Stephanie Eaneff1, Victor Wang2, Morgan Hanger3, Michael Levy4, Maureen A Mealy5, Alexander U Brandt6, Daniel Eek7, John N Ratchford8, Fredrik Nyberg9, Jonathan Goodall10, Paul Wicks11. 1. PatientsLikeMe Inc., 160 s Street, Cambridge, MA 02142, USA. Electronic address: seaneff@patientslikeme.com. 2. PatientsLikeMe Inc., 160 s Street, Cambridge, MA 02142, USA. Electronic address: vwang@patientslikeme.com. 3. PatientsLikeMe Inc., 160 s Street, Cambridge, MA 02142, USA. Electronic address: mhanger@patientslikeme.com. 4. Department of Neurology, Johns Hopkins Hospital, 600N. Wolfe St., Baltimore, MD 21287, USA. Electronic address: mlevy@jhmi.edu. 5. Department of Neurology, Johns Hopkins Hospital, 600N. Wolfe St., Baltimore, MD 21287, USA. Electronic address: mmealy1@jhmi.edu. 6. Charité-Universitätsmedizin Berlin, Berlin, Germany. Electronic address: Alexander.Brandt@charite.de. 7. AstraZeneca, Pepparedsleden 1, Gothenburg, Sweden. Electronic address: Daniel.Eek@astrazeneca.com. 8. MedImmune, 1 MedImmune Way, Gaithersburg, MD 20878, USA. Electronic address: ratchfordj@medimmune.com. 9. AstraZeneca, Pepparedsleden 1, Gothenburg, Sweden. Electronic address: Fredrik.Nyberg@astrazeneca.com. 10. AstraZeneca, DaVinci Building, Cambridge, United Kingdom. Electronic address: Jonathan.Goodall@astrazeneca.com. 11. PatientsLikeMe Inc., 160 s Street, Cambridge, MA 02142, USA. Electronic address: pwicks@patientslikeme.com.
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.
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.
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