A team of researchers set out to find out the extent to which women’s health issues have been studied in persons with MS. The goal was to determine where knowledge gaps exist to focus research that will improve understanding, medical care, and outcomes. The team searched the published medical literature and found 353 relevant papers. Many of these papers focused on pregnancy, pregnancy outcomes, and sexual dysfunction. Very few papers focused on other topics important to women living with MS, including menopause, birth control, assisted reproduction, cancer screening, and gender identity.
The team has now
published their findings with recommendations on impactful research topics and quality of reporting to improve evidence-based care for women with all forms of MS. This important effort was led by Ruth Ann Marrie, PhD (University of Manitoba) under the auspices of the
International Advisory Committee on Clinical Trials in MS, which is jointly supported by the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) and the National MS Society. Lindsay Ross, MD (Cleveland Clinic), a National MS Society Sylvia Lawry Physician Fellow, is first author of the paper.
Background and Details
Using defined criteria for the types of papers to include, the team reviewed 1,041 papers, then narrowed down and extracted data from 353 papers for the types of research topics covered and participant characteristics.
- The most common topics were pregnancy and related issues (about one-third of all studies), fetal/neonatal outcomes, and sexual dysfunction.
- Common issues studied in the pregnancy studies included MS relapses, pregnancy complications, and exposure to disease-modifying therapies.
- The team found that few studies focused on other topics important to women living with MS, including menopause, birth control, assisted reproduction, cancer screening, and gender identity.
- Most studies reported on the type of MS of study participants. Many studies included women with all types of MS. Across studies, most involved women with relapsing-remitting MS (40%), followed by secondary progressive MS (16%) and primary progressive MS (14%). However, within individual studies, most participants had relapsing-remitting MS.
- Most of the studies (87%) did not report on the race and ethnicity of the study participants. When race and ethnicity was reported, the vast majority of participants were white.
Knowledge Gaps and Recommendations
The team identified knowledge gaps that leave women with MS and their physicians without the solid evidence needed to help with care decisions. These include:
- Even though there were many studies around the topic of pregnancy, pregnant women are typically excluded from clinical trials because of fears of toxicity, so information on the use of newer disease-modifying therapies during pregnancy and while breastfeeding is limited.
- Although there is growing evidence for the influence of hormones during the course of MS, there is limited information that could help guide decisions around these topics, and additional research is warranted on:
- the use of birth control hormones
- the impacts of menopause and hormone replacement
- the impacts of hormones associated with assisted reproduction
- The lack of racial and ethnic diversity in study participants limits knowledge about the applicability of findings to women who were underrepresented in the studies. Future studies should increase efforts to recruit participants from diverse backgrounds and should include race and ethnic characteristics in their study results.
- Powerful immune-suppressing MS therapies may increase risks of cancer. Yet health disparities exist in terms of breast and gynecological cancer screenings in women of lower socioeconomic status as well as those with physical disabilities that make some tests inaccessible. More information is needed on how such disparities and barriers may impact women with MS.
- Most of the studies were conducted in North America and Europe, so future research should include women with MS from underrepresented areas, such as Asia-Pacific and African regions.
“
Women’s Health in Multiple Sclerosis: A Scoping Review,” by Lindsay Ross, Huah Shin Ng, Julia O’Mahony, Maria Pia Amato, Jeffrey A. Cohen, Mary Pat Harnegie, Kerstin Hellwig, Mar Tintore, Sandra Vukusic, and Ruth Ann Marrie on behalf of the International Advisory Committee on Clinical Trials in MS, was published in
Frontiers in Neurology on January 31, 2022. This open-access paper may be read by anyone.