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Open Access 03-11-2023 | Neuromyelitis Optica Spectrum Disease | Original Article

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

Authors: Massimo Filippi, Giovanna Borriello, Francesco Patti, Matilde Inglese, Maria Trojano, Fabiana Marinelli, Clara Chisari, Pietro Iaffaldano, Chiara Zanetta, Paola Chesi, Roberta Termini, Maria Giulia Marini

Published in: Neurological Sciences | Issue 4/2024

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 caregivers and 13 healthcare providers participated in the research. Patients reported symptoms limiting their daily activities and strongly impacting their social dimension. We noticed improvements across disease duration, whilst the persistence of limitations was recurrent in patients with longer diagnoses.

Caregivers’ narratives mainly share experiences of their daily life changes, the burden of the caregiving role and the solutions identified, if any. Healthcare providers defined their role as a guide.

Conclusion

Limitations in activities are prominent in the lives of people with NMOSD, along with fatigue. Family members are the weakest link in the chain and need information and support. Healthcare professionals are attentive to the helping dimension.

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Title: Perspectives on Neuromyelitis Optica Spectrum Disorders, the Narrative Medicine contribution to care
Authors: Massimo Filippi
Giovanna Borriello
Francesco Patti
Matilde Inglese
Maria Trojano
Fabiana Marinelli
Clara Chisari
Pietro Iaffaldano
Chiara Zanetta
Paola Chesi
Roberta Termini
Maria Giulia Marini
Publication date: 03-11-2023
Publisher: Springer International Publishing
Keywords: Neuromyelitis Optica Spectrum Disease
Care
Published in: Neurological Sciences / Issue 4/2024
Print ISSN: 1590-1874
Electronic ISSN: 1590-3478
DOI: https://doi.org/10.1007/s10072-023-07146-4

Keynote webinar | Spotlight on medication adherence

Springer Medicine

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

Abstract

Background

Methods

Results

Conclusion

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Background

Methods

Results

Conclusion

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