Three quarter of individuals living with multiple sclerosis (MS) are women, and they face unique challenges while living with a chronic disease, including thinking about reproduction, managing pregnancy, breastfeeding, and menopause. Professor Ruth Anne Marrie, from the University of Manitoba in Canada and Past Chair of the International Committee of Clinical Trial, takes the stage in our webinar to highlight these crucial aspects of women’s health in the context of MS and provide recommendations.
The webinar is moderated by Rachel Horne, a journalist with MS and founder of the Rachel Horne Prize for Women’s Research. The expert panel features also Professor Lindsay Ross, from the Cleveland Clinic Mellen Center in US, and Professor Mar Tintoré from the Catalonia MS Center (Cemcat) and Vall d’Hebron University in Spain.
Professor Ross highlights that when setting priorities for women’s health topics, the aim was to address a global audience to gain insight into where the field should focus its efforts first. Over 5,000 people responded to the online survey from the broad MS community: persons with MS, their caregivers, clinicians, researchers, patient advocacy organisations. 85% of the respondents were from North America, 12% from Europe and 3% from the Asian-Pacific regions. 85% of the respondents were individuals with MS, 3% their care partners and 12% clinicians, researchers, and patients advocate. They selected the top five topic areas in the field of MS that need attention: menopause, sexual dysfunction, pregnancy, gynecologic cancer and cancer screening, and the role of sex hormones.
In particular, the most relevant research questions in these priority areas, identified by the focus groups and ranked by the participants, were: 1) How do menopause and perimenopause affect the disease activity course and response to disease modifying therapies (DMT)? 2) What are the most effective strategies for managing issues around sexual intimacy including those related to low sexual desire? 3) What are the long-term effects of DMTs on children of persons with MS? 4) What are the short- and long-term effects of DMTs on gynecologic cancer risks? 5) Are there hormones related treatments that may help stabilise the different MS symptoms?
Professor Mar Tintoré emphasises that proactive discussions with individuals with MS are crucial. These women’s health topics should be integrated in the standard clinical care. Family planning must be discussed when choosing the DMTs option. Clinicians need to discuss with patients the different challenges that come when we are parents. “Mummy, you are always tired”, is a common complaint from children of parents with MS. Clinicians need to reduce the misinformation among individuals with MS around fertility treatments, breastfeeding, and other important women’s health topics. Moreover, the research gaps need to be addressed.
Importantly, the issue of treatment inertia needs to be tackled. Women who are planning to become pregnant are less frequently offered high-efficacy treatments. And this is not acceptable.
Professor Marrie recommends that founders view these topics as a priority. It is essential for all the organizations that kindly assisted in distributing the survey to continue sharing the most relevant and up-to-date information globally, not only in English-speaking countries. “When I read the results of the survey, I felt a sense of disappointment that we still don’t have a clear understanding of issues like menopause”, Professor Marrie says in response to a question from the audience. It would be important to gather information and tailor specific strategies to each person’s life stage.
Rachel Horne also raises the issue of domestic abuse and violence. For a person with MS, being both a woman and disabled, there is limited information available. There needs to be more awareness, and healthcare providers should screen patients about whether they feel safe at home. Professor Tintoré says that at Cemcat they make this screening to people coming for rehabilitation. They ask whether people feel uncomfortable at home or are experiencing any form of isolation. However, these issues do not always surface right away. Rehabilitation programs usually last for months, and patients tend to raise these concerns only when they feel comfortable and have developed a trusting relationship with their healthcare provider. When someone is vulnerable, especially with a cognitive impairment, the support of a caregiver may be crucial. However, these are difficult topics to address, and sometimes there is not an easy solution. Professor Marrie questions whether healthcare providers have the necessary resources to fully support patients, particularly when individuals need to leave their home but have nowhere else to go. She also highlights challenges related to financial support or medication insurance. ‘Are healthcare givers adequately equipped to help people through these situations?’, she wonders. As individuals transition out of rehabilitation, it is vital that they receive the proper support and are ensured a safe environment.
For more information on setting priorities in women’s health topics, please refer also to our MS Research Spotlight.