Exploring Patients' Knowledge and Misconceptions about Multiple Sclerosis and Pregnancy

Background: Multiple sclerosis (MS) has a high incidence in women of childbearing age, and accurate knowledge and understanding of family planning issues is crucial for best outcomes.

Objectives: To delineate which misconceptions might exist within the female MS population with regards to family planning, pregnancy, breastfeeding, MS genetics, and medication safety through a pilot study.

Methods: 37 female patients with MS aged 18 to 50 completed an anonymous questionnaire at a single MS Center in New York. We collected baseline demographic information and reproduction history, and then asked 22 questions pertaining to four main categories: the effect of pregnancy on MS, the effect of MS on pregnancy, MS medication safety during pregnancy and breastfeeding, and the effect of MS on offspring.  After completing the questionnaire, patients were given an educational answer key. 

Results: Mean age of patients was 36 years (SD+/-5.6); 86% had RRMS. Mean time since diagnosis was 6.7 years (SD +/- 5.2), and 30.5% had been pregnant since their MS diagnosis. The average correct score on the questionnaire was 32.8% overall and 40.5% in patients who had been pregnant since MS diagnosis. The four main categories of knowledge were sub-analyzed for correctness. The largest area of deficit pertained to the effect of MS on reproduction, with an average of 27.7% correct. On questions pertaining to medication safety, the average percent correct was 35.9%. Only 21.0% knew that relapses can be treated with steroids during pregnancy; 50.0% of patients who had been pregnant knew this. Only 37.8% answered correctly a question on the importance of birth control while on disease-modifying drugs (DMTs). Furthermore, of the patients on DMTs, 34.0% reported not consistently using any form of birth control.

Conclusions: There remain substantial unmet educational needs pertaining to reproductive issues in women with MS.  Our data identified misconceptions on important topics and impact on patient behavior, including low awareness of the need for birth control on DMTs and concurrently low self-report of effective use of contraception. Education on this topic could help prevent adverse fetal outcomes. Additionally, patients’ misperceptions of negative effects of MS on reproduction might disincline them from starting families.  We intend to replicate this study on a broad geographic cohort towards planning educational initiatives to address these needs.