A Mobile App for Longterm Monitoring of Narcolepsy Symptoms: Design, Development, and Evaluation

Abstract

Background Narcolepsy 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. Objective This 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. 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 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. Results We 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. Conclusions The 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.

Recognizing the Symptom Spectrum of Narcolepsy to Improve Timely Diagnosis: A Narrative Review

“…The core concept is based on a visual representation of the perceived burden of a variety of symptoms. 24 In Figure 1, the reported presence and burden of symptoms is shown in a population sample of more than 700 self-reported narcolepsy patients. These data 1084 strikingly show that the narcolepsy spectrum reaches beyond the classic pentad of symptoms.…”

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Figure 1 Reported presence of symptoms in narcolepsy, using the Narcolepsy Monitor, a mobile app to rate symptom presence and burden. 24 Data are shown from a population sample of 718 subjects between 18 and 70 years of age, who scored >10 on the Ullanlinna Narcolepsy Scale (UNS) and reported to be formally diagnosed with narcolepsy. Median age 32 years, median UNS score 21.

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The PICASO cloud platform for improved holistic care in rheumatoid arthritis treatment—experiences of patients and clinicians

“…Our PD design including graphical visualizations of the individual health data was appropriate for and appreciated by the vast majority of our patients as it allowed them to receive very quickly an overview on their current health status and daily tasks. By using the UEQ, which assesses user experience KPI and has recently also been applied in eHealth evaluations [ 9 , 27 ], we received valuable responses supporting the definition of precise and transparent goals for further developments of efficient eHealth ICT platforms. Some of these (e.g., better decision support, alerts for physicians when patients show values above resp.…”

Dissociative Symptoms are Highly Prevalent in Adults with Narcolepsy Type 1

“…Longitudinal monitoring of the broad spectrum of narcolepsy symptoms may be useful to discover such relations and to increase our understanding of the course of symptoms. Modern tools may help in such studies, for example, with the Narcolepsy Monitor, a recently developed mobile app enabling long-term monitoring of the subjective severity of a wide range of narcolepsy symptoms (Quaedackers et al, 2020).…”