Insufficient awareness of the disease and reproductive health issues in persons with multiple sclerosis.

Abstract

Objective: Multiple sclerosis (MS) is a chronic immune-mediated demyelinating disease of the central nervous system that predominantly affects women of reproductive age. With ongoing therapeutic advances, ending common misconceptions related to the disease and pregnancy in MS is crucial for the adherence to MS treatment. The aim of our research was to assess the level of knowledge of MS as a disease in general, to estimate the awareness of reproductive issues in MS, and to evaluate the primary sources of information in persons with MS (PwMS) and persons without MS.

Material and methods: The study included female PwMS aged 18-49 years and male PwMS aged 18-65 years, who were matched with persons without MS of the same age, gender, and education. After obtaining informed consent, participants filled out an online questionnaire distributed via electronic mail between November 1st, 2022 and November 1st, 2023. The questionnaire consisted of a different statements regarding the clinical aspects of MS, pregnancy and reproductive health, primary source of information and subjective assessment of the knowledge.

Results: The study included 410 PwMS and 400 persons without MS. The survey has shown higher levels of knowledge related to the disease in the PwMS group. Seven in ten PwMS disagreed with the false statement that all PwMS at some point lose the ability to walk, while 39.2% of persons without MS agreed. On the other hand, the most common answer, for all study participants, related to reproductive issues in MS was "I do not know". Over two-thirds of PwMS did not have an answer to the question related to the benefits of breastfeeding. The primary source of information for the PwMS group were neurologists (82.7%) and for persons without MS the Internet (54.4%). Persons with MS additionally received information from MS nurses. Both PwMS and persons without MS subjectively evaluated their level of knowledge as an inadequate (49.3% vs. 77.5%).

Conclusion: People with MS still have a low level of information concerning reproductive issues while a considerable number of respondents recognized a deficit of adequate information regarding MS. Availability and validity of information are key aspects to consider in the future. Improvements in access to verified information is needed with an emphasis on reproductive issues.