UCB presents findings of patient survey'Fears and Misconceptions of Women with Chronic Rheumatic Disease Along Their Journey to Motherhood" at EULAR meeting.
UCB presents findings from a patient survey entitled "Fears and Misconceptions of Women with Chronic Rheumatic Disease Along Their Journey to Motherhood" at the Annual European Congress of Rheumatology (EULAR 2018), which took place in Amsterdam, June 13-16, 2018. Findings from 622 women across Europe, the United States, and Japan with chronic rheumatic diseases, including rheumatoid arthritis (RA), psoriatic arthritis (PsA) and axial spondyloarthritis (axSpA), suggest that women with chronic rheumatic diseases face unique challenges during their childbearing years that may be linked to decisions to delay pregnancy and interrupt treatment.
Study authors suggest that these findings point to a need for greater access to reliable and consistent information. Although it is recommended that women of childbearing age consult their healthcare team regarding disease control and family planning early on in their reproductive journey, fewer than half (46%) of women surveyed visited a healthcare professional (HCP) prior to becoming pregnant, and a majority of these women (69%) had to initiate these discussions themselves. While information provided by HCPs was generally satisfactory, some patients still felt they lacked information on the impact of their treatment decisions on pregnancy (38%) and breastfeeding (24%). Many women surveyed chose to either delay their plans to become pregnant (54%), or to discontinue their treatment before becoming pregnant (20%), and in the majority of cases, women indicated it was their idea to do so (68%). Almost half (46%) of women who delayed their decision to become a mother said they did so out of concern they may pass their condition on to their child.
"Survey results suggest that for some, the decision to delay pregnancy or stop treatment may be linked to a lack of guidance and reliable information, indicating a strong need for greater disease awareness and access to trustworthy educational materials to inform discussions about treatment and family planning," said Dr. Rebecca Fischer-Betz, Department of Rheumatology, University Hospital of Dusseldorf, Duesseldorf, Germany. "Findings support the idea that it's important for patients and HCPs to work collaboratively from the start to ensure women have the information they need to make informed decisions regarding treatment and family planning, assuring optimal outcomes for both mother and child."
About a third (32%) of women reported having inadequately controlled disease activity during pregnancy, while 22% reported disease worsening. Determining a treatment plan that is suitable during family planning is a complex decision to be made in consultation with one's healthcare team, yet only 65% percent of patients reported having aligned a treatment plan between their different HCPs. To support women living with chronic rheumatic diseases as they navigate their childbearing years, UCB is launching the AIM Movement, a global campaign with local reach designed to spread awareness about managing chronic rheumatic diseases throughout all stages of reproductive journey and encourage women to have informed conversations with their healthcare professionals. The AIM campaign awareness efforts will be rolled out in Europe and North America, in partnership with various local advocacy patient groups.
About the Survey- A total of 1,052 women living with chronic inflammatory diseases were surveyed across Europe (Germany, France, UK, Italy and Spain), the United States and Japan. Results presented this week at EULAR 2018 specifically highlight the experience of women aged 18-45 living with chronic rheumatic diseases (622/1052 participants), including axial spondyloarthritis (axSpA), psoriatic arthritis (PsA), and rheumatoid arthritis (RA).