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Abstract Details

A Survey Study of Pregnancy-Related Issues in Multiple Sclerosis Patients: the Patient’s Voice.
Multiple Sclerosis
P4 - Poster Session 4 (5:30 PM-6:30 PM)
15-091

The objective of this study was to collect patient-experience data around family planning, pregnancy, and breastfeeding post-diagnosis. Further, we aimed to characterize the degree that physicians (neurologists and obstetricians) provided guidance in these complex decisions and personal choices.  

Multiple sclerosis (MS) typically presents in women between ages 20-40, during their prime fertile years. In the past decade, there have been significant advances in therapeutic options. However, little remains known about the application of these therapies in the setting of pregnancy and breastfeeding. Currently, the FDA is eliminating letter scores (A-D, X) to support personalized decision-making.  
1000 surveys were sent to female patients (ages 18-65) with an MS diagnosis (ICD-9) who had ≥ 1 clinic visit. Data was analyzed using SPSS.
174 respondents with 70% receiving MS-specialty care. 137 without pregnancy following MS diagnosis. Of these, 22 indicated decision driven by MS-related concerns: MS worsening with pregnancy (63.6%); ability to care for child secondary to MS (45.5%); lack of knowledge about options for pregnancy and MS (18.2%); passing MS onto child (18.2%); stopping DMT to attempt pregnancy (9.1%). Among the 36 woman who had a pregnancy following diagnosis, 20% reported postpartum depression/anxiety, higher than the national average of 10-15%. The majority reported receiving inconsistent advice regarding when to discontinue DMT before attempting pregnancy (0-6 months). Breastfeeding was reported in 71% of mothers post-diagnosis with a range of durations (0.25-10 months), partially driven by variable guidelines regarding DMT re-initiation.
MS patients receive a wide variety of guidance and engagement from their healthcare providers regarding family planning and pregnancy-related decisions. We believe that the variability seen in our small population reflects the larger experience of women around treatment and motherhood. We hope to highlight the difficulty our patients face and begin an MS-community discussion around these issues to improve the individual patient experience.
Authors/Disclosures
Casey Engel
PRESENTER
Casey Engel has nothing to disclose.
Myla D. Goldman, MD, MSc, FAAN (Virginia Commonwealth University) Dr. Goldman has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Genentec. Dr. Goldman has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Immunic. Dr. Goldman has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Novartis Pharmceuticals. Dr. Goldman has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Kiniska. Dr. Goldman has received personal compensation in the range of $500-$4,999 for serving as a Consultant for TG Therapeutics. Dr. Goldman has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Brainstorm Cell Therapeutics Ltd., . Dr. Goldman has received personal compensation in the range of $500-$4,999 for serving as a Study Section Member with NIH. Dr. Goldman has received personal compensation in the range of $0-$499 for serving as a Grant Review Committee Member with Department of Defense.