title: Women's experiences of menopause in an online MS cohort: A case series.
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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: 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.
authors.forename: R
authors.initials: R
authors.lastname: Bove
authors.affiliation: PatientsLikeMe, Inc., Cambridge, MA, USA. Electronic address: tvaughan@patientslikeme.com.
authors.forename: T
authors.initials: T
authors.lastname: Vaughan
authors.affiliation: 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.
authors.forename: T
authors.initials: T
authors.lastname: Chitnis
authors.affiliation: PatientsLikeMe, Inc., Cambridge, MA, USA. Electronic address: pwicks@patientslikeme.com.
authors.forename: P
authors.initials: P
authors.lastname: Wicks
authors.affiliation: 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.
authors.forename: P L
authors.initials: PL
authors.lastname: De Jager
mesh_terms: D015331:Cohort Studies; D005260:Female; D006801:Humans; D020407:Internet; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000453:epidemiology / Q000503:physiopathology*; D017698:Postmenopause; D011795:Surveys and Questionnaires
keywords: Hot flashes; Menopause; Multiple sclerosis; Online communities; Patient-powered research networks; Quality of life