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Women With Chronic Rheumatic Diseases Face Obstacles During Motherhood

New survey findings suggest patients delay pregnancy or interrupt their treatment to become pregnant

A PPM Brief

Biopharmaceutical company UCB (Brussels, Belgium) recently presented findings1 from a patient survey, entitled Fears and Misconceptions of Women with Chronic Rheumatic Disease Along their Journey to Motherhood, at the 2018 European Congress of Rheumatology (EULAR) in Amsterdam. The survey results, collected from 622 female participants diagnosed with chronic rheumatic diseases (eg, rheumatoid arthritis, psoriatic arthritis, and axial spondyloarthritis), suggest that women with these diseases face unique challenges during their childbearing years that may be linked to decisions to delay pregnancy and/or interrupt their existing treatment for pregnancy.

Specific survey data revealed that:

  • Fewer than half (46%) of women surveyed visited a healthcare professional prior to becoming pregnant, and, although guidelines recommend addressing family planning/pregnancy in women with chronic rheumatic diseases before conception, a majority (69%) of women had to initiate the discussions themselves.
  • While generally satisfactory, some female patients still felt they lacked information on the impact of their treatment decisions on pregnancy (38%) and breastfeeding (24%).
  • Many women chose to either delay pregnancy (54%) or discontinue their treatment before becoming pregnant (20%).
  • Almost half (46%) of women who delayed their decision to become a parent said they did so out of concern that they may pass their condition on to their child.
  • About one-third (32%) of women had inadequately controlled disease activity during pregnancy, and some (22%) even reported their disease worsening.
  • Only 65% percent of women reported having aligned a treatment plan among their different healthcare professionals.

“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 study author Rebecca Fischer-Betz, MD, Department of Rheumatology at University Hospital of Düsseldorf, Germany, in a company press release.2

The study authors suggest that these findings point to a need for greater access to reliable and consistent information for these specific patients. Study authors urge healthcare professionals 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.”

In response to the survey, UCB recently launched the Autoimmune Motherhood (AIM) Movement, a campaign designed to spread awareness about managing chronic rheumatic diseases throughout all stages of pregnancy and to encourage women to have informed conversations with their healthcare professionals. The program is to be rolled out in Europe and North America in partnership with various local advocacy patient groups.

Last updated on: July 16, 2018
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