Psychiatric symptoms, functional ability and quality of life in patients with narcolepsy

The project aims to examine the prevalence and nature of specific sleep-related disturbances and other secondary symptoms in narcolepsy patients.

Narcolepsy is a chronic, incurable neurological sleep disorder affecting about 2-3 in 10,000 people. It typically begins in adolescence and thus significantly impacts the patients' lives.

In addition to sleep-wake disturbances and excessive daytime sleepiness, up to 85% of patients experience vivid sleep-wake boundary phenomena like sleep paralysis or hallucinations, or intensified REM sleep phenomena, such as nightmares or dream-enactment behaviors.

During the day, some exhibit automatic behavior, appearing awake but acting irrationally. Narcolepsy is also linked to depression, anxiety, memory issues, and executive function problems, often leading to social isolation and reduced work or study capacity.

Limited knowledge

However, there is limited knowledge on how these sleep-related secondary symptoms of narcolepsy relate to psychiatric symptoms, functional ability, or quality of life.

A national survey and diary study, conducted in Finland in collaboration with Salla Lamusuo (MD, neurologist) and Juha Markkula (MD, psychiatrist) aims to examine the prevalence and nature of specific sleep-related disturbances and other secondary symptoms in narcolepsy patients, the degree of psychological distress, and how these relate to the disease stage, severity, medication, and quality of life.