support system as few of them know what SLE is and what it entails during pregnancy. Having to plan a pregnancy at a time of disease quiescence was also frustrating. This can fall outside of their personal narrative or outside their cultural value system. Not remembering some of their questions or not having time to ask them all during medical encounters was a common source of frustration among patients.

Conclusion: Our qualitative study provides important insight into the needs and barriers to pregnancy counselling in SLE women. Potential strategies to address these might include facilitating access to psychosocial support (e.g. psychologist, social worker) during pregnancy, developing an educational tool, providing a checklist of questions for medical encounters, and designing prenatal classes dedicated to SLE patients and their partners.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/needs-and-barriers-to-pregnancy-counselling-in-women-with-sle/