New research project to explore how women with MS experience menopause
Study seeks to develop resources, guidance to address gaps in care
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Through its Advancing Women’s Health initiative, the NMSS is investing $2.3 million in projects to help address gaps in resources for women with MS.
- A new study will explore how women with multiple sclerosis experience menopause.
- Research indicates menopause may reduce relapses, but increase functional decline.
- The study aims to identify care gaps and develop resources for women with MS during menopause.
A new study being funded by the National Multiple Sclerosis Society (NMSS) will seek to better understand how women with multiple sclerosis (MS) navigate menopause and develop resources to address gaps in care.
The study, “The Menopausal Transition, MS Symptom Management, and Multidisciplinary Care Gaps,” will use input from patients and healthcare providers and be conducted by researchers at UVA Health in Virginia in partnership with the nonprofit Accelerated Cure Project for Multiple Sclerosis (ACP).
“Menopause is a significant life transition for any woman. For women with MS, the picture is even more complex, yet it’s been largely invisible in the research,” Stephanie Buxhoeveden, ACP’s chief scientific officer, said in a press release from the nonprofit.
MS disproportionately affects women, but relatively little research has explored how the disease intersects with health issues such as menopause. Through its Advancing Women’s Health initiative, the NMSS is investing $2.3 million in projects to help address these gaps.
How women with MS experience menopause
The new study is one of 11 research projects funded through the initiative. It grew out of work by iConquerMS, ACP’s network of people with MS, caregivers, and researchers who want to contribute to advancing MS research.
Dawn Morgan, an iConquerMS member an MS patient, helped conduct a scoping review of the scientific literature to see what’s known about how women with MS experience menopause. The results showed menopause is associated with less relapse activity, but more functional decline. Yet, of the 19 studies reviewed, not one actually engaged with the women themselves to understand their experiences.
“This study began with a question I raised as a patient advocate and iConquerMS member and it became a research priority because the gap was undeniable,” Morgan said. “For too long, women with MS have navigated menopause without evidence-based guidance or clinical support. Seeing patient-powered advocacy translate into funded science is exactly why this work matters.”
As part of the study, women with MS who are undergoing menopause, along with their healthcare providers, will be surveyed and interviewed. Its goal is to identify places where current care isn’t adequate, then create new resources — including educational materials for patients and guidance for providers — to help close those gaps, and improve care.
“We have limited data to guide women with MS through the menopausal transition, even though many experience meaningful changes in symptoms and quality of life. Bringing together the perspectives of women with MS and healthcare providers is critical to understanding where opportunities exist to improve support and care during this stage,” said Alexandra Simpson, MD, an assistant professor of neurology at UVA Health, who is leading the study.
UVA and ACP will work together to design survey instruments for the study and analyze the results. The study aims to leverage iConquerMS and other ACP resources to help recruit participants.
“This study lets us do what ACP does best: put the community at the center,” Buxhoeveden said. “By building the survey instruments with our Women’s Health Research Committee and recruiting through iConquerMS, we can make sure the questions we’re asking actually reflect what women are living with.”
Women with MS who are interested in participating or learning more about this study can reach out to Buxhoeveden at [email protected].
