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Cited by 10Medication Adherence and ComplianceSleep and related disordersSleep and Wakefulness Research

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Barriers to therapy adherence in narcolepsy

Open access
Finger, Benedicte Marie, Bourke, Ashley M., Lammers, Gert Jan, Veauthier, Christian, Yildizli, Merve, Müller, Sabrina, Triller, Annika, Kallweit, Ulf·2024·Sleep Medicine
DOI 10.1016/j.sleep.2024.06.028
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Abstract

BACKGROUND: Treatment adherence (TA) in narcolepsy is a complex phenomenon influenced by various factors beyond patient-related aspects. The management of narcolepsy involves non-pharmacological and symptomatic pharmacological treatment. Factors such as chronic daytime sleepiness, cognitive deficits, psychiatric comorbidities and adverse effects of pharmacological treatment are aspects of narcolepsy that could undermine TA, impacting patients' ability or willingness to consistently follow treatment plans. The aim of this study was to identify the factors influencing TA in narcolepsy and to determine the most significant barriers to adherence. METHODS: An online survey was conducted during the pandemic, assessing demographic and clinical data, medication usage, and adverse effects of treatment. Various questionnaires, such as the Adherence Barriers Questionnaire (ABQ) and Epworth Sleepiness Scale (ESS), were utilized. The ABQ identified patient-specific barriers to medication adherence, while the Patient Health Questionnaire (PHQ-9) assessed depressive symptoms. RESULTS: We analyzed 243 narcolepsy patients (77 % female, mean age 35.7 ± 12.3 years) with 71 % having narcolepsy type 1 (NT1). The average ESS score was 16.4 (SD ± 3.7). Adherence barriers (AB) were identified in 89 % of patients (216/243) based on ABQ score. The most common barriers reported were "Forgetfulness" (77 %), "Depression" (57 %), and "Side effect-driven medication reduction/stopping behavior" (49 %). Approximately 72 % of patients reported side effects from their narcolepsy medication, leading to discontinuation in 78 % of cases. A moderate correlation was found between the severity of adherence barriers (ABQ score) and levels of depression (PHQ-9 score; rs = 0.412, p = 00.000), as well as ESS score (p = . 048). The results of this study may have been influenced by the pandemic situation. CONCLUSION: Adherence barriers are common (89 %) and diverse among people with narcolepsy. Many barriers are related to excessive daytime sleepiness (EDS), cognitive deficits or depressive symptoms, highlighting the importance of recognizing and addressing them for optimal TA. Medication side effects, especially occurring when polypharmacology is utilized, also significantly contribute to adherence challenges. Effective communication regarding therapy adherence and improved detection and management of EDS and depression are crucial for enhancing TA in narcolepsy patients.

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Metadata

Authors
Finger, B. M., Bourke, A. M., Lammers, G. J., Veauthier, C., Yildizli, M., Müller, S., Triller, A., & Kallweit, U.
Affiliations
  • Witten/Herdecke University (DE)
  • Max Planck Institute for Brain Research (DE)
  • Leiden University (NL)
  • Humboldt-Universität zu Berlin (DE)
  • Wismar University of Applied Sciences (DE)
Corresponding author
  • Finger, Benedicte Marie
  • Kallweit, Ulf
ORCID
Venue
Sleep Medicine
Publisher
Elsevier BV
Published
2024-09
Volume
121
Pages
151-159
ISSN
1389-9457 (ISSN-L)
DOI
10.1016/j.sleep.2024.06.028
OpenAlex
W4400251966
Cited by
10
References
42
Citations by year
2026: 4 · 2025: 5 · 2024: 1
FWCI
5.55
Type
journal article
Language
en
Open access
Licence
Locations
  • Sleep Medicine (publishedVersion, cc-by-nc)
  • PubMed (publishedVersion)
  • Leiden Repository (Leiden University) (publishedVersion, cc-by-nc)
  • Leiden Repository (Leiden University) (submittedVersion, cc-by-nc)
  • Publication Server of Goethe University Frankfurt am Main (Goethe University Frankfurt) (submittedVersion, cc-by-nc)
Topics
  • Health Sciences › Medicine › Family Practice › Medication Adherence and Compliance
  • Social Sciences › Psychology › Experimental and Cognitive Psychology › Sleep and related disorders
  • Life Sciences › Neuroscience › Cognitive Neuroscience › Sleep and Wakefulness Research
Keywords
narcolepsy, medication adherence, barriers to medication adherence, excessive daytime sleepiness, depression, adverse drug reactions, polypharmacy, forgetfulness, cognitive impairment, psychiatric comorbidity, Epworth Sleepiness Scale, Patient Health Questionnaire
MeSH terms
Assessment of Medication Adherence, Adult, Depression, Female, Humans, Male, Middle Aged, Narcolepsy, Surveys and Questionnaires, Drug Monitoring, Medication Adherence

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