Patients with neuromyelitis optica spectrum disorder (NMOSD) of all ages are affected by some level of social isolation regardless of their degree of disability or the duration of their disease, according to a new study published in Multiple Sclerosis and Related Disorders.
NMOSD is a rare disease that is associated with the inflammation and demyelination of the central nervous system. It mainly involves the optic nerve and the spinal cord, and it is often associated with considerable disability. This can lead to patients experiencing social isolation.
Read more about the clinical features of NMOSD
In the present study, a team of researchers from China led by Meifen Zhang, PhD, investigated the social isolation experiences of patients with NMOSD. They conducted in-depth, face-to-face, semistructured interviews with 20 NMOSD patients aged 14 to 68 years and thematically analyzed the data.
The disease duration varied from 1 month to 30 years among patients, and their Expanded Disability Status Scale (EDSS) scores ranged from 2 to 8.
The researchers identified 4 major themes following the interviews. These were perceptions of social isolation, reasons for isolation, the impacts of isolation, and potential solutions.
Upon analysis of the patients’ answers, the researchers found that “isolation occurs as a result of multiple interactions between physiological, cognitive-psychological, and environmental factors.”
They also found that social isolation mainly affected the patients physically, psychologically, and in terms of interactions with their families and society at large.
The team suggested that social isolation could be improved with comprehensive interventions. For example, increasing the understanding of nursing staff about the problem of social isolation could ensure they implement rehabilitation interventions for their patients at multiple levels. These interventions could improve patient willingness and ability to participate in social events, thereby reducing social isolation.
Liao H, Fan P, Ruan H, et al. Experiences of social isolation among patients with neuromyelitis optica spectrum disorder in China: a qualitative study. Mult Scler Relat Disord. Published online February 20, 2022. doi:10.1016/j.msard.2022.103711