Patient experiences of narcolepsy and idiopathic hypersomnia in the Nordics: a patient journey map.
central disorders of hypersomnolence
idiopathic hypersomnia
lived experience
living with narcolepsy
patient experience
patient journey
Journal
Journal of sleep research
ISSN: 1365-2869
Titre abrégé: J Sleep Res
Pays: England
ID NLM: 9214441
Informations de publication
Date de publication:
26 Oct 2024
26 Oct 2024
Historique:
revised:
13
09
2024
received:
06
05
2024
accepted:
21
09
2024
medline:
27
10
2024
pubmed:
27
10
2024
entrez:
27
10
2024
Statut:
aheadofprint
Résumé
Central disorders of hypersomnolence (CDH) are chronic diseases that significantly impact the lives of affected individuals. We aimed to explore the perspectives of individuals with narcolepsy type 1 (NT1), narcolepsy type 2 (NT2), and idiopathic hypersomnia (IH), and the challenges they encounter in their daily lives and within the healthcare systems in the Nordics. Interviews with patients (N = 41) and healthcare professionals (n = 14) and a patient survey (n = 70) were conducted in 2022 in Denmark, Sweden, Finland, and Norway to develop a patient journey map that visualises the patient with CDH journey and provides insights into the difficulties faced by these individuals. The patient journey mapping approach was chosen to focus on the processes and experiences of patients, highlighting the challenges they confront. Our findings revealed that the process of receiving a CDH diagnosis, as well as subsequent misdiagnoses and treatment, can be protracted and burdensome. CDH diagnoses remain poorly understood by neurologists, general practitioners, and the public, resulting in adverse consequences, with patients reporting a mean (standard deviation [SD]) time from symptom onset to diagnosis of 8.4 (5.11) years and a mean (SD) of 5.5 (4.17) productive hours lost/day. The available non-pharmaceutical support for patients with CDH, encompassing medical, psychological, educational, and professional assistance, was insufficient. The generalisability of the findings to one specific diagnosis is limited due to the collective analysis of the CDH. These findings are invaluable for identifying disruptions in the patient with CDH journeys and for designing improved pathways for those with NT1, NT2, and IH in the future.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
e14376Subventions
Organisme : Takeda Pharma AB, a subsidiary of Takeda Pharmaceuticals Inc
Informations de copyright
© 2024 Takeda Pharmaceuticals International AG. Journal of Sleep Research published by John Wiley & Sons Ltd on behalf of European Sleep Research Society.
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