By Spondylitis Association of America
Tuesday, July 31, 2018
Chronic rheumatic diseases can be potentially debilitating conditions with a high risk of lifelong complications. However, women of childbearing age experience further challenges as these diseases introduce a unique situation where a lack of consistent information and proper counseling can interfere with the woman’s ability to plan a safe and healthy pregnancy. To further understand the extent of these challenges, and the impact they have on the lives of women, 622 women between the ages of 18 and 45, living with Chronic Rheumatic Diseases (including axial spondyloarthritis, psoriatic arthritis, and rheumatoid arthritis) were surveyed across Europe, the US, and Japan. The study was called, "Fears and Misconceptions of Women with Chronic Rheumatic Diseases Along Their Journey to Motherhood", and its findings were presented at the European League Against Rheumatism (EULAR) annual conference, taking place June 13-16, 2018.
The study found that, despite the importance of consulting a healthcare professional (HCP) prior to becoming pregnant, only 46% of the surveyed women living with a rheumatic disease did so. Though most found their visits largely informative and satisfactory, some women felt that the information they received regarding treatment decisions (38%) and breastfeeding (24%) was insufficient. Most women reported having to initiate family planning discussions.
54% of the women surveyed reported delaying pregnancy, with 46% of those delaying the decision doing so out of concern for passing on health issues to their child.
20% had chosen to discontinue treatment before becoming pregnant, with 46% reporting that they did so out of concern for the child’s safety.
During pregnancy, 32% of women stated that their disease activity was not well controlled, while 22% experienced a worsening of their disease. 51%, however, experienced disease improvement.
After pregnancy, 66% of the women surveyed said they felt they had to choose between their medications and breastfeeding.
These findings suggest that a lack of reliable and consistent information may be linked to women’s decisions to delay pregnancy, and interrupt treatment. They also emphasize the need for increased disease awareness, discussions with physicians on family planning and treatment options, as well as improved access to educational materials.
Below are links to helpful resources and additional information for women with a rheumatic disease who are pregnant, or considering becoming pregnant.
Sources Used and Further Reading
“Fears and Misconceptions of Women with Chronic Rheumatic Diseases on Their Journey to Motherhood.” (Original study poster presented at EULAR, 2018.)
Press Release: “New Study Presented at the Annual European Congress of Rheumatology (EULAR 2018) Reveals Insights About Women with Chronic Rheumatic Diseases During Their Pregnancy Journey.”
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