A new study will explore menopause in women with MS, aiming to identify care gaps and create resources to help address them.
The study is being funded by the National Multiple Sclerosis Society.
It will use input from patients and healthcare providers and be carried out by researchers at UVA Health in Virginia in partnership with the nonprofit Accelerated Cure Project for Multiple Sclerosis.
Stephanie Buxhoeveden, ACP’s chief scientific officer, said: “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.”
MS, or multiple sclerosis, is a condition in which the immune system attacks the protective covering around nerves.
It affects women more often than men, but relatively little research has explored how it intersects with health issues such as menopause.
Through its Advancing Women’s Health initiative, the National Multiple Sclerosis Society is investing US$2.3m in projects to help address these gaps.
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 and MS patient, helped carry out a scoping review of the scientific literature to see what is known about how women with MS experience menopause.
The results showed menopause is associated with fewer relapses but greater functional decline. Yet, of the 19 studies reviewed, not one 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.
The goal is to identify where current care falls short, then create new resources, including educational materials for patients and guidance for providers, to help close those gaps and improve care.
Alexandra Simpson, an assistant professor of neurology at UVA Health, is leading the study.
She said: “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.”
UVA Health and ACP will work together to design survey instruments for the study and analyse the results.
The study also aims to use iConquerMS and other ACP resources to help recruit participants.
“This study lets us do what ACP does best: put the community at the centre,” 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.”
