Priority setting: women's health topics in multiple sclerosis

Area of Science:

• Neurology
• Women's Health
• Public Health

Background:

• Existing research on women's health in multiple sclerosis (MS) predominantly covers pregnancy and sexual dysfunction.
• Significant knowledge gaps exist regarding menopause, contraception, and gynecologic cancers in women with MS.
• The relative importance of these knowledge gaps to individuals with MS and other stakeholders remains unclear.

Purpose of the Study:

• To collaboratively establish research priorities for women's health in the context of multiple sclerosis (MS).
• To engage diverse partners, including individuals with MS, healthcare providers, researchers, and advocacy groups, in setting future research agendas.

Main Methods:

• A three-step global engagement process was utilized, involving surveys and focus groups.
• Initial surveys identified high-priority broad research topics relevant to women's health in MS.
• Focus groups developed specific research questions, which were then prioritized by a final survey.

Main Results:

• Menopause, sexual dysfunction, pregnancy, gynecologic cancer/screening, hormones, and parenthood emerged as key research areas.
• Eighty potential research questions were generated across these topics.
• Specific high-priority questions included the impact of menopause on MS, managing sexual intimacy, long-term effects of MS therapies on children, gynecologic cancer risk, hormone treatments for MS symptoms, and parenting challenges due to MS fatigue.

Conclusions:

• A collaborative process has successfully delineated research priorities for women's health issues in multiple sclerosis (MS).
• Future research endeavors should align with and be monitored against these established priorities.