Daytime complaints associated with sleepiness and fatigue among patients suffering from obstructive sleep apnea and narcolepsy: a qualitative study

Objectives/Introduction: Like other sleep disorders, obstructive sleep apnea and narcolepsy have been linked with various prevalent daytime complaints, such as excessive daytime sleepiness (EDS). However, in clinical practice, EDS can be experienced and expressed in a variety of ways, with common overlap with other states (fatigue, drowsiness, tiredness) and ties to other cognitive or behavioral symptoms. Patients’ experiences are often difficult to define and to target given the interchangeable nature of the symptoms and their descriptive terms. In order to achieve more accurate diagnosis, to improve evaluating or monitoring tools, and to investigate possible therapeutical interventions, the present study aims to explore the general daytimes experiences and descriptors from a patient perspective.

Methods: Twenty semi-directed interviews were conducted among Dutch patients (20–74 years old, 12 females, 8 males). Patients had either received a prior diagnosis of narcolepsy (n = 5) or of sleep apnea (n = 15). The interviews focused on the patients’ description of their daytime complaints in their own words, temporal variations in the experienced complaints, and patients’ solutions and strategies to face them. The data resulting from the transcriptions were analyzed using an eclectic coding method before the thematic analysis.

Results: Preliminary results highlight frequent and persistent daytime complaints pertaining to sleepiness, fatigue and tiredness, without clear distinctions between the descriptors of these states. In fact, the patients’ actual descriptions of their symptoms varied quite a lot. Patients’ experiences were often divided between physical concerns and “mental” ones, with a common cause associated with the lack of “energy”. The temporal pattern of complaints throughout the day showed substantial inter-patient variability, with some patients referring to linear trends while others describe more fluctuating or unpredictable tendencies.

Conclusion: The initial findings highlight the interchangeable nature of the daytime complaints, with commonalities but also deviations in the experiences and descriptions across patients, and suggest a misalignment between the scales often used to diagnose and monitor daytime complaints – particularly those pertaining to daytime sleepiness – and patients’ experiences. The insights can be used to improve the detection of these multifaceted complaints, and to develop person-tailored and just-in-time therapeutical interventions.