Perspectives on Neuromyelitis Optica Spectrum Disorders, the Narrative Medicine contribution to care.

ABSTRACT:

Background

This research aimed to investigate the experience of Neuromyelitis Optica Spectrum Disorders (NMOSD) by integrating the perspectives of patients, caregivers and clinicians through narrative-based medicine to provide new insights to improve care relationships.

Methods

The research was conducted in the second half of 2022 and involved six Italian centres treating NMOSD and targeted adult patients, their caregivers and healthcare providers to collect the three points of view of living with or caring for this rare disease, still difficult to treat despite the pharmacological options. Narratives followed a structured outline according to the time: yesterday-today-tomorrow, to capture all disease phases.

Results

Twenty-five patients diagnosed with NMOSD, ten care

SUBMITTER: Filippi M 

PROVIDER: S-EPMC10942930 | biostudies-literature | 2024 Apr

REPOSITORIES: biostudies-literature