0744 A Systematic Review of Non-Pharmacological Interventions for Central Disorders of Hypersomnolence: Highlighting Lived Experience Involvement

Abstract Introduction People with central disorders of hypersomnolence (CDH), which include Narcolepsy Types 1 & 2, and Idiopathic Hypersomnia (IH), have high rates of mental health disorder symptoms and lower health-related quality of life (HRQoL), despite treatment with medications. Recent efforts have aimed to develop adjunctive non-pharmacological interventions. Lived experience involvement is now expected in research to enhance acceptability and relevance, but the application of lived experience involvement in CDH is unclear. This systematic review aims to evaluate the feasibility, acceptability, and effectiveness of non-pharmacological interventions for CDH on sleep and psychological outcomes and examine how people with CDH are involved across the research cycle. Methods This review was preregistered on OSF and followed PRISMA guidelines. A search was conducted on Medline, CINHAL, PsycINFO, Embase, CENTRAL, Web of Science, and ClinicalTrials.gov in July 2025. Studies reporting non-pharmacological intervention effects on mental health, HRQoL, functional, or sleep-related symptoms in confirmed CDH were included. Results From 7804 studies, 12 studies were included. Studies focused on napping and/or sleep schedules (n=7), cognitive behavioural therapy (CBT; n=3), mindfulness-based (MBI; n=1), and meditation-relaxation therapy (MR therapy; n=1) interventions. Extended nocturnal sleep interventions for narcolepsy generally reported improvements in daytime sleepiness. Napping intervention results for narcolepsy were inconsistent. Psychology interventions (CBT, MBI, and MR therapy) found generally positive results on their primary outcomes; CBT and MBI interventions significantly improved some mental health outcomes; CBT for Nightmares significantly improved nightmare severity; and MR therapy significantly improved sleep paralysis. All studies were pilot or feasibility studies with small sample sizes and good acceptability. One psychology intervention and no napping or sleep schedule interventions were tested with people with IH. People with narcolepsy were involved in three studies, but reporting was limited and did not use recommended reporting procedures. No people with IH were involved in the design of any interventions. Conclusion There has been recent progress in developing adjunctive non-pharmacological interventions for people with CDH that show promising effectiveness. However, involvement of people with CDH using standardised reporting, especially with people with IH, is absent and should be incorporated into future research. Support (if any) Sleep Disorders Australia; ARC Life Course Centre; Australian Government.

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Journal
SLEEP
Published
2026-05-01
DOI
https://doi.org/10.1093/sleep/zsag091.0743
Primary Topic
Sleep and Wakefulness Research
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article
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article

0744 A Systematic Review of Non-Pharmacological Interventions for Central Disorders of Hypersomnolence: Highlighting Lived Experience Involvement

Elena Bild, Aaron Schokman, Simon Smith, Sara Winter et al.
SLEEP
Sleep and Wakefulness Research
article

0744 A Systematic Review of Non-Pharmacological Interventions for Central Disorders of Hypersomnolence: Highlighting Lived Experience Involvement

Elena Bild, Aaron Schokman, Simon Smith, Sara Winter, Shannon Edmed
article en

Abstract

Abstract Introduction People with central disorders of hypersomnolence (CDH), which include Narcolepsy Types 1 & 2, and Idiopathic Hypersomnia (IH), have high rates of mental health disorder symptoms and lower health-related quality of life (HRQoL), despite treatment with medications. Recent efforts have aimed to develop adjunctive non-pharmacological interventions. Lived experience involvement is now expected in research to enhance acceptability and relevance, but the application of lived experience involvement in CDH is unclear. This systematic review aims to evaluate the feasibility, acceptability, and effectiveness of non-pharmacological interventions for CDH on sleep and psychological outcomes and examine how people with CDH are involved across the research cycle. Methods This review was preregistered on OSF and followed PRISMA guidelines. A search was conducted on Medline, CINHAL, PsycINFO, Embase, CENTRAL, Web of Science, and ClinicalTrials.gov in July 2025. Studies reporting non-pharmacological intervention effects on mental health, HRQoL, functional, or sleep-related symptoms in confirmed CDH were included. Results From 7804 studies, 12 studies were included. Studies focused on napping and/or sleep schedules (n=7), cognitive behavioural therapy (CBT; n=3), mindfulness-based (MBI; n=1), and meditation-relaxation therapy (MR therapy; n=1) interventions. Extended nocturnal sleep interventions for narcolepsy generally reported improvements in daytime sleepiness. Napping intervention results for narcolepsy were inconsistent. Psychology interventions (CBT, MBI, and MR therapy) found generally positive results on their primary outcomes; CBT and MBI interventions significantly improved some mental health outcomes; CBT for Nightmares significantly improved nightmare severity; and MR therapy significantly improved sleep paralysis. All studies were pilot or feasibility studies with small sample sizes and good acceptability. One psychology intervention and no napping or sleep schedule interventions were tested with people with IH. People with narcolepsy were involved in three studies, but reporting was limited and did not use recommended reporting procedures. No people with IH were involved in the design of any interventions. Conclusion There has been recent progress in developing adjunctive non-pharmacological interventions for people with CDH that show promising effectiveness. However, involvement of people with CDH using standardised reporting, especially with people with IH, is absent and should be incorporated into future research. Support (if any) Sleep Disorders Australia; ARC Life Course Centre; Australian Government.

SLEEPVol. 49(Supplement_1)
The University of Sydney (AU), Queensland Health (AU), The University of Queensland (AU)
Openalex Percentile: Top 6%
Sleep and Wakefulness Research
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