R Bove1, T Vaughan2, T Chitnis3, P Wicks4, P L De Jager5. 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.
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.
Authors: R Bove; B C Healy; E Secor; T Vaughan; B Katic; T Chitnis; P Wicks; P L De Jager Journal: Mult Scler Relat Disord Date: 2014-12-09 Impact factor: 4.339
Authors: Riley Bove; Elizabeth Secor; Brian C Healy; Alexander Musallam; Timothy Vaughan; Bonnie I Glanz; Emily Greeke; Howard L Weiner; Tanuja Chitnis; Paul Wicks; Philip L De Jager Journal: PLoS One Date: 2013-03-20 Impact factor: 3.240