Summary: The “Narcolepsy Monitor” app allows people with narcolepsy to track more than simply their excessive daytime sleepiness. Patients can monitor a fuller picture of their disease burden, including anxiety symptoms and memory problems.
Key Takeaways:
- Narcolepsy involves a wide range of symptoms beyond excessive daytime sleepiness, including concentration and memory problems, social difficulties, fatigue, and mental health issues like depression and anxiety.
- Symptoms of narcolepsy can change over time, necessitating ongoing monitoring and personalized care.
- The Narcolepsy Monitor smartphone app was developed to track this diverse spectrum of symptoms, providing valuable insights into their impact on daily life.
Healthcare psychologist Laury Quaedackers, a PhD student in the department of industrial design at Eindhoven (Netherlands) University of Technology conducted several clinical studies on children and adults with narcolepsy, where she found that concentration and memory problems, social problems, fatigue, depressed mood, and anxiety/panic symptoms are common symptoms (in addition to the hallmark excessive daytime sleepiness).
These symptoms also often change over time. This prompted the development of a smartphone app, “Narcolepsy Monitor,” which allows a wide range of symptoms to be tracked. 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.
Physician and researcher Sebastiaan Overeem, PhD, who supervised the PhD study, Capturing the narcolepsy symptom spectrum: an mHealth approach, says in a release, “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 says in a release, “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.”
The Narcolepsy Monitor app, developed by Kempenhaeghe’s Center for Sleep Medicine alongside Eindhoven University of Technology and Sleep-Wake Centre SEIN, among others, will remain available to 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.
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