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Journal of Sleep Research
Article . 2024 . Peer-reviewed
License: CC BY
Data sources: Crossref
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PubMed Central
Article . 2024
License: CC BY
Data sources: PubMed Central
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Research.fi
Article . 2024 . Peer-reviewed
Data sources: Research.fi
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Patient experiences of narcolepsy and idiopathic hypersomnia in the Nordics: a patient journey map

Authors: Märt Vesinurm; Christina Dünweber; Jesper Rimestad; Anne‐Marie Landtblom; Poul Jørgen Jennum;

Patient experiences of narcolepsy and idiopathic hypersomnia in the Nordics: a patient journey map

Abstract

SummaryCentral 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.

Country
Sweden
Keywords

Male, Adult, Sweden, central disorders of hypersomnolence; idiopathic hypersomnia; lived experience; living with narcolepsy; patient experience; patient journey, Neurologi, Sleep and Neurology, Norway, Denmark, Idiopathic Hypersomnia, Middle Aged, Young Adult, Neurology, Surveys and Questionnaires, Humans, Female, Finland, Narcolepsy, Aged

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selected citations
These citations are derived from selected sources.
This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Citations provided by BIP!
popularity
This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
BIP!Popularity provided by BIP!
influence
This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Influence provided by BIP!
impulse
This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
BIP!Impulse provided by BIP!
1
Average
Average
Average
Green
hybrid