Experiences of social isolation among patients with neuromyelitis optica spectrum disorder in China: A qualitative study

Abstract

BackgroundNeuromyelitis optica spectrum disorder (NMOSD) is an autoimmune inflammatory demyelinating disease of the central nervous system, which mainly involves the optic nerve and spinal cord and has high recurrence and disability rates. Patients with this condition are prone to social isolation, which has not been widely assessed. The purpose of this study was to investigate the experience of social isolation in patients with NMOSD. MethodsA qualitative descriptive approach was used to conduct in-depth, face-to-face, semi-structured interviews. Data were analyzed using thematic analysis. ResultsA total of 20 patients (19 females, 1 male) completed the interview. Patients ranged in age from 14 to 68 years, with disease duration from 1 month to 30 years and Expanded Disability Status Scale scores from 2.0 to 8.0; 60% of patients were unemployed. Four major themes were identified: (1) perception of social isolation, (2) reasons for isolation, (3) impacts of isolation, and (4) potential solutions. ConclusionsSocial isolation affects patients of all ages with different levels of disability and duration of NMOSD. Isolation occurs as a result of multiple interactions between physiological, cognitive-psychological, and environmental factors. The effects of social isolation mainly involve physical, psychological, and family-society aspects. Comprehensive interventions to improve social isolation should be carried out based on these multidimensional influencing factors.