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

Laury Quaedackers*, Jan de Wit, Sigrid Pillen, Merel van Gilst, Nikolaos Batalas, Gert Jan Lammers, Panos Markopoulos, Sebastiaan Overeem

*Corresponding author for this work

Research output: Contribution to journalArticleScientificpeer-review

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.
Original languageEnglish
JournalJMIR mHealth and uHealth
Volume8
Issue number1
DOIs
Publication statusPublished - Jan 2020

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Mobile Applications
Sleep Paralysis
Interviews
Panic
Hallucinations

Keywords

  • Outcome measure
  • Hypersomnia
  • Patient-related outcome measure
  • PROM
  • mHealth
  • Symptom monitoring

Cite this

Quaedackers, Laury ; de Wit, Jan ; Pillen, Sigrid ; van Gilst, Merel ; Batalas, Nikolaos ; Lammers, Gert Jan ; Markopoulos, Panos ; Overeem, Sebastiaan. / A Mobile App for Longterm Monitoring of Narcolepsy Symptoms : Design, Development, and Evaluation. In: JMIR mHealth and uHealth. 2020 ; Vol. 8, No. 1.
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title = "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.",
keywords = "Outcome measure, Hypersomnia, Patient-related outcome measure, PROM, mHealth, Symptom monitoring",
author = "Laury Quaedackers and {de Wit}, Jan and Sigrid Pillen and {van Gilst}, Merel and Nikolaos Batalas and Lammers, {Gert Jan} and Panos Markopoulos and Sebastiaan Overeem",
year = "2020",
month = "1",
doi = "10.2196/14939",
language = "English",
volume = "8",
journal = "JMIR mHealth and uHealth",
issn = "2291-5222",
number = "1",

}

Quaedackers, L, de Wit, J, Pillen, S, van Gilst, M, Batalas, N, Lammers, GJ, Markopoulos, P & Overeem, S 2020, 'A Mobile App for Longterm Monitoring of Narcolepsy Symptoms: Design, Development, and Evaluation', JMIR mHealth and uHealth, vol. 8, no. 1. https://doi.org/10.2196/14939

A Mobile App for Longterm Monitoring of Narcolepsy Symptoms : Design, Development, and Evaluation. / Quaedackers, Laury; de Wit, Jan; Pillen, Sigrid; van Gilst, Merel; Batalas, Nikolaos; Lammers, Gert Jan; Markopoulos, Panos; Overeem, Sebastiaan.

In: JMIR mHealth and uHealth, Vol. 8, No. 1, 01.2020.

Research output: Contribution to journalArticleScientificpeer-review

TY - JOUR

T1 - A Mobile App for Longterm Monitoring of Narcolepsy Symptoms

T2 - Design, Development, and Evaluation

AU - Quaedackers, Laury

AU - de Wit, Jan

AU - Pillen, Sigrid

AU - van Gilst, Merel

AU - Batalas, Nikolaos

AU - Lammers, Gert Jan

AU - Markopoulos, Panos

AU - Overeem, Sebastiaan

PY - 2020/1

Y1 - 2020/1

N2 - 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.

AB - 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.

KW - Outcome measure

KW - Hypersomnia

KW - Patient-related outcome measure

KW - PROM

KW - mHealth

KW - Symptom monitoring

U2 - 10.2196/14939

DO - 10.2196/14939

M3 - Article

VL - 8

JO - JMIR mHealth and uHealth

JF - JMIR mHealth and uHealth

SN - 2291-5222

IS - 1

ER -