Patients report worse MS symptoms after menopause: findings from an online cohort

R Bove; B C Healy; E Secor; T Vaughan; B Katic; T Chitnis; P Wicks; P L De Jager

doi:10.1016/j.msard.2014.11.009

Patients report worse MS symptoms after menopause: findings from an online cohort

Mult Scler Relat Disord. 2015 Jan;4(1):18-24. doi: 10.1016/j.msard.2014.11.009. Epub 2014 Dec 9.

Authors

R Bove¹, B C Healy², E Secor³, T Vaughan⁴, B Katic⁵, T Chitnis⁶, P Wicks⁷, P L De Jager⁸

Affiliations

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. Electronic address: rbove@partners.org.
² 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; Massachusetts General Hospital Biostatistics Center, Boston, MA 02114, USA. Electronic address: bchealy@partners.org.
³ Center for Neurologic Diseases, Harvard Medical School, 77 Avenue Louis Pasteur, NRB168, Boston, MA 02115, USA. Electronic address: secor.elizabeth@gmail.com.
⁴ PatientsLikeMe, Inc., Cambridge, MA, USA. Electronic address: tvaughan@patientslikeme.com.
⁵ PatientsLikeMe, Inc., Cambridge, MA, USA. Electronic address: bkatic@patientslikeme.com.
⁶ 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.
⁷ PatientsLikeMe, Inc., Cambridge, MA, USA. Electronic address: pwicks@patientslikeme.com.
⁸ 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.

PMID: 25787049
DOI: 10.1016/j.msard.2014.11.009

Abstract

Background: Many women with multiple sclerosis (MS) are postmenopausal, yet the impact of menopause on MS symptoms is unknown.

Objective: To investigate patient-reported impact of menopause in a large online research platform, PatientsLikeMe (PLM).

Methods: A detailed reproductive history survey was deployed to PLM members, and responses were linked to PLM׳s prospectively collected patient-reported severity score (MS Rating Scale, MSRS). The MSRS has previously shown good correlation with physician-derived EDSS scores.

Results: Of the 513 respondents, 55% were postmenopausal; 54% of these reported induced menopause. Median age at natural menopause was 51. Surgical menopause occurred at an earlier age (p<0.001) and was associated with more hormone replacement therapy use (p=0.02) than natural menopause. Postmenopausal status, surgical menopause, and earlier age at menopause were all associated with worse MSRS scores (p≤0.01) in regressions adjusting for age, disease type and duration.

Conclusion: Postmenopausal patients in this study reported worse MS disease severity. Further, this study highlights a utility for online research platforms, which allow for rapid generation of hypotheses that then require validation in clinical settings.

Keywords: Estrogen; Hot flashes; Menopause; Multiple sclerosis; Online communities; Patient-powered research networks.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adult
Analysis of Variance
Cohort Studies
Disability Evaluation
Female
Humans
Linear Models
Middle Aged
Multiple Sclerosis / physiopathology*
Multiple Sclerosis / psychology*
Online Systems
Postmenopause / physiology*
Severity of Illness Index
Surveys and Questionnaires
Young Adult