TY - JOUR
T1 - A preliminary study of telemedicine for patients with hepatic glycogen storage disease and their healthcare providers
T2 - from bedside to home site monitoring
AU - Hoogeveen, Irene J
AU - Peeks, Fabian
AU - de Boer, Foekje
AU - Lubout, Charlotte M A
AU - de Koning, Tom J
AU - Te Boekhorst, Sebastiaan
AU - Zandvoort, Robert-Jan
AU - Burghard, Rob
AU - van Spronsen, Francjan J
AU - Derks, Terry G J
PY - 2018/12
Y1 - 2018/12
N2 - BackgroundThe purpose of this project was to develop a telemedicine platform that supports home site monitoring and integrates biochemical, physiological, and dietary parameters for individual patients with hepatic glycogen storage disease (GSD).Methods and resultsThe GSD communication platform (GCP) was designed with input from software developers, GSD patients, researchers, and healthcare providers. In phase 1, prototyping and software design of the GCP has occurred. The GCP was composed of a GSD App for patients and a GSD clinical dashboard for healthcare providers. In phase 2, the GCP was tested by retrospective patient data entry. The following software functionalities were included (a) dietary registration and prescription module, (b) emergency protocol module, and (c) data import functions for continuous glucose monitor devices and activity wearables. In phase 3, the GSD App was implemented in a pilot study of eight patients with GSD Ia (n=3), GSD IIIa (n=1), and GSD IX (n=4). Usability was measured by the system usability scale (SUS). The mean SUS score was 64/100 [range: 38-93].ConclusionsThis report describes the design, development, and validation process of a telemedicine platform for patients with hepatic GSD. The GCP can facilitate home site monitoring and data exchange between patients with hepatic GSD and healthcare providers under varying circumstances. In the future, the GCP may support cross-border healthcare, second opinion processes and clinical trials, and could possibly also be adapted for other diseases for which a medical diet is the cornerstone.
AB - BackgroundThe purpose of this project was to develop a telemedicine platform that supports home site monitoring and integrates biochemical, physiological, and dietary parameters for individual patients with hepatic glycogen storage disease (GSD).Methods and resultsThe GSD communication platform (GCP) was designed with input from software developers, GSD patients, researchers, and healthcare providers. In phase 1, prototyping and software design of the GCP has occurred. The GCP was composed of a GSD App for patients and a GSD clinical dashboard for healthcare providers. In phase 2, the GCP was tested by retrospective patient data entry. The following software functionalities were included (a) dietary registration and prescription module, (b) emergency protocol module, and (c) data import functions for continuous glucose monitor devices and activity wearables. In phase 3, the GSD App was implemented in a pilot study of eight patients with GSD Ia (n=3), GSD IIIa (n=1), and GSD IX (n=4). Usability was measured by the system usability scale (SUS). The mean SUS score was 64/100 [range: 38-93].ConclusionsThis report describes the design, development, and validation process of a telemedicine platform for patients with hepatic GSD. The GCP can facilitate home site monitoring and data exchange between patients with hepatic GSD and healthcare providers under varying circumstances. In the future, the GCP may support cross-border healthcare, second opinion processes and clinical trials, and could possibly also be adapted for other diseases for which a medical diet is the cornerstone.
KW - Hepatic glycogen storage diseases
KW - Telemedicine
KW - Monitoring
KW - Mobile application
KW - Dietary management
KW - Rare diseases
KW - METABOLIC-CONTROL
KW - CLINICAL-COURSE
KW - III DIAGNOSIS
KW - MANAGEMENT
KW - THERAPY
KW - CARDIOMYOPATHY
KW - CHILDREN
KW - TYPE-1
U2 - 10.1007/s10545-018-0167-2
DO - 10.1007/s10545-018-0167-2
M3 - Article
C2 - 29600495
SN - 0141-8955
VL - 41
SP - 929
EP - 936
JO - Journal of Inherited Metabolic Disease
JF - Journal of Inherited Metabolic Disease
IS - 6
ER -