Abstract Details

Title Characterizing the Impact of NMOSD on Mobility, Daily Activities, and Social Activities Through Patient Interviews

Topic Autoimmune Neurology

Presentation(s) P13 - Poster Session 13 (8:00 AM-9:00 AM)

Poster/Presentation
Number 6-011

Objective

To better understand from the patient’s viewpoint how neuromyelitis optica spectrum disorder (NMOSD) impacts their life and the adjustments that are required to cope with NMOSD.

Background NMOSD is a rare, complement-mediated autoimmune disease that attacks the spinal cord and optic nerves. Patients with NMOSD experience unpredictable relapses that can cause long-term pain and disability.

Design/Methods Patients (aged ≥18 years) with NMOSD who received immunosuppressant therapy or an approved treatment for NMOSD participated in a mixed-methods study. Using a semi-structured interview guide, personnel trained in qualitative research conducted interviews with patients via telephone. Qualitative data transcripts were coded via ATLAS.ti to assess NMOSD symptoms and patient experiences, and to identify narrative themes in patients living with NMOSD.

Results A total of 34 patients with NMOSD (mean age: 48 years; 82% female) were interviewed. Following their initial NMOSD diagnoses, patients reported a negative impact on their ability to complete daily activities/hobbies (n=21; 62%), associated with a less active lifestyle (n=16; 47%) and a reduction in work hours or work cessation (n=14; 41%). Most patients described living with NMOSD as having to cope with symptoms and mobility issues caused by the disease (n=28; 82%). Other themes included adjusting to a new normal (n=16; 47%), the negative emotional impact of NMOSD (n=15; 44%), and learning to manage their symptoms and treatment schedules (n=14; 41%). In describing life adjustments, patients discussed the use of mobility devices (n=24; 71%), management of heat/cold sensitivity (n=15; 44%), having to rest during activities (n=13; 38%), and requiring caregiver support (n=10; 29%).

Conclusions Patients with NMOSD described the lasting impact that NMOSD has on their lives. Many must adopt the use of mobility devices, endure changes to social activities and work productivity, and often require caregiver support, highlighting the need to prevent future relapses.

Authors/Disclosures
Evanthia Bernitsas, MD, FAAN (Wayne State School of Medicine) PRESENTER	Dr. Bernitsas has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Amgen. Dr. Bernitsas has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Vanda. The institution of Dr. Bernitsas has received research support from Roche/Genentech.
Benjamin J. Osborne, MD, FAAN (Medstar Georgetown University Hospital)	Dr. Osborne has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Alexion. Dr. Osborne has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Alexion. Dr. Osborne has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Amgen. Dr. Osborne has received publishing royalties from a publication relating to health care.
	No disclosure on file
	No disclosure on file
	No disclosure on file
Adrian Kielhorn	Adrian Kielhorn has received personal compensation for serving as an employee of Alexion. Adrian Kielhorn has stock in Alexion.

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