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Barriers to therapy adherence in narcolepsy.

Benedicte Marie Finger¹, Ashley M Bourke², Gert Jan Lammers³

¹Center for Narcolepsy and Hypersomnias, Professorship for Narcolepsy and Hypersomnolence Research, Department of Medicine, University Witten/Herdecke, Witten, DE, Germany.

|July 9, 2024

Summary

Treatment adherence barriers are prevalent in narcolepsy, with forgetfulness, depression, and side effects being major issues. Addressing these factors is crucial for effective narcolepsy management and improving patient outcomes.

Keywords:

Adherence barriers Depression Narcolepsy Therapy adherence

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Area of Science:

Neurology
Sleep Medicine
Psychiatry

Background:

Narcolepsy treatment adherence is complex, influenced by sleepiness, cognitive issues, and psychiatric comorbidities.
Management involves non-pharmacological and pharmacological approaches, with adherence impacting treatment effectiveness.

Purpose of the Study:

To identify factors influencing treatment adherence in narcolepsy.
To determine the most significant barriers to adherence in narcolepsy patients.

Main Methods:

An online survey assessed demographic, clinical data, and medication use in narcolepsy patients.
Utilized the Adherence Barriers Questionnaire (ABQ), Epworth Sleepiness Scale (ESS), and Patient Health Questionnaire (PHQ-9).

Main Results:

89% of 243 narcolepsy patients reported adherence barriers, most commonly forgetfulness (77%), depression (57%), and side effects (49%).
Medication side effects led to discontinuation in 78% of affected patients.
Significant correlations found between adherence barriers, depression severity (PHQ-9), and excessive daytime sleepiness (ESS).

Conclusions:

Adherence barriers are common and diverse in narcolepsy, often linked to EDS, cognitive deficits, and depression.
Addressing side effects and improving management of EDS and depression are vital for enhancing treatment adherence.
Effective communication and proactive management are key to optimizing narcolepsy care.