Characteristics of recurrence risk perception and coping strategies in patients with neuromyelitis optica spectrum disorder: A qualitative study
Journal: Multiple Sclerosis and Related Disorders; December 28, 2023
Author(s): Haifen Liao, Ping Fan, Hengfang Ruan, Wei Qiu, Meifen Zhang, Huijuan L
How do NMOSD patients perceive and deal with their risk of relapses?
Recurrent relapses in NMOSD lead to increasing disability. To some extent, this can be avoided if patients accurately perceive and respond to their risk of having a relapse. This study used face-to-face, semi-structured interviews with 15 NMOSD patients to assess how patients perceive their risk of having a relapse and associated coping strategies. The themes that came up in the interviews included patients’ perceptions of the possibility and warning signs of a relapse, understanding and misconceptions about relapse triggers, consequences of a relapse, and coping strategies. The findings showed that the chances of a relapse tend to be underestimated by patients until they have had two or more relapses and overestimated after two or more relapses. A potential trigger for relapses, which can be easily managed, is non-compliance to recommended medication protocols. Relapses have significant negative effects on patients, and patients are therefore eager to discuss treatment planning and relapse management with their doctors.
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