Characterizing the Impact of NMOSD on Mobility, Daily Activities, and Social Activities Through Patient Interviews
Evanthia Bernitsas1, Benjamin Osborne2, Natalie Taylor3, Fanyang Zeng3, Milena Anatchkova3, Adrian Kielhorn4
1Wayne State School of Medicine, 2Medstar Georgetown University Hospital, 3Evidera, 4Alexion, AstraZeneca Rare Disease
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.