Patient perspectives on neuromyelitis optica spectrum disorders: Data from the PatientsLikeMe online community

Stephanie Eaneff, Victor Wang, Morgan Hanger, Michael Levy, Maureen A. Mealy, Alexander U. Brandt, Daniel Eek, John N. Ratchford, Fredrik Nyberg, Jonathan Goodall, Paul Wicks

Research output: Contribution to journalArticlepeer-review

Abstract

Background Few studies have evaluated patient perspectives on neuromyelitis optica (NMO) and NMO spectrum disorder (NMOSD). Objective Describe patient-reported clinical and treatment experience in NMOSD and compare disease characteristics of NMOSD with those of multiple sclerosis (MS). Methods This retrospective, observational study included 522 members with NMO or NMOSD (hereafter collectively referred to as NMOSD) from PatientsLikeMe (PLM), an online patient community. Data describing member demographics, symptoms, and treatments were collected, analysed descriptively, and compared with data from PLM members with MS. Results Fatigue, pain, and stiffness/spasticity were each rated as moderate to severe by more than half of NMOSD members, and 59% reported that their health limited the type of work or other activities they could perform all or most of the time. Overall, symptom severity and disability levels were comparable between NMOSD and MS members; however, NMOSD members were more likely than MS members to attribute disability to vision-related symptoms and were less likely to report moderate to severe cognitive and emotional symptoms, including brain fog, depressed or anxious mood, and emotional lability. Conclusion This analysis underscores the challenges of living with fatigue, pain, stiffness/spasticity, and visual difficulties, prevalent NMOSD symptoms among members of the PLM community.

Original languageEnglish (US)
Pages (from-to)116-122
Number of pages7
JournalMultiple Sclerosis and Related Disorders
Volume17
DOIs
StatePublished - Oct 2017

Keywords

  • Devic's syndrome
  • Multiple sclerosis
  • Neuromyelitis optica
  • Patient Reported Outcomes
  • Quality of life

ASJC Scopus subject areas

  • Neurology
  • Clinical Neurology

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