Cognitive Concerns in Women With MS at Menopause: Patient-identified Care Gaps
Min Ji Kim1, Alyssa Nylander1, Stephanie Hsu2, Ayushi Balan1, Annika Anderson3, William Rowles1, Jennifer Reihm1, Riley Bove1
1UCSF, 2Cornell University, 3UCLA David Geffen School of Medicine
Objective:
To qualitatively explore cognitive symptoms experienced by women with MS during perimenopause and identify clinical care gaps.
Background:
Cognitive concerns are common during perimenopause/early postmenopause in the general population, and in women with multiple sclerosis (MS). These concerns relate to other menopausal symptoms (hot flashes, poor sleep), but clinical guidance in addressing them is limited.
Design/Methods:
33 peri- and postmenopausal cis-women with MS enrolled in a myelin repair trial (ReWRAP; NCT04002934) participated in detailed interviews focused on cognitive changes. Thematic analysis was used to identify clinical care gaps.
Results:
Mean participant age was 53, mean MS duration was 11 years, median EDSS was 2.5; 30.3% had SDMT < 50. Overall, 87.9% endorsed cognitive changes during menopause, particularly in memory, word-finding, organization and cognitive fatigue. Three key care gaps were identified.
(1) Clarify symptom attribution uncertainty; 13/33 (40%) participants struggled to distinguish whether cognitive changes stemmed from MS, menopause, or both. This ambiguity created clinical uncertainty regarding which team should guide management and added burden navigating health systems. A collaborative, comprehensive care model was seen as essential.
(2) Contextualize the magnitude of lived cognitive changes. Since participants worried often unnecessarily that these changes represented MS progression and/or dementia, clinicians might contextualize these within the general perimenopausal population (acknowledging the insensitivity of cognitive batteries to MS- and menopause-related changes), starting before menopause, to alleviate additional worry.
(3) Cognitive energy/effort management: 73% described a sensation of cognitive “overwhelm” and emotional distress in response to perceived cognitive challenges. They emphasized the potential impact of specific neuropsychological strategies to optimize cognitive energy and effort, guide work accommodations, and navigate interpersonal dynamics.
Conclusions:
The care gaps identified by participants (integrated care; anticipatory, contextual education; targeted neuropsychological support) can be readily implemented in many MS care centers and could substantially alleviate the cognitive burden experienced by women with MS during perimenopause.
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