ArticleJMIR mHealth and uHealth2020
A Mobile App for Longterm Monitoring of Narcolepsy Symptoms: Design, Development, and Evaluation.
Article in JMIR mHealth and uHealth, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
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Who cites it
7 citing papers in PubMed, 16 citations in OpenAlex.
- Advancing Narcolepsy Advocacy: Bridging Patient Narratives and Systemic Change.Nature and science of sleep · 2025Article
- Current Implementation of Digital Health in Chronic Disease Management: Scoping Review.Journal of medical Internet research · 2024Article
- Data Visualization Preferences in Remote Measurement Technology for Individuals Living With Depression, Epilepsy, and Multiple Sclerosis: Qualitative Study.Journal of medical Internet research · 2024Article
- Data Visualization for Chronic Neurological and Mental Health Condition Self-management: Systematic Review of User Perspectives.JMIR mental health · 2022Review
- Idling for Decades: A European Study on Risk Factors Associated with the Delay Before a Narcolepsy Diagnosis.Nature and science of sleep · 2022Article
- The PICASO cloud platform for improved holistic care in rheumatoid arthritis treatment-experiences of patients and clinicians.Arthritis research & therapy · 2021Observational
- Recognizing the Symptom Spectrum of Narcolepsy to Improve Timely Diagnosis: A Narrative Review.Nature and science of sleep · 2021Review
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Authors and funding
8 authors at 4 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundNarcolepsy is a chronic sleep disorder with a broad variety of symptoms. Although narcolepsy is primarily characterized by excessive daytime sleepiness and cataplexy (loss of muscle control triggered by emotions), patients may suffer from hypnagogic hallucinations, sleep paralysis, and fragmented night sleep. However, the spectrum of narcolepsy also includes symptoms not related to sleep, such as cognitive or psychiatric problems. Symptoms vary greatly among patients and day-to-day variance can be considerable. Available narcolepsy questionnaires do not cover the whole symptom spectrum and may not capture symptom variability. Therefore, there is a clinical need for tools to monitor narcolepsy symptoms over time to evaluate their burden and the effect of treatment.
objectiveThis study aimed to describe the design, development, implementation, and evaluation of the Narcolepsy Monitor, a companion app for long-term symptom monitoring in narcolepsy patients.
methodsAfter 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 that each symptom imposes. The app emphasizes the reporting of changes in relative severity of the symptoms. A total of 7 patients with narcolepsy were recruited and asked to use the app for 30 days. Evaluation was done by using in-depth interviews and user experience questionnaire.
resultsWe designed and developed a final version of the Narcolepsy Monitor after which user evaluation took place. Patients used the app on an average of 45.3 (SD 19.2) days. The app was opened on 35% of those days. Daytime sleepiness was the most dynamic symptom, with a mean number of changes of 5.5 (SD 3.7) per month, in contrast to feelings of anxiety or panic, which was only moved 0.3 (SD 0.7) times per month. Mean symptom scores were highest for daytime sleepiness (1.8 [SD 1.0]), followed by lack of energy (1.6 [SD 1.4]) and often awake at night (1.5 [SD 1.0]). The personal in-depth interviews revealed 3 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.
conclusionsThe Narcolepsy Monitor appears to be a helpful tool to gain more insight into the individual burden of narcolepsy symptoms over time and may serve as a patient-reported outcome measure for this debilitating disorder.
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