App demonstrates importance of broader treatment approach to narcolepsy

Narcolepsy Monitor app. Image: Kempenhaeghe
Narcolepsy Monitor app. Image: Kempenhaeghe
PhD candidate Laury Quaedackers studied how a special app can improve the quality of life for people with narcolepsy. She defended her thesis on March 21 at the Department of Industrial Design.

Narcolepsy is a rare but serious sleep disorder. People with narcolepsy fall asleep involuntarily at random times. In addition, episodes of muscle weakness triggered by emotions are a common symptom. However, people with narcolepsy appear to experience many more symptoms that may require treatment and counseling. PhD candidate Laury Quaedackers has demonstrated this on the basis of data collected with a special app, ’Narcolepsy Monitor’, which was developed by Kempenhaeghe’s Center for Sleep Medicine alongside Eindhoven University of Technology and Sleep-Wake Centre SEIN, among others.

For her PhD research at the section Future Everyday of the Department of Industrial Design, healthcare psychologist Laury Quaedackers conducted a number of clinical studies on children and adults with narcolepsy. Among other things, this revealed that concentration and memory problems, social problems, fatigue, depressed mood, and anxiety or panic symptoms are common in narcolepsy in addition to drowsiness.

These symptoms also often change over time. This prompted the development of a special app, ’ Narcolepsy Monitor ’, which allows a wide range of symptoms to be tracked over time. Analysis of the app’s data demonstrated a diversity of symptoms in narcolepsy, greatly impacting functioning in daily life with effects at school or work and in relationships.

Importance of multidisciplinary approach confirmed

Physician and researcher Sebastiaan Overeem , who supervised the PhD study, says: "Through innovation and scientific research, we at Kempenhaeghe continuously work to improve diagnosis and treatment. Laury Quaedackers’ thesis nicely demonstrates that narcolepsy is not just about finding the right medication to combat excessive sleepiness and muscle weakness."

"It is essential to take a much broader approach to diagnosis, treatment, and counseling with attention to individual physical and psychological symptoms that people with narcolepsy may experience."

Quaedackers: "The findings from my research confirm the importance of the multidisciplinary approach already used in narcolepsy expertise centers, such as Kempenhaeghe and SEIN, for people with narcolepsy. A psychologist and a social worker, among others, are often involved with patients with suspected narcolepsy."

Overeem adds: "Centers of expertise such as Kempenhaeghe and SEIN can also support the second line with this broad approach. In doing so, we improve care for people with narcolepsy together."

Title of Laury Quaedacker’s thesis: Capturing the Narcolepsy Symptom Spectrum: an mHealth Approach

Supervisors: Sebastiaan Overeem and Panos Markopoulos

’Narcolepie Monitor’* available in App Store and Google Play

Meanwhile, ’Narcolepsie Monitor’* has already been downloaded more than 7000 times, a significant number given the rarity of the condition. The app will remain available to (individual) patients even after the completion of the PhD study. With the help of the app, patients gain more insight into their own spectrum of symptoms and the burden of this in daily life.

* ’Narcolepsie Monitor’ is not used to make a medical diagnosis or medical decisions. The app is available in Dutch and English, but the name of the app is in Dutch.

The PhD research by Laury Quaedackers is part of the Eindhoven MedTech Innovation Center (e/MTIC) .

About Kempenhaeghe

As a specialized center in the field of complex epilepsy, sleep disorders, and neurological learning and development disorders, Stichting Kempenhaeghe offers hospital care, residential care, and special education.

Kempenhaeghe’s Center for Sleep Medicine has been recognized by the Netherlands Federation of University Medical Centers (NFU) as a center of expertise for the rare disorder of narcolepsy.