Researchers conducted global surveys and focus groups to understand knowledge gaps in addressing health needs for women living with multiple sclerosis. The key themes that emerged as priority issues depended on the participant group (including people living with MS, care partners, healthcare providers, researchers, and patient advocacy groups). Overall, key themes included menopause, sexual dysfunction, pregnancy, hormones, gynecologic cancer (and gynecologic cancer screening) and parenthood.
The authors, led by Drs. Lindsay Ross (Cleveland Clinic) and Ruth Ann Marrie (University of Manitoba) on behalf of the
International Advisory Committee on Clinical Trials in MS, have
published their results to promote future research to address these needs.
This is one of several ongoing activities of the International Advisory Committee on Clinical Trials in Multiple Sclerosis, which is jointly supported by the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) and the US National Multiple Sclerosis Society.
Background: A previous paper by members of this team reviewed published literature related to women’s health issues in MS. They found that most studies focused on pregnancy, outcomes for the baby, and sexual dysfunction. Yet there are many other understudied topics that leave women with MS and their health care providers without the solid evidence needed to help with care decisions. These include questions about menopause, hormone replacement therapy, birth control, assisted reproduction, cancer screening and gender identity.
This Study: To identify the most important research priorities around women's health for women living with MS, the team conducted several surveys, engaging more than 5,000 participants including people living with MS, care partners, healthcare providers, researchers, and patient advocacy groups. They also conducted follow-up focus groups to develop research questions related to key topics. Through another global survey, these research questions were ranked in priority order.
As might be expected, topic rankings differed according to the type of participant, age group, geographic region, gender, disability status and other factors. Table 4 in the paper shows the rank order of research questions. In general, some of the top-ranked research questions in key topic areas include:
- Menopause: How does menopause affect MS disease activity, disease course, response to treatments and quality of life? Can treatments for menopause symptoms improve some MS symptoms too?
- Sex Hormones: Are there hormone related treatments that can help address MS symptoms? How might sex hormones impact MS risk, disease activity, progression and fatigue?
- Sexual Dysfunction: What are the best ways to manage or prevent problems with sexual intimacy including low desire, MS symptoms and physical functions?
- Pregnancy: How do disease-modifying therapies affect fertility, course of the pregnancy, labor and breastfeeding, and do the therapies have long-term impacts on a parent with MS’s children?
- Parenthood: How does MS fatigue impact parenting? Does the health of a parent with MS affect their children?
- Gynecological Cancer and Screening: What are short- and long-term risks of developing gynecological cancer related to the use of disease-modifying therapies? When should screening be done and for how long after the use of disease-modifying therapies?
The complete list of research questions in Table 4 can help direct research efforts focused on women’s health issues in MS. They may also help clinicians understand key questions on the minds of the people to whom they provide care and inform discussions during office visits.
“
Priority setting: women’s health topics in multiple sclerosis,” by Drs. Lindsay Ross, Marcia Finlayson, Maria Pia Amato, Jeffrey Alan Cohen, Kerstin Hellwig, Mar Tintore, Sandra Vukusic, Amber Salter, and Ruth Ann Marrie, was published on February 19, 2024 in
Frontiers of Neurology.