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A preliminary study of telemedicine for patients with hepatic glycogen storage disease and their healthcare providers: from bedside to home site monitoring
Author(s) -
Hoogeveen Irene J.,
Peeks Fabian,
Boer Foekje,
Lubout Charlotte M. A.,
Koning Tom J.,
Boekhorst Sebastiaan,
Zandvoort RobertJan,
Burghard Rob,
Spronsen Francjan J.,
Derks Terry G. J.
Publication year - 2018
Publication title -
journal of inherited metabolic disease
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.462
H-Index - 102
eISSN - 1573-2665
pISSN - 0141-8955
DOI - 10.1007/s10545-018-0167-2
Subject(s) - usability , telemedicine , health care , medicine , medical emergency , computer science , human–computer interaction , economics , economic growth
Background The 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 results The 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]. Conclusions This 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.