The patient journey with NMOSD: From initial diagnosis to chronic condition.

ABSTRACT:

Objective

To better understand the patient experience with neuromyelitis optica spectrum disorder (NMOSD) through the course of the illness.

Background

NMOSD is a rare autoimmune disorder that causes recurrent inflammatory attacks of the optic nerve, spinal cord, and brain. Knowledge and awareness of NMOSD in the general medical community are often limited, resulting in potential delays in diagnosis and treatment.

Design/methods

We developed a comprehensive 101-question survey to understand the patient's perspective on their journey from initial presentation to present condition. The survey covered basic demographics, symptoms, medical tests used to reach a diagnosis, and the patient's psychosocial responses to their diagnosis. The survey included questions to determi

SUBMITTER: Delgado-Garcia G 

PROVIDER: S-EPMC9488131 | biostudies-literature | 2022

REPOSITORIES: biostudies-literature