Perspectives on Neuromyelitis Optica Spectrum Disorders, the Narrative Medicine contribution to care.
Illness experience
Language analysis
NMOSD
Narrative Medicine
Journal
Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology
ISSN: 1590-3478
Titre abrégé: Neurol Sci
Pays: Italy
ID NLM: 100959175
Informations de publication
Date de publication:
Apr 2024
Apr 2024
Historique:
received:
18
07
2023
accepted:
16
10
2023
medline:
18
3
2024
pubmed:
3
11
2023
entrez:
3
11
2023
Statut:
ppublish
Résumé
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. 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. 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. 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.
Sections du résumé
BACKGROUND
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
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
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
CONCLUSIONS
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.
Identifiants
pubmed: 37919441
doi: 10.1007/s10072-023-07146-4
pii: 10.1007/s10072-023-07146-4
pmc: PMC10942930
doi:
Substances chimiques
Aquaporin 4
0
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
1589-1597Informations de copyright
© 2023. The Author(s).
Références
Neurol Neuroimmunol Neuroinflamm. 2019 Jun 20;6(4):e580
pubmed: 31355316
Mult Scler Relat Disord. 2022 Jan;57:103332
pubmed: 35158426
J Pers Soc Psychol. 1989 Feb;56(2):267-83
pubmed: 2926629
Mult Scler Relat Disord. 2020 Nov;46:102542
pubmed: 33296965
Presse Med. 2013 Jan;42(1):3-5
pubmed: 23260758
J Neuroinflammation. 2021 Sep 16;18(1):208
pubmed: 34530847
Curr Opin Neurol. 2019 Jun;32(3):385-394
pubmed: 30893099
BMJ. 1999 Jan 2;318(7175):48-50
pubmed: 9872892
ERJ Open Res. 2018 May 04;4(2):
pubmed: 29740592
Acad Med. 2014 Sep;89(9):1245-51
pubmed: 24979285
CNS Neurosci Ther. 2022 Jul;28(7):981-991
pubmed: 35426485
Patient Educ Couns. 2013 Jun;91(3):280-6
pubmed: 23462070
Mult Scler Relat Disord. 2019 Jul;32:81-87
pubmed: 31063950
J Neuroimmunol. 2016 Apr 15;293:54-58
pubmed: 27049562
Orphanet J Rare Dis. 2022 Dec 9;17(1):428
pubmed: 36494728
Neurology. 1983 Nov;33(11):1444-52
pubmed: 6685237
Acad Med. 2012 Mar;87(3):342-7
pubmed: 22373630
JAMA. 2001 Oct 17;286(15):1897-902
pubmed: 11597295
Ann Neurol. 2016 Feb;79(2):206-16
pubmed: 26537743