Accepted for/Published in: JMIR mHealth and uHealth
Date Submitted: Jun 5, 2019
Open Peer Review Period: Jun 10, 2019 - Aug 3, 2019
Date Accepted: Oct 22, 2019
(closed for review but you can still tweet)
Design, development and usability of the Narcolepsy Monitor: a mobile app for long-term subjective symptom monitoring in narcolepsy patients
ABSTRACT
Background:
Narcolepsy is a debilitating sleep disorder with a broad variety of symptoms. It is primarily characterized by excessive daytime sleepiness and cataplexy (partial or total loss of muscle control, often triggered by emotions). Beside these core symptoms, narcolepsy patients may suffer from hypnagogic hallucinations, sleep paralysis and fragmented night sleep. However, the spectrum of narcolepsy also includes several symptoms not related to sleep, such as cognitive or psychiatric problems. The symptoms vary greatly among patients and even within patients day-to-day variance can be significant. Current diagnostic tests focus primarily on daytime sleepiness and cataplexy, although these symptoms do not fully account for the experienced burden of the disorder. Questionnaires to monitor narcolepsy symptoms also not cover the whole symptom spectrum and may not capture symptom variability.
Objective:
To describe the development and evaluation process of the Narcolepsy Monitor: a companion app for long term subjective symptom monitoring in narcolepsy patients.
Methods:
After several iterations during which content, interaction design, data management and security were critically evaluated, a complete version of the app was built. The Narcolepsy Monitor allows patients to report a broad spectrum of experienced symptoms and rate their severity based on the level of burden each symptom imposes. The app emphasizes reporting of changes in relative severity of the symptoms. Seven narcolepsy patients were recruited and asked to use the app for thirty days. Evaluation was done using in depth interviews and the User Experience Questionnaire.
Results:
Patients used the app on average for 45.3 (± 19.2) days. The app was opened in 34.9% of those days. ‘Daytime sleepiness’ was the most dynamic symptom with a mean number of changes of 5.5 ± 3.7 per month, in contrast to ‘feelings of anxiety or panic’, which was only moved 0.3 ±0.7 times per month. Mean symptom scores were highest for ‘daytime sleepiness’ (1.8 ± 1.0). Patients reported ‘feelings of anxiety or panic’ as the least bothering, scoring 0.1 ± 0.22. The personal in-depth interviews revealed three major themes: (1) Reasons to use, (2) Usability and (3) Features. Overall patients appreciated the concept of ranking symptoms on subjective burden and found the app easy to use.
Conclusions:
The Narcolepsy Monitor appears to be a helpful tool to gain more insight in the individual burden of narcolepsy symptoms over time. Clinical Trial: Not applicable
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