Making sense of narcolepsy: A qualitative exploration of how persons with narcolepsy perceive symptoms and their illness experience

Aaron Schokman; Janet Cheung; Alyssa Milton; Diana Naehrig; Nicollette Thornton; Yu Sun Bin; Kristina Kairaitis; Nick Glozier

doi:10.1016/j.sleep.2024.02.026

Making sense of narcolepsy: A qualitative exploration of how persons with narcolepsy perceive symptoms and their illness experience

Sleep Med. 2024 Apr:116:62-70. doi: 10.1016/j.sleep.2024.02.026. Epub 2024 Feb 15.

Authors

Aaron Schokman¹, Janet Cheung², Alyssa Milton², Diana Naehrig², Nicollette Thornton², Yu Sun Bin³, Kristina Kairaitis⁴, Nick Glozier²

Affiliations

¹ Faculty of Medicine and Health, The University of Sydney, Camperdown, NSW, Australia; Sleep Research Group, Charles Perkins Centre, The University of Sydney, Camperdown, NSW, Australia. Electronic address: aaron.schokman@sydney.edu.au.
² Faculty of Medicine and Health, The University of Sydney, Camperdown, NSW, Australia.
³ Faculty of Medicine and Health, The University of Sydney, Camperdown, NSW, Australia; Sleep Research Group, Charles Perkins Centre, The University of Sydney, Camperdown, NSW, Australia.
⁴ Faculty of Medicine and Health, The University of Sydney, Camperdown, NSW, Australia; Department of Respiratory and Sleep Medicine, The University of Sydney at Westmead Hospital, Westmead, NSW, Australia; Ludwig Engel Centre for Respiratory Research, Westmead Institute for Medical Research, Westmead, NSW, Australia.

PMID: 38430792
DOI: 10.1016/j.sleep.2024.02.026

Abstract

Introduction: Understanding how persons with narcolepsy conceptualize symptoms, daily impact and illness experience is key to facilitating dialogue between patients and healthcare professionals. These concepts are usually explored from the perspective of healthcare professionals/researchers and rarely from the perspective of those with narcolepsy.

Methods: 127 self-reported persons with narcolepsy were recruited from an Australian patient support group. A short demographic survey was completed. All agreed to participate in a subsequent 1:1 semi-structured interview. Saturation was reached after 24 interviews (mean age = 33 years (SD 11) with 44% reporting cataplexy). A multidisciplinary team of researchers/clinicians analyzed interview transcripts using thematic analysis.

Results: Participants perceived physical fatigue, sleepiness, and two separate experiences of 'falling asleep/sleep attacks' as distinct symptoms rather than a multidimensional construct (i.e. excessive daytime sleepiness). We also identified two experiences of cataplexy, one triggered by acute emotion and another by a stressor. Participants determined their narcolepsy to be 'well-managed' by the level of functional impairment rather than the frequency of any symptom. Almost all participants described experiencing anticipated stigma and internalized or 'self-' stigma, likely stemming from societal devaluation of sleep and the conflation of sleepiness with laziness.

Conclusion: Descriptions of common symptoms often differed between participants and the existing literature. These differences likely impact patient-physician communication, with both parties utilizing the same terminology to communicate different concepts. The characterization of stigma in narcolepsy presents opportunities for future research exploring the impact and possible development of interventions to reduce the substantial psychological comorbidity in persons with narcolepsy.

Keywords: Functional capacity; Impairment; Narcolepsy; Pathophysiology; Person-centred care; Qualitative; Stigma; Validity.

MeSH terms

Adult
Australia
Cataplexy* / diagnosis
Disorders of Excessive Somnolence* / diagnosis
Humans
Narcolepsy* / diagnosis
Sleepiness