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Mult Scler Relat Disord. 2016 Sep;9:56-9. doi: 10.1016/j.msard.2016.06.015. Epub 2016 Jul 1.

Women's experiences of menopause in an online MS cohort: A case series.

Author information

1
Partners Multiple Sclerosis Center, Department of Neurology, Brigham and Women's Hospital, Brookline, MA 02445, USA; Harvard Medical School, Boston, MA 02115, USA; Center for Neurologic Diseases, Harvard Medical School, 77 Avenue Louis Pasteur, NRB168, Boston, MA 02115, USA; University of California San Francisco Department of Neurology, San Francisco, CA 94158, USA. Electronic address: riley_bove@post.harvard.edu.
2
PatientsLikeMe, Inc., Cambridge, MA, USA. Electronic address: tvaughan@patientslikeme.com.
3
Partners Multiple Sclerosis Center, Department of Neurology, Brigham and Women's Hospital, Brookline, MA 02445, USA; Harvard Medical School, Boston, MA 02115, USA; Center for Neurologic Diseases, Harvard Medical School, 77 Avenue Louis Pasteur, NRB168, Boston, MA 02115, USA. Electronic address: tchitnis@rics.bwh.harvard.edu.
4
PatientsLikeMe, Inc., Cambridge, MA, USA. Electronic address: pwicks@patientslikeme.com.
5
Partners Multiple Sclerosis Center, Department of Neurology, Brigham and Women's Hospital, Brookline, MA 02445, USA; Harvard Medical School, Boston, MA 02115, USA; Center for Neurologic Diseases, Harvard Medical School, 77 Avenue Louis Pasteur, NRB168, Boston, MA 02115, USA. Electronic address: pdejager@rics.bwh.harvard.edu.

Abstract

BACKGROUND:

Many women with multiple sclerosis (MS) are postmenopausal. Previously reported findings from an online MS cohort suggested that earlier, surgical menopause may be associated with higher patient-reported MS severity scores.

OBJECTIVE:

To explore experiences of menopause in a series of MS women responding to a reproductive survey from an online research platform, PatientsLikeMe (PLM).

METHODS:

The free-text responses from a detailed reproductive history survey deployed to PLM members were analyzed using grounded theory approach.

RESULTS:

Of the 208 free text responses, 127 responses related to menopause. Five themes emerged: (1) perimenopausal onset of MS symptoms, (2) overlap of MS and menopausal symptoms, (3) MS exacerbations and pseudo-exacerbations triggered by hot flashes, (4) escalation of disease course after menopause, including increasing fatigue, cognitive disturbance, and other symptoms; and (5) effect of HRT on MS symptoms. Some women reported no effects of menopause or HRT.

CONCLUSION:

Given an aging population and a median age of individuals currently living with MS very close to menopausal age in many cohorts, there is a pressing need to understand the impact of menopause on MS course. Qualitative responses in this study illustrated several specific themes that require quantitative testing in clinic-based cohorts.

KEYWORDS:

Hot flashes; Menopause; Multiple sclerosis; Online communities; Patient-powered research networks; Quality of life

PMID:
27645345
PMCID:
PMC5031240
DOI:
10.1016/j.msard.2016.06.015
[Indexed for MEDLINE]
Free PMC Article

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