- Individuals with MS, healthcare providers, and researchers have collaborated and identified priorities for women’s health research in MS.
- Their focus areas included menopause, sexual dysfunction, pregnancy, gynaecologic cancer, hormones, and parenthood.
- Clear research questions emerged, paving the way for targeted investigations to enhance care and quality of life for women living with MS.
Understanding the Landscape of Women’s Health in MS
On International Women’s Day, it’s important to acknowledge the achievements made in understanding and addressing women’s health, especially in conditions like multiple sclerosis (MS).
Research on women’s health in MS has traditionally focused on pregnancy, foetal outcomes, and sexual dysfunction. However, there has been a notable gap in addressing menopause, contraception, and gynaecologic cancers.
To bridge this gap, a global collaborative effort involving people living with MS, healthcare providers, researchers, and advocacy groups was undertaken to explore and identify research priorities for women living with MS, and published their findings in Frontiers in Neurology.
What Did the Researchers Do?
The researchers engaged in a three-step global process to identify research priorities. Firstly, they conducted surveys to determine the most critical research topics. Next, they held focus groups to develop specific research questions within these topics. Finally, a third survey was conducted to prioritise these questions.
What Did the Researchers Find?
The initial surveys attracted responses from 5,266 individuals, including a global survey, and a North American Research Committee on Multiple Sclerosis survey.
Menopause, sexual dysfunction, pregnancy, gynaecologic cancer/cancer screening, hormones, and parenthood emerged as the most important topics.
Focus groups generated 80 potential research questions related to these topics. In the final survey, 712 individuals prioritised these questions. The highest priority questions included:
- How do perimenopause and menopause affect disease activity, disease course, response to treatment, and quality of life in MS?
- What are the most effective strategies for managing issues around sexual intimacy in MS patients?
- Are there long-term effects of disease-modifying therapies on the children of people with MS?
- What are the short and long-term effects of disease-modifying drugs on gynaecologic cancer risk?
- Are there hormone-related treatments that can stabilise fluctuations in MS symptoms?
- How does MS fatigue impact parenting strategies?
What Does This Mean for People with MS?
This global effort has clearly outlined research priorities regarding women’s health issues in MS. Clinicians may find it valuable to incorporate these high-priority topics and questions into routine clinical discussions.
As these priorities are identified, ongoing monitoring of alignment and progress is essential. Furthermore, expanding this priority-setting process to include underrepresented groups of people would be beneficial, leading to more personalised ways to improve the quality of life for women living with MS.
